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Celiac.com 07/25/1996 (Updated: 12/29/2020) - Like many people with celiac disease (it's an autoimmune disease and not a wheat allergy or the same as gluten sensitivity, gluten intolerance, or sensitivity to gluten), I spent a lot of years and money and endured many tests and misdiagnoses before doctors finally discovered that I needed to avoid gluten (including all gluten containing ingredients). Gluten is a protein found in gluten containing grains that include wheat, rye, and barley, and is often hidden in processed foods. To treat my celiac disease I had to go on a gluten-free diet for life, which meant that I had to learn to read food labels, and I ate mostly naturally gluten-free foods like meats, fruits, nuts, vegetables, gluten-free breads, and foods that were labeled gluten-free or made using gluten-free grains. My symptoms, which included weight loss, abdominal pain (especially in my middle-right section while sleeping), bloating, and long-term diarrhea, slowly disappeared. Because of the large variety of symptoms associated with celiac disease, and the fact that many celiacs have few or no symptoms, diagnosis can be very difficult, which is why is still takes an average of 6-10 years to get diagnosed. Most medical doctors are taught to look for classic symptoms and often make a wrong diagnosis, or no diagnosis at all. During my doctor visits my diet was never discussed, even though most of my symptoms were very typical, and greatly related to food digestion. A simple (and free!) exclusionary diet would have quickly revealed my problem. An exclusionary diet involves eliminating wheat, rye, oats, barley, dairy products, soy and eggs for several weeks, and recording any reaction as you slowly add these foods back into your diet. Unfortunately it took my doctors over two years to make a diagnosis, and during that time I was misdiagnosed with Irritable Bowel Syndrome (IBS), told that I could have cancer or a strange form of Leukemia, treated for a non-existent ulcer with a variety of antibiotics that made me very ill, and was examined for a possible kidney problem. I also underwent many unnecessary and expensive tests including CAT Scans, thyroid tests, an MRI, tests for bacterial infections and parasites, ultrasound scans, and gall bladder tests. Ultimately the only reason I every got my diagnosis was because I ended up reading something about it in a book on nutrition, which led me to ask my doctor to be screened for it. I was finally diagnosed via a blood test for celiac disease, followed by a biopsy of my small intestine (which is not as bad as it sounds). A full recovery took me 2-3 years, and during that time I also had temporary food intolerance issues to things like dairy (casein), corn, tomatoes, and chicken eggs. During the 1-2 year time period after going 100% gluten-free I was thankfully able to add those things back to my diet. I created Celiac.com to help others avoid a similar ordeal. I also want to provide people who know they have the problem with information which will improve their quality of life, and broaden their culinary horizons. To do this, I have compiled information from a large variety of sources including medical journals, books, doctors, scientists, and news sources, and posted it all right here. Many of our articles are written by medical professionals such as nurses, doctors, and other celiac disease experts.

Celiac.com 06/17/2019 - A federal appeals court reinstated a lawsuit filed by a boy with celiac disease against a Colonial Williamsburg restaurant. The court ruled that a jury should decide whether the restaurant violated the Americans with Disabilities Act when they barred a boy from bringing his gluten-free meal into the Shields Tavern. The lawsuit lists the boy's name as J.D. Because J.D. has celiac disease and follows a strict gluten-free diet, he couldn't eat with his classmates on their May 11, 2017, field trip. The staff at the Shields Tavern told J.D. that they could make a gluten-free meal for him, but they could not allow him to eat his own food in the tavern, which is owned and operated by the Colonial Williamsburg Foundation. J.D. had had problems before with gluten-free restaurant meals that were not, in fact, gluten-free. Since he hadn't eaten at Shields Tavern before, he declined their offer to make him a gluten-free meal. Because of Shields Tavern rules against outside food, J.D. was forced to eat a homemade meal apart from his friends and teachers. J.D. may have facts on his side. A recent study shows that most gluten-free restaurant food contains gluten. J.D.'s father chose to sue the foundation, arguing it violated the ADA, the Rehabilitation Act and the Virginians with Disabilities Act. The initial lawsuit was dismissed before trial by U.S. District Judge Rebecca Beach Smith, who held that J.D. did not show that he suffered discrimination because of his disability. In a 2-1 ruling that reinstated J.D.'s lawsuit, Judge Albert Diaz, writing for the majority, noted that Shields Tavern has high gluten-free meal standards that may be okay for most people with celiac disease, and a jury might decide they are good enough. But, added Diaz, “The district court incorrectly overlooked the testimony that J.D. repeatedly became sick after eating purportedly gluten-free meals prepared by commercial kitchens. Until a jury resolves the disputes surrounding the nature and extent of J.D.’s disability, we cannot determine if the accommodation Shields Tavern offered, as good as it may be, fully accounted for his disability.” Read more at Richmond.com

Celiac.com 12/21/2017 - After a lot of trial and error we celiacs learn, often the hard way, to eliminate foods that are poisonous to our bodies. Sadly, we often forget about what "goes onto" our skin. Since the skin is the living outer layer of our bodies it absorbs not only water and oils, it also absorbs cosmetics that can be poisonous to our celiac bodies, most specifically those of us afflicted with dermatitis herpetiformis (often called celiac disease of the Skin). Men, before you set this article aside, thinking it's only for women and you are exempt, please read on. One of 133 Americans has a wheat-related allergy according to CNN.com. We have a tendency not to group toothpaste and lip-glosses with cosmetics, and we usually ignore vitamins and medications when researching celiac disease and dermatitis herpetiformis. We forget to ask our hairdresser what products they are using and whether they contain wheat or gluten, and glibly apply night creams (to absorb into our skin as we sleep) and mud packs that promise similar benefits. Inquiring into the gluten content of cosmetics, I contacted more than twenty leading companies, then I waited. I was discouraged, particularly by the blatant rudeness of some of the responses I received. Meanwhile, I had to learn whether gluten could be absorbed through the skin. Some websites answered that question with a direct "no". Even some physicians responded saying "no". However, since the skin is the largest living organ in the body and it does absorb various oils and emollients, listing gluten-containing components of medicinal and non-medicinal ingredients allows consumers with celiac disease (celiac disease) or wheat allergies to make informed choices when purchasing and/or consuming natural health products. It enables them to avoid gluten in quantities that may trigger adverse reactions. There are numerous articles on dermatitis herpetiformis and celiac disease making claims so contradictory that it is no wonder we are confused. And I'm not talking about accidental ingestion of gluten. Some such articles claim that trace amounts of gluten One article insists that the skin is not going to absorb gluten, even though our skin is a living organism that can absorb suntan lotions, trans-dermal drugs, etc. It is so susceptible to absorption that when you place a slice of onion in your sock you will taste it in your mouth the following day. How can these websites make such contrary claims? The skin absorbs flavors as well as creams containing gluten. On the other hand, "Glutino" had an article on record, written on September 14, 2010, regarding "Hidden Gluten in Health and Beauty Products". It states that if you apply hand lotion that contains gluten and then prepare food you are exposing yourself to accidental ingestion and your food to cross contamination. They suggest a site called: naturallydahling.com, a site that lists gluten-containing ingredients commonly used in cosmetics. Research proving the full extent of how much your skin absorbs is still unavailable, but to those who believe that "what goes on, goes in", the cosmetic industry is full of unknowns. The size of gluten molecules suggests that they may not be able to pass through the skin, but chemicals and technology designed to enhance skin absorption are already present, if not prevalent, in the cosmetic industry. These chemicals are potentially dangerous and often go untested for negative health effects, yet are widespread in lotions, antiperspirants, perfumes and the "Great Mother Market" anti-wrinkle cosmetics. Since the cosmetic industry is self-regulated it is more important than ever to carefully read labels and use natural or organic products whenever possible. If you find yourself reacting to a particular cosmetic, it is possible that you may have an increased sensitivity to gluten, an allergy or even dermatitis herpetiformis. But wait a minute! Aren't we told that gluten cannot pass through the skin? I suffered terribly from the use of an "Anti-Frizz" product for my hair that caused a massive outbreak of dermatitis herpetiformis. I should have read the label all the way down to the end. I would have found, in very small print, "wheat germ oil". When researching for this article, I wrote to the company and mentioned my problems with their product. I received an apology and a sample of their "new and improved" "Frizz-Ease" product. They obviously do not know their own products and the fancy names they use are as confusing to them as they are to me. The "new and improved" product contained Avena Sativa, the Latin name for OAT. I was also told that I likely just had "hives" on the back of my scalp, as oats are still somewhat controversial. Some research suggests that oats in themselves are gluten free, but that they are virtually always contaminated with other grains during cultivation, harvest, distribution or processing. Recent research indicates that a protein naturally found in oats (avenin) contains peptide sequences closely resembling some peptides from wheat gluten. The oat peptides caused mucosal inflammation in significant numbers of celiac disease sufferers. Some examination results show that even oats that are not contaminated with wheat particles may be dangerous. Again, I was told not to introduce oats into my diet, or use oatmeal as a facial mask until I had been free of a dermatitis herpetaformis outbreak for at least a year. Thus far I have not been able to get relief for that long. It seems the celiac or those who suffer from dermatitis herpetiformis {and let's face it, most people suffering from dermatitis herpetaformis have celiac disease} have to apply the rule of "caveat emptor" - Let the buyer beware. Tolerance to gluten varies among individuals with celiac disease and there are limited clinical scientific data on a threshold for the amount of gluten required to initiate or maintain an immunological reaction in celiac disease patients. "Therefore there is no clear consensus on a safe gluten threshold level." The Dermatologist I see at The University of British Columbia Hospital has told me to tell people in restaurants that gluten is poison to my system and I can become very ill from ingesting gluten. They are a little more careful before telling me a dish is gluten free, and hopefully through education the cosmetic industry is going to improve its testing and cease glibly stating things as "fact" when they simply do not know. Industries that produce over-the-counter medications and vitamin supplement, especially those that may contain gluten as a binding agent, should also be scrutinized. We have come a long way, but large challenges are still ahead. One of our biggest challenges is reading the labels on these products. One almost needs to carry a magnifying glass when shopping. Cosmetics, which include hair products, soaps, perfumes and toothpastes also run us into problems, often big, "itchy" problems. The male celiac/dermatitis herpetaformis experience can also include outbreaks from any product that comes into contact with the skin and particularly those that "stay" on the hair or skin. Who would have known that sun tan lotions could contain wheat germ oil? It is difficult enough to eliminate words such as "triticum vulgare" the Latin name of wheat or "wheat germ" containing ingredients! In preparation for this article, I contacted the following companies: Avon, Clairol, Clarins, Clinique, Coty, Covergirl, Estee Lauder, Garnier, John Frieda, John Paul Mitchell, L'Oreal, Mabelline, Marcelle, Neutrogena, Olay, Pantene, Revlon, and companies that go under general all-encompassing headings such as "Life Brand". This can be a daunting task, and "gluten free" and "wheat free" are not the same thing. Some of the things that I learned in this rather massive undertaking include the rule of "Pac Man". Companies are sometimes taken over by bigger companies and when this occurs their rules change. A company that at one time did not test on animals or use machines that were cleaned prior to using products claiming to be gluten free are now glibly adopting the "new bigger and better". I was shocked to find out that some of the containers from the smaller company were still being used after these PAC MAN take-overs, to save on manufacturing costs. And, remember, once several ingredients are combined the "organic" ingredient probably ceases to be "organic". Some women (and men, you are not exempt here) expect to pay a higher price for a luxury brand assuming that the gorgeous bottle of eye cream sold at Saks for $60.00 is going to work better than the $1.99 tube on the clearance rack of a local store. Just ensure the product has not reached its "sell by" date because it may all be psychological. What you have to concern yourself about, as a celiac patient or a person with dermatitis herpetiformis, is whether there is gluten or wheat in that product. Before you splurge on an expensive product take the time to compare it to a similar product from one of their sister brands. Usually an online store (like Drugstore.com) will list the ingredients. Or you can check on a site like "Makeup Alley" which is a great resource, offering numerous reviews and you can ask questions of the extremely knowledgeable posters on this message board. Another great resource is a large paperback book, titled "Do not go to the Drugstore Without Me" written by Paula Begoin. When I purchased the books in 2001 it was in its 5th Edition. NB: This is not a book specifically for celiac disease or dermatitis herpetiformis, but it was in this book that I found out about "Glutamic Acid". It is derived from wheat gluten and is an amino acid that can have water binding properties for the skin. It also explains glycerylesters that form a vast group of ingredients that are a mixture of fatty acids, sugars, and non-volatile alcohols. These fats and oils are used in cosmetics as emollients and lubricants as well as binding and thickening agents. At the back of this book is a list of the companies that do not test on animals and those that do, but again, the PAC MAN Rule applies. I purchased the book for myself, my daughter, and daughter-in-law, specifically because when my daughter was in her twenties she seemed to think she simply must buy her shampoo from the hairdresser because only $45.00 shampoo was good enough for her hair. It was a big eye opener when she moved out of home and had to purchase it herself! I believe that the more we know about beauty products and the beauty industry the wiser our purchases will be. Consider, for instance, the cost of research and development for say, L'Oreal who develop formulas that can be used in Garnier Shampoos ($3.99) and Kerastase shampoo ($29.99) It doesn't take long to realize that it is a good idea to compare products at different ends of the price scale. Sometimes, two products from two different brands will have the same patent number. The difference is in the non-active ingredients, which give it a unique texture, scent and/or color. Also, it is wise to photo-copy, and even apply plastic covering to lists of "safe" beauty products, just as it is wise to keep a copy of "safe" and "unsafe" foods on hand when you go shopping. When you cannot even pronounce some of the words used in foods and beauty products how can you be expected to remember what is safe to apply to your hair and skin? I received a very nice letter from Teresa Menna, Manager at L'Oreal in Quebec who told me that L'Oreal has abolished gluten in the composition of L'Oreal products. However, on reading more literature I find that Garnier is a mass market cosmetic brand of L'Oreal, and L'Oreal is part of the Group P&G. P&G stands for Proctor and Gamble and P&G Beauty brands can be found on the site:_ http://pgbeautygroomingscience.com/product.php {The Company Garnier Laboratories was started in 1906 and acquired by L'Oreal in the 1970's}. I was unaware prior to researching this article that L'Oreal owned Kerastase, or that L'Oreal had purchased the MAC Cosmetic line, or that the KAO Brands Company owns Ban, Biore, Jergens and John Frieda. Here are some of the ingredients you might find in cosmetics that could indicate wheat or gluten: Avena Sativa {Latin name of oat, or "oat" term containing ingredients Hordeum distichon {Latin name of barley, or "barley" term containing ingredients} Hydrolyzed malt extract Hydrolyzed wheat protein Hydrolyzed vegetable protein Wheat germ Vitamin E Cyclodextrin Barley extract Fermented grain extract Oat (Avena sativa) Samino peptide complex Secale Cereale (Latin name of rye, or "rye" term containing ingredients) Stearyldimoniumhydroxypropyl Phytosphingosine extract Triticum vulgare {Latin name of wheat, or "wheat" term containing ingredients} Dextrin Dextrin palmitate Maltodextrin Sodium C8-16 Isoalkylsuccinyl Wheat Protein Sulfonate Yeast extract Anything with wheat in the name Thoughts: Some cute person gave the warning to ensure your lipstick is gluten free even if you don't have any skin issues. You could swallow some lipstick and get gluten in your system! Another person adds at the bottom of their e-mail to be sure to check guidelines regularly because company policies can change yearly and the list is only to be considered as "guidelines" and make-up ingredients can change each time a company changes or the scientists within that company decide to add to or delete certain products. {Makes you feel very safe as a celiac/dermatitis herpetaformis person doesn't it?} Another e-mailer suggested that mascara labeled as a "thickening agent" should be fearfully evaluated by the celiac/dermatitis herpetaformis person because the thickening agent is often "flour" and can sometimes cause eyelashes to fall out! Who knew? Noted on one e-mail, ‘So-called luxury brands can be laden with synthetic ingredients that do not cost more than their not so luxurious counterparts. True natural products that do perform, and there are a few such brands on the market, are authentic natural products that actually deliver what they promise and they truly do cost more to make because raw ingredients are much higher in cost. In fact, the cost is significantly higher when pure high grade ingredients are used. Letter received: " We have compiled a list of gluten free beauty products available on sephora.com. These products do not contain any wheat, rye or barley derivatives, and they were made in gluten-free laboratories so there is no chance of cross-contamination. But since you cannot be too careful, discontinue use of any product that triggers an attack." Letter received from Clairol:- "Gluten is a protein found in wheat, rye and barley. Although it is not added directly to our product, it may be present in fragrances. Due to the difficulty of tracing the source ingredients for the variety of fragrances used in manufacturing our products, we cannot provide specific levels of gluten content for any of our fragrance blends. Be aware that even products labeled "unscented" will still contain masking scent, therefore they may potentially contain gluten." Advertisement: World's Top Ten Cosmetic Companies : "Beauty begins on the inside, check out our post on ‘The Top Five Foods for Amazing Skin'" - Posted by The Greenster Team "I finally got up the nerve to go through my own (their) personal care products and look them up on "SKIN DEEP" and was very disappointed. The Company that makes my mascara (L'Oreal) tests on animals as does the company that makes my eyeliner (Covergirl) and my under eye concealer (Made by Physician's Formula) contains parabens" THE GREENSTER TEAM creates great articles, list the top ten cosmetic companies, what portion of the world's market they share and their hazard range. Letter received from Mabelline:- "Please find below most ingredients containing gluten (wheat and other grains). We invite you to take this list and compare it to our ingredient listings every time you buy a new product. When in doubt, do not hesitate to do your own research or contact your doctor." {Caveat Emptor} REMEMBER:- The truth is that there is no such thing as gluten free. The FDA has proposed a less than 20 ppm gluten -free standard in 2006. That was its first attempt to define the term gluten free, but the agency has yet to finalize it. The USDA is awaiting the FDA's decision before moving ahead. STILL WAITING. With the number of products making unregulated gluten free claims on the rise, the marketplace can be scary for consumers with gluten sensitivity and wheat allergies. Why hasn't the FDA finalized its 2006 definition of gluten free? As part of sweeping legislation known s FALCPA the Food Allergen Labelling and Consumer Protection Act of 2004, Congress ordered the FDA to define and permit the voluntary use of the term gluten free on the labeling of foods by August 2008. As directed, the FDA issued proposed gluten-free regulations on schedule but seems to have failed to follow through with a final ruling. There has been no explanation for the delay. Since the Cosmetic Industry is a self-regulating body it seems {appears, is assumed} that we the consumers are on our own as far as researching what goes on our skin and in our hair, because some of the letters I have received leave it to the celiac or dermatitis herpetiformis sufferer to research their own products. Even a letter from Avon states:- "Although Avon sells quality products, there is always possibility of contamination during manufacturing or changes/substitutions of ingredients. As with everything related to celiac disease, dermatitis herpetiformis and gluten Intolerance, products, ingredients and preparation may change over time. Your reactions to a specific product, ingredient may be different from the reactions of others. Like eating at a restaurant, you have to make a choice whether to consume/use a product. The list is meant to be a "guide" and does not guarantee that a product is 100% free of gluten. Dacia Lehman, Avon and GIG assume no responsibility for its use and any resulting liability or consequential damages is denied." LETTER: - Proctor and Gamble "The WHMIS rating is designed to rate raw materials and not formulated products such as ours. Nor are our consumer products required to be labeled under the Occupational Safety and Health Administration (OSHA) Hazard Communication Standard. Thus labelling of our products with WHMIS ratings or any other hazard rating should not be required by any state health and safety regulatory agencies." That letter is signed by Asela for the Pantene Team. LETTER:- May 2, 2012 - xyz@ca.loreal.com - "We have received your message and we will get back to you as soon as possible. Web Sites: Gluten-free Lifestyle: glutenfree-lifestyle.com (Gives gluten free products by type and by company) i.e.: deodorants, face & body wash, make-up, suntan lotion, toothpaste, moisturizer, lotion, shampoo & conditioner, shave cream, gels, after shave, laundry products, cleaners, soap, etc. Beauty Industry: Who Owns What? Glutino - Hidden Gluten in Health Products - Glutino & Gluten Free Pantry Blogs: www.gluten-free-cosmetic-counter.org Beauty Blogging Junkie Ebates Shopping Blog In The Makeup Lipstick Powder n'Paint Shop With a Vengeance Smarter Beauty Blog The Beauty Brains Sephora Sephora's iGoogle Beauty Portal References: Codex Standard for Foods for Special Dietary Use for Persons Intolerant to Gluten. Codex STAN 118 - 1979 ROME Government of Canada 2008 - Regulations Amending the Food and Drug Regulations (1220- Enhanced Labeling for Food Allergen and Gluten Sources and Added Sulphites) Health Canada 2007 - celiac disease and the Safety of Oats Labeling of Natural Health Products Containing Gluten - Health Canada Notice 2010

Celiac.com 10/27/2014 - There have been a few reports tying cortical myoclonus with ataxia to celiac disease. Such reports also suggest that the former is unresponsive to a gluten-free diet. A team of researchers recently set out to determine if there is any significant connection between the two conditions. The research team included Ptolemaios G. Sarrigiannis, Nigel Hoggard, Daniel Aeschlimann, David S. Sanders, Richard A. Grünewald, Zoe C. Unwin, and Marios Hadjivassiliou. They are variously associated with the Departments of Gastroenterology, Neurology, Neurophysiology and Neuroradiology at Royal Hallamshire Hospital, in Sheffield, UK, and with the College of Biomedical and Life Sciences at Cardiff University in Cardiff, UK. The team presented detailed electro-clinical characteristics of a new syndrome of progressive cortical hyperexcitability with ataxia and refractory celiac disease. Regular follow ups of over 600 patients with neurological manifestations due to gluten sensitivity revealed 9 patients with this syndrome. They found that all nine patients, six men and three women, experienced asymmetrical irregular myoclonus involving one or more limbs and sometimes face. This was often stimulus sensitive and became more widespread over time. Three patients had a history of Jacksonian march, and five had at least one secondarily generalized seizure. Electrophysiology showed evidence of cortical myoclonus. Three showed a phenotype of epilepsia partialis continua at onset. All patients showed clinical, imaging and/or pathological evidence of cerebellar involvement. All patients followed a strict gluten-free diet, and most successfully eliminated gluten-related antibodies. However, all patients still showed evidence of enteropathy, suggests that refractory celiac disease is to blame. During the study, two patients died from enteropathy-associated lymphoma and one from status epilepticus. Five patients were treated with mycophenolate and one in addition with rituximab and IV immunoglobulins. These patients showed improvement of ataxia and enteropathy, but continued to suffer the effects of myoclonus. These results indicate that myoclonus ataxia might be the most common neurological manifestation of refractory celiac disease. The clinical involvement, apart from ataxia, covers the whole clinical spectrum of cortical myoclonus. Source: Open Original Shared LinkOpen Original Shared Link

Celiac.com 01/19/2017 - When celiac disease was originally described, one of its hallmark presenting signs was extreme underweight. Along with diarrhea, digestive pain and bloating, the severe weight loss was understood to 'always' be present. Fast forward over 100 years and things have changed. Not only are many celiacs overweight, but those with gluten sensitivity are increasingly falling into that category as well. Sadly, too often doctors miss testing for these life-long conditions because of a patient's weight status. Stuck in the historical definition, these doctors have missed the current face of celiac and gluten sensitivity – a person can be any weight, and they frequently have weight to lose. We often speak of the leaky gut, formally known as a condition of increased intestinal permeability, found in the small intestine. This situation is seen most often in those with an intolerance to gluten due to their upregulation of a protein only made by humans, called zonulin. Zonulin was discovered by Dr. Alessio Fasano and his team. The zonulin molecule dictates the opening and closing of the 'gates' of the small intestine. With a surface area of over 3,000 square feet, that involves a lot of gates! While only humans make zonulin, not all humans produce it. Twenty percent do not, 50 percent has a single copy of the gene and 30 percent of the population has both copies of the gene. Those with both copies are in the unenviable position of being two times more likely to die from all causes, and the diseases they do get tend to be more severe. When a lab test was done on rats highly predisposed to develop type 1 diabetes, two thirds of them never developed the disease when they were given a drug that inhibited zonulin. I know you're going to ask, so here's the answer: A drug does not yet exist for humans that performs this function. However, it is being developed, along with a test for zonulin, by Dr Fasano. A study published last Fall in Nutrition Research titled "Potential mechanisms for the emerging link between obesity and increased intestinal permeability” and lead by TF Teixeira, found a link that could well explain the obesity issue so commonly seen. Those with an intolerance to gluten not only tend to have a leaky gut due to the above mentioned zonulin connection, but they also have weakened immune systems due to the constant assault by gluten. The weakened immune system, predominantly housed in the small intestine, is thus less able to defend the body against the normal barrage of bacteria, amoeba, parasites and the like. Why do I call the presence of these organisms 'normal'? Because it is. Now, with that said, it is NOT normal for such organisms to gain a foothold in the intestine and procreate there, but their presence is a normal byproduct of eating food, putting one's fingers in one's mouth, etc. (These are microscopic organisms so don't get too grossed out.) The point is, that a healthy immune system easily kills them; an unhealthy immune system is unable to do its job. The result is a gut full of endotoxins (toxins released from inside bacteria when they disintegrate) or other inhospitable organisms. These bad organisms thereby fight against the good ones. The good bacteria in the gut (called the microbiome) literally have a population that exceeds the number of cells in the human body by 10 times. The genes associated with this population exceeds that of the human body by 100 times. We are talking about a part of the human body, long under-appreciated, that is now being considered influential enough to be considered an 'organ' in its own right. Emerging research reveals that when this organ is overwhelmed by toxins in the gut, its composition changes as far as the balance of certain organisms (probiotics), as does its ability to absorb nutrients and expend energy (burn calories). The result is not only weight gain but increased cholesterol, triglycerides, and insulin resistance – the latter leads to diabetes, heart disease and obesity. Intestinal permeability is also thought to be influenced by a high fat and high fructose diet, plus certain nutritional deficiencies such as zinc. Another study from the Journal of Parenteral and Enteral Nutrition titled "Gut Microbiota, Intestinal Permeability, Obesity-Induced Inflammation and Liver Injury” found much the same data. They found that eating a poor diet (high fat, high fructose) could affect the microbiome in as little as one to two days – the result being heart disease and obesity. So, how do we keep our microbiome happy? Discover if you have a gluten or dairy intolerance. If so, avoid those foods. Avoid excess, bad fats including fast food, trans fats, preprocessed, prepackaged foods, etc. Avoid ALL fructose. I'm not talking about the natural fructose in fruit, of course, but all added fructose, especially high fructose corn sweeteners. If you can, get your gut tested for the presence of any inhospitable organisms that have gotten a foothold in your system. This same test will evaluate the health of your microbiome. Another test that's good, as a verifier that you're on the right track, is one for a leaky gut. We tend to recommend this one once you've been on a reparative program for a while, to confirm that we are accomplishing our goal. Do ingest 9 servings of organic vegetables and fruits each day. These are naturally healing and prebiotic, meaning that they give strength and nourishment to your probiotic population. Ensure that you are not deficient in any major vitamins and minerals such as B's, D, zinc, magnesium, calcium, etc. While it seems like a 'no brainer' to take probiotics, here's a couple of things to keep in mind. a. Use a human strain b. Get a combination of organisms such as acidophilus, bifidus, etc. c. Due to dairy products being such a commonly sensitive food, get probiotics that are free of all dairy. d. Sometimes, if you have an infection in the gut, you may feel worse on probiotics. If this occurs, stop them, of course, but realize that you should look into step 4 above. I'm happy to help you! Don't cheat. I'm sorry, but being 'good' Monday through Friday and going crazy on the weekends just isn't going to cut it if you want to be healthy. And if your health is already compromised somewhat, cheating just isn't worth the dangerous repercussions. That microbiome can change in a day or two when you've been eating a poor diet. Remember that. I hope you found this helpful. It is interesting how much we are discovering about how the health of the gut dictates so much about our general health or tendency towards disease. And it's also quite revealing how much of a culprit gluten can be when trying to optimize the function of the small intestine and its immune system. Please send me your questions or comments. I am here to help! My clinic, HealthNOW Medical Center, is a destination clinic. You don't need to live locally to receive help with your health. You are welcome to call us anytime for a free health analysis – 408-733-0400. References: Nutrition Research. 2012 Sep;32(9):637-47. Potential mechanisms for the emerging link between obesity and increased intestinal permeability.Teixeira TF, Collado MC, Ferreira CL, Bressan J, Peluzio Mdo C. Journal of Parenteral and ENteral Nutrition 2011. Gut Microbiota, Intestinal Permeability, Obesity-Induced Inflammation and Liver Injury. Thomas H. Frazier, MD1; John K. DiBaise, MD, and Craig J. McClain, MD. Volume XX Number X

Celiac.com 05/11/2015 - Many people with celiac disease know that gluten exposure can cause gut damage and trouble absorbing some vitamins and minerals, which can lead to serious deficiencies. However, even celiac who follow gluten-free diets may experience similar issues, including impaired vitamin and mineral absorption. The most common vitamin and mineral deficiencies in celiac patients include the following vitamins and minerals: B vitamins, especially B12 Vitamin A Vitamin D Vitamin E Vitamin K Iron Calcium Carotene Copper Folic acid Magnesium Selenium Zinc As a result, patients with celiac disease can develop iron-deficiency anemia, including a type that resists oral iron supplementation, and may also develop osteoporosis and osteopenia due to bone loss resulting from decreased calcium and vitamin D absorption. For these reasons, it is important that patients with celiac disease be monitored regularly to ensure that they have proper levels of vitamins and minerals in their bodies. Source: Open Original Shared Link

Celiac.com 05/22/2015 - The fact that celiac disease is commonly misdiagnosed will come as little surprise to anyone who's ever gone through what can often be a long, circuitous process of getting diagnosed. Celiac symptoms can be vague, and can mirror symptoms of numerous other conditions. Even though celiac awareness is improving, and blood screens are becoming more common, misdiagnosis remains common for people who are eventually diagnosed with celiac disease. Can you guess the most common misdiagnoses that doctors make for patients with celiac disease? The most common misdiagnoses include: Irritable bowel syndrome: People with celiac disease are often told that they have irritable dowel syndrome when they actually have celiac disease. In fact, IBS is the most common misdiagnosis for people with celiac disease. Inflammatory bowel disease: Coming in a close second to IBS, inflammatory bowel disease is another common misdiagnosis for people who actually have celiac disease. Gastro-esophageal reflux disease: People with GERD don't have any higher rates of celiac disease than the rest of the population. However, to be fair, a pretty high percentage of newly diagnosed celiac patients have reflux and/or esophageal dysmotility; which might explain the high prevalence of reflux symptoms in celiac disease patients, and the common misdiagnosis of GERD. Ulcers: Ulcers are often wrongly suspected, well before celiac disease is finally diagnosed. Viral gastroenteritis: Another very common thing doctors suspect long before they suspect celiac disease, is viral gastroenteritis. Chronic fatigue syndrome: Fatigue is a common complaint of many people with celiac disease, so maybe it's understandable why many people with celiac disease find themselves with a misdiagnosis of chronic fatigue, rather than an accurate diagnosis of celiac disease. Allergies: Many people find themselves wrongly diagnosed with environmental allergies long before they are diagnosed with celiac disease. Parasitic infection: Celiac disease symptoms can mirror symptoms of certain gut parasites, which is one reason that many people with celiac disease find themselves being checked for parasites long before they get checked for celiac disease. Gallbladder disease: Celiac disease symptoms can mirror symptoms of gallbladder disease, which is why many people who actually have celiac disease find themselves diagnosed with gallbladder problems. Colitis: Another common culprit for misdiagnosis is colitis, which shares many symptoms with celiac disease. Cystic fibrosis: Many people don't realize that in a number of cases, the symptoms of celiac disease can lead doctors to suspect cystic fibrosis, rather than celiac disease, thus prolonging diagnosis, treatment and recovery. Psychological dysfunction: In many cases, celiac disease symptoms can be so hard to pin down that doctors find themselves wondering if the symptoms aren't really in the patient's head. In their quest for diagnosis, many people with celiac disease have been referred to a psychologist, rather than evaluated for celiac disease. Lactose intolerance: Lactose intolerance is a common misdiagnosis in celiac patients, because the mucosal damage from gluten leaves them unable to digest lactose-containing products. In addition to being frustrating and painful, misdiagnosis of celiac disease is a big deal because, left unaddressed, the damage done by the disease continues unabated, and can snowball into further health and wellness problems. Have you, or anyone you know, suffered through misdiagnosis before being diagnosed with celiac disease? Share your story in our comments section. Source: US Pharmacist. 2014;39(12):44-48.

Celiac.com 07/13/2017 - Until recently, duodenal biopsy was considered the gold standard for diagnosing celiac disease, but that is changing. A number of studies have shown that celiac disease can be diagnosed using serological tests alone, but many clinicians have yet to embrace this approach. In both retrospective and prospective studies, one research team showed that certain IgA-tissue transglutaminase antibodies levels can predict celiac disease in adults 100% of the time. After making some adjustments to the analytical method for measuring the antibody, a team of researchers recently set out to to determine whether such serum tests can reliably diagnose celiac disease in large numbers adult patients without the need for small bowel biopsy. The research team included GKT Holmes, JM Forsyth, S Knowles, H Seddon, PG Hill, and AS Austin. They are variously associated with the Royal Derby Hospital, the Department of Pathology, and the Derby Digestive Diseases Centre at the Royal Derby Hospital in Derby, UK. For their study, the team conducted a retrospective analysis in an unselected series of 270 adult patients who underwent small bowel biopsies and the measurement of serum IgA-tissue transglutaminase antibody levels from 2009 to 2014. At an IgA-tissue transglutaminase antibody cut-off greater than 45 U/ml (>8×upper limit of normal+2SDs) the positive predictive value for celiac disease in this cohort was 100%; 40% of cases were above this cut-off. The team found that they could use IgA-tissue transglutaminase antibody levels to reliably diagnose celiac disease in a high proportion of these adult patients. This study adds to the growing body of evidence that supports the diagnosis of celiac disease without a mandatory small bowel biopsy. As a realist of these findings, the study team has changed the diagnostic guidelines for their center, and will now make celiac diagnosis based on cut-off levels of IgA-tissue transglutaminase. This is exciting news. For many, many years, the biopsy was considered the gold standard for diagnosing celiac disease. By eliminating biopsies in favor of IgA-tissue transglutaminase levels, diagnosing celiac disease could become much easier and even cheaper. Do you have celiac disease? Did you receive a biopsy for diagnosis? How do you feel about celiac diagnosis without biopsy? Share your thoughts below. Source: Eur J Gastroenterol Hepatol. 2017 Jun;29(6):640-645. doi: 10.1097/MEG.0000000000000841.

Celiac.com 10/22/2014 - For my Girl Scout Gold Award I created a poster, pamphlet, and informational sheets as one part of my project. The poster covers definitions, symptoms, statistics, and links for further information. The pamphlet was created with the title of “Is Eating Gluten-Free Right for Me?” (See Download Link Below). The different parts of the pamphlet include “Having Celiac”, “Having a Gluten Sensitivity”, “Misconceptions about the Gluten Free Diet”, “Being Tested for Celiac”, and “About the Author”. The informational sheets were based off of personal experience and were designed to help people who were already on the diet and looking for help. They were titled “Going to a Party”, “Going out to Dinner”, “Cross Contamination”, and “Hidden Gluten”. The next part of my project was to share my materials with the public. I contacted many health food stores in order to have a table in front of the store where I could set up my information. I also contacted local libraries. I set up my display at my local library for the month of August. I would go to the library on occasion and stand with the display to talk about my project and answer any questions. I also brought my project to a library in the town next to mine. I contacted different health food stores, pharmacies, and doctor’s offices to put my pamphlet in. I was able to put a good number of pamphlets in these locations. To reach out to people who have celiac, I went to two celiac support group meetings and a walk for celiac disease. While at the support group meetings I explained my project, gave out gluten free food samples, and handed out the materials I created. At the walk, I had a table set up where I told people about my project and handed out my materials.

The following detailed explanation of serological tests for celiac disease was written by Tom Ryan, Technical Service Specialist, INOVA Diagnostics, Inc. There has been a lot of discussion about serological testing for celiac disease recently, specifically regarding tTG (tissue Transglutaminase) testing. I will try to answer some of the many questions that have appeared on this list about all of the tests. First, and this applies to any of the blood tests, you must currently be on a gluten containing diet for the tests to be accurate. Antibodies are produced by the immune system in response to substances that the body perceives as threatening. The immune response that your body produces is its response to being exposed to gluten in the diet and its subsequent effect on the intestinal mucosa. If there is no gluten in the diet, then there is no response that we can measure. A brief change in diet will not have a noticeable effect. If you have been gluten free for a week or so, it will not make any great difference. The response might be marginally less but the difference is insignificant because the body has not had time to respond to the change. Conversely, if you have been gluten free for a protracted period of time and decide to be tested, a brief challenge of a couple of weeks is not enough to elicit a response and get an accurate test. There are several steps that take place to generate an immune response and it takes time both for the positive reaction when gluten is present and to clear the antibodies when gluten is eliminated. There has been a great deal of discussion about how much and how long a challenge should be and there is no consensus. Talk with your Doctor. My personal feeling is that the minimum is 2 slices of bread per day for 6 weeks to get an accurate test but I would not try to second-guess the Doctor. There are basically four tests that can be performed to aid in diagnosing celiac disease. Notice that I say they will aid in diagnosing celiac disease. Immunology is fairly accurate but it is far from being an exact science. All of the lab tests, regardless of the type or source, are presented as aids to diagnosis. They should not be used alone as a basis for diagnosis but rather are intended to be considered in conjunction with the physical examination of the patient as well as the reported symptoms, etc. by a trained physician. There has been a great deal of confusion about what the tests are and I hope to alleviate some of the misunderstandings. There are many terms that we hear. tTG, IgA, IgG, ELISA, etc. What are all of these? Some contributors to the list make reference to the IgA or IgG test or to the ELISA test. These labels are incomplete for our purposes and could be referring to any number of different tests. We all have, within our bodies, a family of closely related although not identical proteins which are capable of acting as antibodies. These are collectively referred to as immunoglobulins. Five major types of immunoglobulins are normally present in the human adult. They are IgG, IgA, IgM, IgE and IgD. Each of these is a shorthand way of writing immunoglobulin gamma G (or A or M, etc.) and they each perform a different function in our systems. IgG is the principal immunoglobulin in human serum. It is important in providing immunity in a developing fetus because it will pass across the placental barrier. IgA is the principal immunoglobulin in secretions from respiratory and intestinal mucosa. IgE is a gamma globulin produced by cells lining the intestinal and respiratory tracts. It produces the antibodies associated with most hypersensitivity (allergic) responses. It is associated with asthma, hay fever, etc. IgM is a globulin formed in almost every immune response in the early part of the reaction. IgD is a rare protein present in normal sera in a tiny amount. These designations refer to the type of protein that is carrying the antibody in question. Both IgG and IgA subtypes of anti-gliadin antibody are produced, hence we refer to them as IgG gliadin or IgA gliadin. Collectively they are anti-gliadin antibodies. Anti-Gliadin Antibodies: Both IgA and IgG anti-gliadin antibodies (AGA) are detected in sera of patients with gluten sensitive enteropathy (celiac disease). IgG anti-gliadin antibodies are more sensitive but are less specific markers for disease compared with IgA class antibodies. IgA anti-gliadin antibodies are less sensitive but are more specific. In clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for celiac disease. Therefore, a positive result is a strong indication that the patient has the disease but a negative result does not necessarily mean that they don not have it. False positive results are rather uncommon but false negative results can occur. On the other hand, the IgG anti-gliadin antibodies are 91% specific and have an 87% sensitivity. This means that they will show positive results more readily but there is not as strong a correlation with celiac disease. It is less specific. Patients with other conditions but not afflicted with celiac disease will occasionally show positive results. IgG anti-gliadin antibodies are detectable in approximately 21% of patients with other gastrointestinal disorders. This test might yield false positive results but is less likely to yield false negative results. A sensitive testing protocol includes testing for both IgA and IgG anti-gliadin antibodies since a significant portion of celiac patients (approx. 2-5%) are IgA deficient. This combined IgA and IgG anti-gliadin antibody assay has an overall sensitivity of 95% with a specificity of 90%. The type of test used to detect the anti-gliadin antibodies is called an ELISA. This is an acronym and it stands for Enzyme Linked Immuno-Sorbent Assay. ELISA is not a test in itself. It is a method of testing and it is a relatively simple test to perform. It involves putting a measured amount of diluted patient serum into the wells of a specially constructed and prepared plate and incubating it for a period of time with various chemicals. The end result is a color change, the intensity of which is dependent upon the concentration of anti-gliadin antibody (or other protein being measured) in the patient serum. The ability of this colored solution to absorb light at a particular wavelength can be measured on a laboratory instrument and mathematically compared with solutions that contain a known amount of anti-gliadin antibody to arrive at a number for the amount of antibody present. The sample can then be classified as negative, (0-20 units); weak positive, (21-30 units); or moderate to strong positive if greater than 30 units. The purpose of testing for anti-gliadin antibodies includes, in addition to diagnosis of gluten sensitive enteropathy, monitoring for compliance to a gluten free diet. IgA gliadin antibodies increase rapidly in response to gluten in the diet and decrease rapidly when gluten is absent from the diet. The IgA anti-gliadin antibodies can totally disappear in 2-6 months on a gluten free diet, so they are useful as a diet control. By contrast, IgG anti-gliadin antibodies need a long time, sometimes more than a year, to become negative. The reverse is also true. That is, a patient with celiac disease who has been on a gluten free diet and tests negative for IgA anti-gliadin antibodies, will show a rapid increase in antibody production when challenged by gluten in the diet. Approximately 90% of challenged patients will yield a positive IgA anti-gliadin result within 14-35 days after being challenged. The IgG antibodies are somewhat slower. Endomysial Antibodies: IgA class anti-endomysial antibodies (AEA) are very specific, occurring only in celiac disease and DH. These antibodies are found in approximately 80% of patients with DH and in essentially 100% of patients with active celiac disease. IgA endomysial antibodies are more sensitive and specific than gliadin antibodies for diagnosis of celiac disease. Antibody titers (dilutions) are found to parallel morphological changes in the jejunum and can also be used to reflect compliance with gluten-free diets. Titers decrease or become negative in patients on gluten free diets and reappear upon gluten challenge. The test for anti-endomysial antibodies is more subjective and more complicated for the lab to perform than the anti-gliadin assays. It involves serially diluting some of the patients serum, that is, diluting it by ½ then ¼, 1/8, 1/16, etc. and putting these dilutions on a glass slide that has some sort of tissue affixed to it. The slide is then processed with various solutions and examined under a fluorescent microscope to determine if any of that serum binds to any of the proteins in the tissue. If so, then that patient is confirmed as having antibodies to that particular protein. This method of testing is called an IFA or sometimes IIFA. It stands for Indirect Immuno-Fluorescent Assay. The selection of which tissue slide to use is determined by what specific protein, hence which antibody, you are specifically looking for. Endomysial antibodies react with the endomysium, which is a sheath of reticular fibrils that surround each muscle fiber. Therefore, to detect endomysial antibodies, you would want to use a tissue substrate that contains a lot of muscle tissue. The substrate used most often for this assay is distal sections of the esophagus. These are very thinly sliced and fixed to the slide. They contain muscle fibers and not much else so there is a lot of endomysium available to react with the anti-endomysial antibodies. Reading this test involves viewing the reacted slides with a fluorescent microscope to make the determination. This requires a highly skilled and trained eye and, of necessity, is somewhat subjective. You are looking for a green fluorescence in the endomysium covering the muscle fibers. The test is reported as the titer or final dilution in which the fluorescence can still clearly be seen. As you can imagine, this is very subjective. There are no standardized values and it is up to the judgment of the particular technician what the endpoint titer is. Recently, (1998) the endomysial antigen targeted by the anti-endomysial antibodies was identified as the protein cross-linking enzyme known as tissue transglutaminase (tTG). This has enabled the production of an antigen specific ELISA assay incorporating tTG as a reliable and objective alternative to the traditional and subjective Immunofluorescence based assays. In clinical trials, the correlation with the endomysial IFA assay has been shown to be close to 100%. This is a test that has been very well received in the professional community. It is an ELISA, like the anti-gliadin antibody test and, as such, is not subject to interpretation like the IFA. That is the greatest advantage to this new test! With this or any ELISA, the response is measured on an instrument that calculates the amount of light of a particular wavelength that is absorbed by the solution and prints out a numerical result. There is no chance of human error skewing the results because there is no judgment call involved. The ELISA plate, regardless of what you are testing for, is processed with at least three control sera (sometimes as many as eight) in addition to the unknown sample being tested. There is a negative serum and at least two positive sera containing different levels of the antibody being tested. There are specific requirements for the absorption levels of these three controls. That is, each of them has a minimum or maximum (or both) number that must be seen by the instrument in order for it to be a valid test. If there is any variance from these expected numbers, it is an indication that something went wrong and the test results are discarded and the test repeated. There is therefore no way the technician could report inaccurate results, (assuming they diluted the sample correctly). Either the test was valid, and you can rely upon the accuracy of the result, or the test is invalid, and the entire result discarded. If any error was made during the processing of the ELISA plate, it would result in the control sera numbers being out of range and the entire test result would be thrown out. In summary, the tTG ELISA is measuring the same thing that the endomysial IFA is measuring but with a method that is more sensitive and specific and not subject to interpretation. IgA class Reticulin antibodies are found only in Celiac disease and dermatitis herpetiformis. These antibodies are found in approximately 60% of celiac disease patients and 25% of DH patients. This test is falling into disuse because of the limited utility and the availability of better tests. It is an IFA performed on a tissue substrate with all the attendant problems that go along with it. The development of all of these serum assays has tremendously simplified the diagnosis of celiac disease and improved the accuracy as well. The original criteria for diagnosis according to the European Society for Pediatric Gastroenterology and Nutrition, (ESPGAN), involved a year of arduous studies with: An initial positive gut biopsy; 6 months on a gluten free diet; A second, negative gut biopsy; A gluten challenge for 6 months and; A third, positive gut biopsy. The revised ESPGAN criteria call for positive results in two of the serological tests confirmed by a single positive biopsy. In practice, many gastroenterologists are utilizing the serologies in conjunction with a controlled diet and the clinical presentation to form a basis for diagnosis without the need for the invasive procedure. Through the auspices of the Celiac Disease Foundation and others, a professional symposium and workshop was organized earlier this year in Marina Del Rey, California with participants from Europe as well as the U.S. to establish standards for reporting test results. This should improve testing and diagnosis even more. At the conclusion of this conference a Celiac Disease Standardization Committee was formed to investigate and make recommendations on a standardized method of reporting results.

Celiac.com 07/15/2023 - Summary of the “Pathogenesis and Epidemiology of Celiac Disease” Clinical Symposium sponsored by the American Gastroenterological Association at the Digestive Disease Week international conference, San Francisco, May 22, 2002. Dr. Thomas T. MacDonald of the University of Southampton (UK) School of Medicine discussed new insights into the pathogenesis of celiac disease and the role that the DQ2 (gene) molecule plays in controlling the T-cells of the small intestinal mucosa to produce the lesion or flat mucosa. He explained that the lesion is created when the T-cell immune response in the gut wall results in changes in the gut shape on a microscopic level from tall villi and short crypts to a flat mucosa with an increase in mucosa thickness. Although it was once believed that the damaged gut would quickly return to its normal shape on a gluten-free diet, Dr. MacDonald stated that the flat mucosa appears to be a stable structure. It may therefore take a celiac patient a long time to get better due to the length of time it takes for the gut to revert back to its normal shape. Dr. MacDonald explained that gliadin peptides associate with DQ2 and DQ8 HLA molecules and put themselves into the grooves so that they are seen by the T-cells. Researchers now believe that Tissue Transglutaminase (tTg) alters the gliadin peptide so that it binds to DQ2. Once bound to the HLA, the altered gliadin peptide controls the T-cell response. Dr. MacDonald also described the case of a woman with cancer who was treated with interferon (IFN). The IFN-alpha used to treat her cancer may have triggered her case of clinical celiac disease. IFN-alpha can stimulate T-cells and a viral infection could activate IFN-alpha. Dr. Alessio Fasano, Co-Director of the University of Maryland Center for Celiac Research, discussed the prevalence of celiac disease on a local and worldwide scale. Dr. Fasano said that in the 1970’s, celiac disease was thought to be limited to the pediatric population, but since 1998 there has been a surge of adult cases. He believes that adult celiac disease in the U.S. has been overlooked due to the fact that adults tend to present more atypical symptoms. Also, pathologists need to be better trained to not overlook the majority of patients with only partial villous atrophy. He believes that in the vast majority of cases a person with celiac disease will not see a gastroenterologist, so other physicians and specialists need to have a heightened awareness of the disease. On a worldwide scale Dr. Fasano stated that the overall prevalence of celiac disease is about 1 in 266, on which he commented: "on a global scale, this is by far the most frequent genetic disease of human kind." Dr. Ciaran Kelly, of the Beth Israel Deaconess Medical Center (Boston), had interesting insights into both celiac disease and refractory sprue. Dr. Kelly explained that his responsibility when seeing a patient with possible refractory sprue is to first confirm that the patient really has celiac disease and that they are adhering to a gluten-free diet. Dr. Kelly explained that some patients would “prefer an iron shot” than have to adhere to the diet. Differences from patient to patient in their sensitivity to gluten can also affect their adherence to the diet. According to Dr. Kelly, in celiac disease the lamina propria lymphocytes are stimulated by gluten to mediate the disease, whereas in refractory sprue, intraepithelial lymphocytes no longer require gluten to cause damage. Essentially "they’re on auto-pilot," but he emphasizes that refractory sprue is a rare disease and doctors should refer patients to knowledgeable and competent dieticians for dietary management. Dr. Kelly said that patients who adhere to a gluten-free diet but do not respond to it should also be evaluated for other disorders that can masquerade as celiac disease, especially if the patient is IgA endomysial antibody (EmA) negative or HLA DQ2 or DQ8 negative. Not every flat mucosa is celiac disease, but could instead be a differential diagnosis such as cow’s milk protein intolerance. Other unusual immunological disorders could also be mistaken for celiac disease. Doctors should consider these if the patient’s IgA EmA or tTg antibody tests were negative at diagnosis. HLA typing should also be considered in this case, after other possibilities have been eliminated and the patient is not responding to a gluten-free diet. If a patient’s HLA DQ2/DQ8 test is negative the likelihood that they have celiac disease is much lower. He advised that antibody blood tests for follow-up were helpful but not to be relied upon. Dr. Kelly also emphasized that patients are being seen more frequently who have subtle manifestations of celiac disease and who were previously diagnosed or misdiagnosed with irritable bowel syndrome and other disorders. Some patients with celiac disease may show improvement in their biopsy and blood test results, but their symptoms may still persist. He emphasized that doctors need to be aware that just because a patient has celiac disease it does not mean that they do not also have another disorder.

Celiac.com 09/01/2017 - A recent story by Buzzfeed does little to answer the question of whether Cheerios and other General Mills cereals are actually gluten-free and safe for people with celiac disease. There are a number of folks in the gluten-free community who complain that General Mills is making people sick by selling Cheerios that they know to be contaminated with gluten due to a faulty sorting process. Because General Mills uses a flawed sorting process, the story goes, their boxes of Cheerios are subject to gluten "hot spots," which is making some gluten-sensitive folks sick, thus the complaints. They point to regular complaints logged by the FDA to argue that Cheerios are clearly not gluten-free, and thus not safe for people with celiac disease. Comment sections on articles covering this topic show that plenty of people claim that Cheerios makes them sick, and triggers gluten-related symptoms. But, one useful measure of the basic scope of an issue is numbers. What kind of numbers are we talking about? How many complaints? How many boxes of Cheerios? It's important to realize that General Mills produces huge numbers of Cheerios each week. How many exactly? Well, according to their website, General Mills ships 500,000 cases of Cheerios each week. At about 12 boxes per case, that's about 6 million boxes each week, or 24 million boxes each month. We know that the FDA received a number of consumer complaints in 2015, when a mix-up at a Cheerios plant in California led to mass gluten contamination, and eventually to a full recall of 1.8 million boxes by General Mills. During that three month period, after the gluten contamination but prior to the recall, when many consumers were eating Cheerios made with wheat flour, the FDA says it received 136 complaints about adverse reactions to the product. So, during the 90 days when we know there was gluten contamination in nearly 2 million boxes of Cheerios, when people were definitely having gluten reactions, the FDA got 136 complaints. During that time General Mills shipped about 72 million boxes, and later recalled nearly 2 million of those due to gluten contamination. That's a complaint rate of about one complaint per 529,411 total boxes, and about one complaint for every 5,000 people with celiac disease; if each person with celiac ate 1 box, and the complaints came only from people with celiac disease. (Obviously this is simplified assumption for discussion purposes). Let's imagine another 2 million gluten-contaminated boxes got to consumers. Again, imagine that 1% of those buyers were celiac, so that 20,000 boxes of the 2 million went to celiacs—one box each. 146 complaints for 20,000 boxes is about 1 complaint per 140 boxes, give or take, for each person with celiac disease. That seems like a substantial complaint rate. So, how does that rate compare to the current rate, after the recall? Since the beginning of 2016, the FDA has received 46 reports of people with celiac disease or sensitivity to gluten or wheat linking their illness to General Mills cereals, including Cheerios and Lucky Charms. Let's forget about Lucky Charms for a minute, let's focus on Cheerios. During the 18 months from January 2016 to July 2017, General Mills has shipped something like 450 million boxes. That's about one complaint for every 10 million boxes of Cheerios, or about one complaint for every 100,000 people with celiac disease. And those numbers don't include Lucky Charms, which account for some portion of the 46 complaints since early 2016. If General Mills is having an issue with sorting oats, then why have complaint ratios gone down so sharply? Also, General Mills uses its optically sorted gluten-free oats for other products. The FDA is certainly taking all of this into account. When they get complaints, they look at large amounts of data to help them put things into perspective. Has the FDA seen corresponding numbers of complaints for different General Mills products made from the same oat sorting process? It doesn't seem so. Celiac.com has covered the gluten-free Cheerios story from the beginning, and will continue to do so. We stand on the side of science, and accurate information. Beyond the obvious gluten-contamination that led to the recall, we have been skeptical of claims that General Mills' sorting process is flawed, and that their products, including Cheerios are routinely contaminated with gluten. If this were true, we think the numbers would be very different, and that the pattern of official complaints would reflect that reality. We also feel that General Mills would be facing down lawsuits from hungry trial lawyers looking to put a big trophy on the wall. We have simply not seen any good evidence that supports claims that Cheerios and other General Mills products are contaminated with gluten "hotspots" that cause reactions in people with celiac disease. We have also not seen evidence that rules out adverse oat reactions as the cause of many of these claims. If someone out there has different numbers, or better information, we are all ears. However, until we see convincing evidence to the contrary, Celiac.com regards Cheerios and other General Mills products as safe for people with celiac disease and gluten-sensitivity. We do offer the caveat that people should trust their own judgement and avoid any food they think makes them sick. Stay tuned for more on this and other stories on gluten-free cereals and other products. Read more at BuzzFeed.com and GeneralMills.com.

Celiac.com 05/16/2011 - Nearly 75% of the 24 million Americans suffering from autoimmune disease are women, according to the American Autoimmune Related Diseases Association (AARDA). Women appear to mount larger inflammatory responses than men when their immune systems are triggered, thereby increasing their risk of autoimmunity. The fact that sex hormones are involved is indicated by the fact that many autoimmune diseases fluctuate with hormonal changes such as those that occur during pregnancy, during the menstrual cycle, or when using oral contraceptives. A history of pregnancy also appears to increase the risk for autoimmune disease. The sex hormone that is commonly low in such women is Dehydroepiandrosterone (DHEA). This is a natural steroid and is produced by the adrenal glands, the reproductive organs and the brain. DHEA is used by the body to make the male and female hormones, testosterone and estrogen respectively, and is known to have anti-inflammatory effects. It has been proposed that a DHEA deficiency is a contributing factor in autoimmune diseases. Last year a study was done to look at precisely that effect. The study’s conclusions have been supported by other, similar research and I think you’ll find it quite interesting. The Journal of Clinical Endocrinology & Metabolism Vol. 94, No. 6 2044-2051(2009) published an article entitled “Low Serum Levels of Sex Steroids Are Associated with Disease Characteristics in Primary Sjogren’s Syndrome; Supplementation with Dehydroepiandrosterone Restores the Concentrations”. The authors investigated whether there was a relationship between steroid levels and the disease characteristics of Sjogren’s. They based their study on the known data that DHEA not only declines with aging but is reduced in Sjogren’s, an autoimmune disease. The study was populated by 23 post-menopausal women with primary Sjogren’s syndrome and subnormal levels of DHEA. The investigation was a controlled, double blind crossover study, conducted over a 9 month period, where DHEA was assessed by sophisticated laboratory measurements and typical symptoms of Sjogren’s such as dry mouth and eyes and salivary flow rates were similarly assessed. Results revealed a strong correlation between low DHEA and Sjogren’s symptoms. DHEA and its sex hormone metabolites (testosterone and estrogen) were found to increase with DHEA supplementation but not with the placebo. Symptoms such as dry eyes were seen to improve as estrogen levels The researchers concluded that the disease manifestations of primary Sjogren’s syndrome were associated with low sex hormone levels and the supplementation of DHEA allowed the body to transform into androgens, testosterone and estrogen, with testosterone production predominating. Please allow me to add some personal interpretation. For the most part I agree with the premise and applaud the results. The facts that autoimmune disease occurs more often in women, that women frequently have low DHEA, and that androgens have anti-inflammatory effects that can benefit autoimmune disease are all true. But should we simply give such women DHEA and call it a day? I don’t think so. I propose that we do three things: First, evaluate hormonal levels in women regularly; Second, address WHY their hormonal levels are imbalanced; And third, when supplementing with hormones such as DHEA, ensure that the delivery system is one that mimics what the body does naturally. Remember that autoimmune disease can begin many years before the first symptoms become manifest. Therefore evaluating hormonal levels in our younger women is a good idea. When I find DHEA levels that are low, my first order of business is to assess why. Frequently it is due to a phenomenon known as “pregnenelone steal” that occurs when the adrenal glands are under stress. It is a common occurrence and one of the fantastic abilities of the human body to shift from one pathway to another when under stress. The “steal” pathway diverts the body away from making sex hormones and instead it makes more “stress” hormones. So while adding some DHEA into the mix might very well help, does it make sense to find out WHY it’s being diverted away from making sex hormones? I hope so because it’s the very foundation of the medicine that we practice—functional medicine. Once you understand the root cause of the deficiency you can take steps to truly remedy it rather than simply covering it up by taking DHEA. Not to keep hitting you over the head with this concept, but supplementing with DHEA as your sole treatment misses the underlying cause since the body is designed to make adequate quantities of DHEA. A common reason for the diversion or “steal” pathway to become activated is adrenal stress from poor absorption of nutrients, unstable blood sugar and the presence of infections—all problems we see with the gluten intolerant patient! While I’m not implying that every autoimmune patient has a gluten intolerance, it certainly warrants screening all of them because of its high prevalence. As we travel down the road to optimal health through avoiding any food the body isn’t tolerating well, improving the integrity of the small intestine and normalizing adrenal function, there are certainly times when hormonal supplementation is beneficial. I don’t recommend the oral route because the first place the hormone travels is to the liver and this can be burdensome to that organ. When the body makes hormones naturally it delivers them straight to the bloodstream. In an effort to mimic that delivery system we use a buccal route (placed between cheek and gum in the mouth) that does a good job in bringing the hormone directly to the bloodstream and bypassing the liver and digestive tract. Autoimmune diseases comprise the third leading cause of death in our country and research strongly suggests that its rapid increase is due to environmental factors, especially those that weaken the small intestine. I am committed to earlier diagnosis while the disease is still remediable, as well as overall reduction of incidence through addressing digestive health. I hope you find this informative. Please share this information with those who have autoimmune disease themselves as well as in their family.

Celiac.com 01/22/2018 - Celiac disease is marked by HLA-DQ2/8-restricted responses of CD4+ T cells to gluten from wheat, barley or rye. Currently, in order to properly diagnose celiac disease based on serology and duodenal histology doctors need patients to be on gluten-containing diets. This is a problem for many people, who prefer not to begin ingesting wheat again once they have adopted a gluten-free diet. This can present challenges for doctors attempting to diagnose celiac disease. It is known that HLA-DQ–gluten tetramers can be used to detect gluten-specific T cells in the blood of patients with celiac disease, even if they are on a gluten-free diet. The team set out to determine if an HLA-DQ–gluten tetramer-based assay can accurately identify patients with celiac disease. The research team included Vikas K. Sarna, Knut E.A. Lundin, Lars Mørkrid, Shuo-Wang Qiao, Ludvig M. Sollid, and Asbjørn Christophersen. They are variously affiliated with the Department of Immunology, Oslo University Hospital – Rikshospitalet, Norway; the KG Jebsen Coeliac Disease Research Centre, University of Oslo, Norway; the Department of Gastroenterology, Oslo University Hospital – Rikshospitalet, Norway; the Department of Medical Biochemistry, Oslo University Hospital – Rikshospitalet, Norway; and with the Centre for Immune Regulation, Oslo University Hospital – Rikshospitalet and University of Oslo, Norway. For their study, the team produced HLA-DQ–gluten tetramers and added them to peripheral blood mononuclear cells isolated from 143 HLA-DQ2.5+ subjects. There were a total of 62 subjects with celiac disease on a gluten-free diet, 19 subjects without celiac disease on a gluten-free diet due to perceived sensitivity, 10 subjects with celiac disease on a non-gluten-free diet, and 52 seemingly healthy individuals as control subjects. The team used flow cytometry to measure T cells that bound HLA-DQ–gluten tetramers. They then used researchers blinded to sample type, except for samples from subjects with celiac disease on a gluten-containing diet, to conduct laboratory tests and flow cytometry gating analyses. They also conducted analysis on test precision using samples from 10 subjects. They found that an HLA-DQ–gluten tetramer-based test that detects gluten-reactive T cells identifies patients with and without celiac disease with a high level of accuracy, regardless of whether patients are on a gluten-free diet. This test could conceivably allow celiac diagnosis while suspected patients are still on a gluten-free diet. The team notes that their results require a larger study for validation. Could reliable celiac diagnosis be done without making patients consume gluten? Will that become common? Stay tuned for more developments. Source: Gastrojournal.org

Celiac.com 04/07/2021 - It is not uncommon for people with celiac disease to have ongoing digestive symptoms and other systemic problems, even on a gluten free diet. Even though celiac disease is becoming better understood each year, much remains to be learned about the effects of the disease on the body and its ongoing symptoms. Not everyone with celiac disease who goes on a gluten-free diet will recover, according to the following study: "After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies)." While this article is intended to address celiac-related issues that you may want to explore with your health care provider, it is not intended as medical advice. Please consult a physician for any medical advice related to celiac disease or any issues mentioned in this article. Celiac Disease Follow Up Treatment A number of follow up tests are recommended, both immediately after a celiac disease diagnosis, and on an ongoing basis, including: Blood work for vitamin and mineral deficiencies Micronutrient deficiencies are common in adults with celiac disease, as are vitamin and mineral deficiencies. The most common vitamin and mineral deficiencies in celiac patients include the following vitamins and minerals: B vitamins (especially B12); Vitamin A; Vitamin D; Vitamin E; Vitamin K; Iron; Calcium; Carotene; Copper; Folic acid; Magnesium; Selenium; and Zinc. Thyroid Screening Because celiac disease is linked to autoimmune thyroid disease, thyroid screening is recommended for newly diagnosed celiac disease patients. (Note: Patients on thyroid replacement and other medications may need frequent monitoring for dosage adjustment as their absorption improves.) Bone Density Scan Up to 75% of celiac patients have low bone mineral density. Because of this, bone density scans are recommended for newly diagnosed celiacs. Liver Enzymes Research from Stanford University School of Medicines Celiac Management Clinic is noting continued absorption problems with many individuals who are on a gluten free diet. A 72 hour quantitative fecal fat test and a 25-gram xylose sugar absorption test can help diagnose continued absorption problems. Healing progress on the gluten-free diet may be monitored by re-testing whichever diagnostic blood test was initially highest, at an interval of 6 - 12 months. Children are likely to heal within a few months; adults may take a few years, and some may never totally heal. Note: Calcium and Iron status will improve in most individuals, even without supplements, once the gut heals. Several doctors recommend NOT prescribing drugs such as Fosamax and Evista until after the intestine heals and more calcium is being absorbed from the diet. Celiac Disease and Ongoing Symptoms After a Gluten-Free Diet Most individuals will experience a significant decrease of symptoms within a few weeks or months of starting a gluten free diet. However, some individuals may continue to experience significant digestive problems or may have a relapse of symptoms. Some possible explanations are summarized below: Hidden Gluten Exposure New research shows that most people with celiac disease are regularly exposed to gluten, even when they are trying to be careful. Moreover, for most celiacs, gluten exposure is usually ongoing and silent. This article explores how much gluten exposure do celiacs get on a gluten-free diet. Moreover, celiac patients are really bad at judging gluten-exposure based on symptoms. Look for any possible sources of gluten exposure. Consider binders in medication, cross contamination, misunderstanding of the strictness required of the diet, etc. Repeat blood tests might give an indication of continued gluten exposure; however these may not be sensitive enough to note low level exposure. Many celiacs report positive results after taking AN-PEP enzymes (GliadinX is a brand that we've reviewed) before meals whenever they eat outside their homes. These enzymes have been shown in multiple studies to effectively break down small amounts of gluten in the stomach, before it reaches your intestines. Lactose Intolerance Enzymes needed to digest lactose are manufactured by the intestinal villi, which, in celiacs, are damaged by exposure to gluten. Many people with celiac disease suffer intolerance to casein, a protein found in dairy products. Often, this intolerance subsides as the gut heals. Lactose intolerance is a common misdiagnosis in celiac patients, because the mucosal damage from gluten leaves them unable to digest lactose-containing products. Testing for lactose intolerance can be done with a hydrogen breath test, Lactose H2. Suggested treatment includes using an over-the-counter lactose enzyme when ingesting dairy products. Re-colonizing the small intestine with probiotic bacteria (see probiotics below) is also helpful. How is lactose intolerance related to celiac disease? Helicobacter Pylori A study by Villanacci, et. al, published 8/28/2006 in the American Journal of Gastroenterology noted that 44% of individuals diagnosed with celiac disease tested positive for helicobacter pylori at the time of, or within 1 year of their celiac disease diagnosis. Interestingly, patients with helicobacter pylori colonization have a decreased risk of celiac disease. An Iranian study showed a connection between helicobacter pylori and celiac disease. Small Bowel Bacterial Overgrowth In a report published in the American Journal of Gastroenterology, Vol. 98, No. 4, 2003 of 15 persons with continuing symptoms, 10 showed evidence of overgrowth of bacteria within the small bowel. Testing included Lactulose H2 breath testing. Suggested treatment includes the non-systemic, prescription antibiotic, Rifaximin (800 mg. per day for one week). Note that the antibiotic used is called Rifaximin in England and Xifaxam in the U.S. Digestive function should also be evaluated as the underlying cause of SBBO. For more information, check these related articles: Breath Tests for the Non-invasive Diagnosis of Small Intestinal Bacterial Overgrowth: A Systematic Review With Meta-analysis, and Rosacea and Small Intestinal Bacterial Overgrowth (SIBO). Yeast Overgrowth Some individuals report continuing symptoms due to overgrowth of yeast. Testing includes blood antibody testing for Candida. Suggested treatment includes ½ tsp Nystatin powder (mix with water), twice a day and 200 mg Ketoconizole once per day for 2-3 months. Monthly liver function testing during treatment is recommended. Nystatin powder may be ordered, by prescription, through pharmacies which offer custom compounding of medications. Digestive function should also be evaluated as the underlying cause of yeast overgrowth. Dietary changes may also be considered. Other Food Sensitivities Additional IgG food sensitivities may be seen. An IgG sensitivity is different from the IgE allergies most allergy doctors check for. Common food sensitivities include dairy casein, corn, soy and eggs. Treatment includes avoiding the food, and food rotation. There are some reports of a reduction of food sensitivities when digestive function improves. To begin an elimination diet, it makes sense to start with the top most common food allergens, as identified by regulatory agencies like the FDA (U.S. Food and Drug Administration) and health organizations like the CDC (Centers for Disease Control and Prevention), and eliminate them one at a time for 2-3 weeks, then add the item back and record any symptoms or issues you might have. It might make sense to start this process in this order: Milk Eggs Peanuts Tree nuts (such as almonds, cashews, walnuts) Soy Fish Shellfish (such as shrimp, crab, lobster) Sesame seeds Mustard Dr. Fasano has created a diet for those with celiac disease which seems to help most celiacs improve quickly. Lately, there's also been focus on FODMAPS (See below). A low FODMAP diet has been shown to help reduce symptoms of IBS. This older article also has some interesting ideas. Cross-Reactivities for Celiac Patients A recent study indicates that Silicon Dioxide (Food additive E551) May Trigger Intestinal Damage and Inflammation in People with Celiac Disease or Gluten Sensitivity. Cross-reactivity between anti-gliadin antibodies and certain spice proteins indicates that patients with celiac disease or wheat allergies may also have an intolerance to many spices, even if they are gluten-free. Some spices can also be a source of cross-contamination, as wheat flour may be used as an anti-caking agent. This article explores this topic in more detail: Beyond Gluten: Exploring Lesser-Known Triggers and Cross-Reactivities for Celiac Patients Digestive Function Multiple problems with digestive function may be found. A complete evaluation should be done. One source for a comprehensive stool analysis may be obtained, by mail and by prescription. Intestinal Motility Increased intestinal motility may contribute to continuing diarrhea. Try reducing motility by using a fiber supplement like Benefiber or Citracel. Particularly in individuals who have had their gall bladder removed, consider Cholestid, a prescription drug used for lowering cholesterol, which may also slow motility. It acts by binding to irritating bile salts. Decreased Stomach Acid Low stomach acid (hypochlohydria) may interfere with the effectiveness of digestive enzymes, and promote yeast or bacterial overgrowth. A good source of information is the book "Why Stomach Acid is Good for You" by Wright & Lenard. For testing, using the Heidleberg Capsule or Gastrocap tests. Some celiacs with low stomach acid find benefits from taking supplemental Betaine HCl, bitters, digestive enzymes and probiotics, available at a health food store. Related articles include: Reduced Fecal Acidity Mirrors Rise in Celiac Rates. Beneficial Bacteria Probiotics are very helpful for regaining the balance of the intestinal flora. Use products that have multiple types of bacteria. Those found in the refrigerated section of health food stores will have the highest level of bacteria. Kefir, raw kimchee and raw sauerkraut, also found in the refrigerated section, have high levels of active cultures. Related articles include: Celiac Disease Onset Changes Gut Microbiota in Children; What Can Gut Microbiomes Teach Us About Gastrointestinal Distress in Children?; and Gut Microbiota Reflects Disease Severity in COVID-19 Patients. Digestive Enzymes Pancreatic enzymes assist with more complete digestion, discouraging unhealthy bacterial growth. Many people with celiac disease prefer vegetable based enzymes. which may be purchased online, or at health food stores. Animal derived enzymes are available by prescription. Experiment to see what works best. To prevent heartburn, start by sprinkling ½ of a capsule on food, and increase as needed and tolerated. Be sure to make sure your enzymes are gluten-free. Watch out for Maltase, which can often be made from barley. Related articles include: Are Gluten-Busting Enzymes the Best Hope for Future Celiac Treatment and Maintenance?; Could Enzymes from Oral Bacteria Treat Celiac Disease?; Researchers Review Potential of Gluten Degrading Enzymes for Treatment of Celiac Disease; and Imagine a Gluten-Busting Enzyme that Worked Like LactAid. Carbohydrate Intolerance Some individuals do not digest carbohydrates and sugars well. The undigested carbohydrates encourage the growth of harmful yeasts and bacteria. More information on a diet low in carbohydrates may be found in the book "Breaking the Vicious Cycle" by Gottschall, who recommends eliminating all complex carbohydrates to kill off "bad" bacteria. Parasites and other Bacterial Problems Check for parasites and other bacterial problems, including Giardia lamblia and Ascaris lumbricoides. Just because an individual has celiac disease, doesn't mean they cant have the bugs that a normal person with diarrhea may have! Other Autoimmune Diseases A number of autoimmune conditions are associated with celiac disease. At least one in three people diagnosed with adult celiac disease will also have another autoimmune disease. Many report a significant improvement in their other autoimmune disease after beginning a gluten free diet. However, some individuals with celiac disease may develop other autoimmune diseases even after beginning a gluten free diet. Watch for Type 1 diabetes, liver, thyroid, pancreas and adrenal diseases, peripheral and central nervous system damage, connective tissue and other rheumatoid inflammations. Related articles include: Celiac Disease is Linked to Autoimmune Thyroid Disease; and The Ten Risk Factors Most Associated with Celiac Disease. FODMAPS FODMAPs is an acronym, short for “fermentable, oligosaccharides, disaccharides, monosaccharides and polyols.” FODMAPs is a single name for a bunch of different molecules, common in many in foods, that are poorly absorbed by some people. People who can’t tolerate FODMAPs can suffer celiac-like gastrointestinal symptoms. A low FODMAP diet has been shown to help reduce symptoms of IBS, and could be helpful to some people with celiac disease. FODMAPs have also been shown to play a role in non-celiac gluten sensitivity (NCGS). Now, a new app can help people zero in on FODMAPs in food. Related articles include: Can Low FODMAP Diet App Help Some Celiac and IBS Patients?; What's the Deal with FODMAPs and Gluten-sensitivity in IBS?; and FODMAPs, Food Intolerance and You. Oxalate Sensitivity Oxalate sensitivity can lead to inflammation in certain individuals due to the body's inability to properly metabolize oxalates, which are naturally occurring compounds found in many foods. When these oxalates accumulate in the body, they can form crystals that deposit in tissues, leading to inflammation and pain. This condition, often linked to disorders like kidney stones, can exacerbate inflammatory responses in the gut, joints, and other tissues, particularly in those with compromised gut health or certain genetic predispositions. The inflammatory response triggered by oxalate crystals can contribute to symptoms such as joint pain, digestive issues, and even chronic fatigue, making it crucial for sensitive individuals to manage their oxalate intake. Lectin Sensitivity Lectin sensitivity can cause inflammation in some individuals due to the body's adverse reaction to lectins, which are proteins found in various plant foods such as beans, legumes, and grains. Lectins can bind to carbohydrate molecules on the surfaces of cells, including those in the gut lining, potentially disrupting the gut barrier and leading to increased intestinal permeability, also known as "leaky gut." This disruption can trigger an immune response, resulting in inflammation and contributing to symptoms such as digestive issues, joint pain, and fatigue. In sensitive individuals, reducing or avoiding high-lectin foods may help alleviate these inflammatory responses and improve overall health Article originally published 03/25/2007, updated 04/07/2021.

Celiac.com 10/08/2010 - Finally a reliable, simple, affordable and very rapid test for the detection of celiac disease—and it can be done within the comfort of your own home! The new Biocard Celiac Test from 2GPharma Inc. can be used as an aid in the diagnosis of celiac disease, although confirmation can only be done by a medical doctor. The Biocard Celiac Test is a home test for the detection of celiac disease-associated IgA antibodies to transglutaminase from a fingertip blood sample that can be obtained hygienically via a small, sterile lancet that is contained within the Biocard Celiac Test kit. Test results can be read within 10 minutes. The sampling is practically painless and all materials required for the test are included along with fool proof step by step instructions on how to perform the test (although it is important to read the instructions fully before you use the kit). The results are easy to read and have a 93% accuracy. I decided to use the Biocard Celiac Test on my husband and the entire procedure took less than 2 minutes and the results were received within 10 minutes. Luckily, he did not carry the antibodies for celiac disease at this time.

Celiac disease support groups in the United States - Includes national organization affiliation (if any). Alabama Birmingham - Support Group Birmingham Celiac Disease Support Group (Alabama) Contact: Rebecca Kinney Email: birminghamceliac@hotmail.com Los Angeles - Support Group: Awesome Friends with Food Sensitivities Contact: Harmony Hopkins Email: awesomefriendsmeetup@gmail.com Arizona Fountain Hills - Support Group Contact 1: Allyn Krieger-Fiedler NMD E-mail: drakfiedler@cox.net Contact 2: Margy Squires E-mail: msquires@e-tyh.com Green Valley - Support Group Contact: Kay Bleuer E-mail: nkbleuer@yahoo.com Payson - Support Group Contact 1: Nancy A. Palmer Payson Area Celiac Support Group HC 2 Box 95-S Payson, AZ 85541 Tel: (520) 478-4383 Contact 2: Jane Kendall HCR Box 305-B Payson, AZ 85541 Tel: (520) 474-6707 Arkansas Hot Springs Village - Resource: Contact: Betty Shepherd 11 Indiana Circle Hot Springs Village, AR 71909 Tel: (501) 922-6034 Little Rock - Support Group Contact: Anne Luther Gluten Free in Central Arkansas 4710 Sam Peck Road, 1015 Little Rock, AR 72223 Tel: (501) 223-3981 E-mail: aaluther@comcast.net Mountain Home - Support Group Contact: Marilyn H. Jorgensen Arkansas/Ozark Celiac Support Group (CSA) 198 Cochran Drive Mountain Home, AR 72653 Tel: (501) 492-5243 Rogers - Support Group Contact: Janice Carmichael Northwest Arkansas Celiac-Sprue Group (Fayetteville, AR) 2703 Kathy Lane, Rogers, AR 72653-8725 Tel: (501) 636-8995 California Carlsbad - Resource: Contact: Helen Foreman 7112 Lantana Terrace Carlsbad, CA 92011 Tel: (760) 931-7809 E-mail: bhforeman@webtv.net Lake Arrowhead - Support Group Contact: Jeanne Dickson PO Box 2052 Lake Arrowhead, CA 92352 Tel: (208) 699-5913 E-mail: gfjeanne@msn.com Marin - Support Group Gluten Intolerance Resource Group of Marin Contact: Alison St. Sure Tel: (415) 785-4980 Merced - Resource: Contact: Gary L. Brackney Sr. 3596 Hagen Court Merced, CA 95348 Tel: (209) 722-7760 Modesto/Stockton/Turlock - Support Group Central Valley Celiacs Contact: Karen Cadiz Tel: (209) 823-3211 E-mail: centralvalleyceliacs@comcast.net Oakland - Support Group Contact 1: Melissa Batavia Sprue Group of the SF Bay Area Tel: (510) 655-2555 E-mail: melbatavia@comcast.net Orange County - Support Group Contact: Cecile Weed Orange County Celiacs Tel: (714) 750-9543 Palm Springs - Resource: Contact: Taylor Cushmore 2283 S. Alhambra Drive Palm Springs, CA 92264 Tel: (760) 416-2051 E-mail: TaylorCush@aol.com Redding - Support Group: The Redding Gluten Free Support Group Contact: Misty Price Redding, CA 96003 Tel: (530) 223-2167 E-mail: mistyprice@charter.net San Luis Obispo County - Support Group Central Coast Celiacs Contact: Isabella Porter Tel: (805) 314 0394 Email: thecentralcoastceliacs@gmail.com San Bernardino - Support Group Contact 1:Patricia Berger Redlands Area Celiac Sprue Support Group 627 Fountain Ave. Redlands, CA 92373 Tel: (909) 793-3712 San Diego Support Group Contact : William & Helen Foreman 7112 Lantana Terrace Carlsbad, CA 92009 Tel: (760) 931-7809 E-mail: bhforeman@webtv.net San Gabriel Valley - Support Group CDF East San Gabriel Valley Contact: Lynne Turner Tel: (626) 915-2196, E-mail: travelynne812@yahoo.com Santa Ana - Support Group Santa Ana Celiacs Contact: Cecile Weed 13471 Marty Lane Garden Grove, CA 92843 Tel: (714) 750-9543 Contact 2: Debbie Lee Tel: (714) 830-8237 Santa Cruz - Support Group Santa Cruz Celiac Support Group Contact: Pam Newbury 543 Ice Cream Grade Santa Cruz, CA 95060 Tel: (831) 423-6904 E-mail: pam@santacruzceliac.org Internet: http://santacruzceliac.org Santa Rosa - Support Group Contact 1: Laura Southworth Sonoma County CSA 480 Bohemian Highway Freestone, CA 95472 Tel: (714) 798-3112 Contact 2: Rosemary Yates 129 Grenvillia Drive Petaluma, CA 94952 Tel: (707) 766-8606. Stockton - Support Group Contact 1: Karen Cadiz Central Valley Celiacs (CSA) E-mail: centralvalleyceliacs@comcast.net Tel: (209) 823-3211 Temecula - Support Group: Contact: Ramona Inman Celiac Disease Foundation - Temecula Tel: (951) 676-0651 E-mail: ramonacdf@aol.com Ventura County - Support Group Contact: Kathy Button 2525 Waxwing Ave. Ventura, CA 93003 Tel: (805) 650-0520 E-mail: venturaceliac@sbcglobal.net Walnut Creek / Contra Costa County Support Group Walter Moeller, Founder and President Walter Moeller Tel: 925-932-8875 Email: GlutenfreeWC@Gmail.Com Colorado Berthoud - Resource: Contact: William R. Eyl 2600 Blue Mountain Avenue Berthoud, CO 80513 Tel: (303) 772-3155 Colorado Springs - Support Group Contact: Virginia Ludwig Pikes Peak (CSA) 3705 Meadowland Blvd. Colorado Springs, CO 80918 Tel: (719) 598-6748 Colorado Springs - Support Group Contact: Victoria Garcia Celiac Youth Support Group 3408 Colony Hills Road Colorado Springs, CO 80916 E-mail: jv4garcia@msn.com Denver - Support Group Contact: Betty Elofson Denver Celiac Sprue Association (CSA) Tel: (303) 238-5145 Denver - Support Group Contact 1: Donna Steelman Denver Celiacs Denver Metro Area 4617 S Joplin Way Auroa, CO 80015 Tel: (303) 699-6170 E-mail: donnasteelman@comcast.net Contact 2: Jill Smith 2289 W. Hyacinth Road Highlands Ranch, CO 80216 Tel: (303) 683-3281 Fort Collins - Support Group Contact 1: Deborah Fusco Northern Colorado Chapter (CSA) 4610 Shoreline Road Fort Collins, CO 80526 Tel: (970) 226-4105 E-mail: dfusco@hach.com Contact 2: Delores Valdez-Amick 803 S. Van Buren Ave. Loveland, CO 80538 Tel: (970) 663-4048 Highlands Ranch - Resource: Contact: Mary Ann Peterson 10111 S. Silver Maple Rd. Highlands Ranch, CO 80126 Tel: (303) 683-1461 Connecticut Danbury/Waterbury - Support Group Contact 1: Suzel Cable Nutmeg Chapter (CSA) 548 High St., 2nd Floor Naugatuk, CT 06770 Tel: (203) 723-1318 Contact 2: Edith K. Meffley Tel: (203) 438-6108. New Haven - Support Group Contact: Bill Jacobs Greater New Haven Celiac Group 100 Alexander Drive Cheshire, CT 06410 E-mail: wajacobs15@aol.com Northwest Connecticut - Support Group Contact: Marilyn Duffany Celiac Support Group of Northwest Connecticut (CSA) Tel: (203) 283-8506 Waterbury/Nutmeg - Support Group Contact 1: Carol Hoebel Celiac Sprue Support Group of NW Connecticut 84 Woodruff Ave. Thomaston, CT 06787 Tel: (860) 283-5577 E-mail: david.hobel@snet.net Contact 2: Suzel Cable 548 High St., 2nd Floor Naugatuk, CT 06770 Tel: (203) 723-1318 Contact 3: Edith K. Meffley Tel: (203) 438-6108 Contact 4: Joan Balough Tel: (203) 268-3829 Contact 5: Syd Aronowitz Tel: (203) 794-0150 . Delaware Wilmington/Newark - Support Group Delaware Celiac and Gluten Free Group Contact: Eva Szalewicz Tel: (302) 482-4882 E-mail: glutenfreedelaware@gmail.com Internet: http://glutenfreedelaware.tripod.com Florida Crystal River - Support Group Contact: Mary Lou Thomas Crystal River Celiacs 6350 W. Patriot St Homosassa, Florida 34448 Tel: (352) 628-9559 E-mail: mlthomas4cs@hotmail.com Daytona Beach - Support Group Contact: Juanita Ohanian Daytona Beach Celiac Support Group 2720 Autumn Leaves Drive Port Orange, FL 32128 Tel: (386) 492-3159 Email:juanitaohanian@gmail.com Fort Myers - Support Group Contact: Terry Foster Lee County Celiac Group Tel: (237) 935-5093 E-mail: terry@theskinnypantry.com Largo - Support Group Contact: Carol Anne Gluten Intolerance Support Group of Largo Cypress Palms, Largo 400 Lake Avenue N E Largo, Florida 33771 Tel: (727) 204-3538 E-mail: WyndStarrCO1@Yahoo.com Melbourne - Support Group Contact 1: Mary Kump GIG of Florida 3190 Village Park Melbourne, FL 32934-8296 Tel: (407) 254-2034 Contact 2: Michael Jones E-mail: mjones@digital.net Naples and Southwest Florida - Support Group Celiac Disease Support Group of Southwest Florida (NCA chapter) Contact: Aisling (ash-ling) Swift Tel: (239) 293-6092 E-mail: SWFLCeliac@gmail.com Internet: https://www.facebook.com/CeliacDiseaseSWFL/ Orlando - Support Group Contact: Michael Jones Celiacs of Orlando 12733 Newfield Drive Orlando, FL 32837 Tel: (407) 856-3754 E-mail: mjones@digital.net. Palm Beach - Support Group Contact: Phyllis Kessler Palm Beach County Celiac Support Group 15927 Laurel Creek Drive Delray Beach, FL 33446 Tel: 561-637-0396 Pensacola - Resource: Contact: Nancy Kilpatrick 5433 Lee St. West Milton, FL 32570 Tel: (904) 626-0064 Sarasota - Support Group Contact: Edith Kaplan Sarasota Celiacs E-mail: ediesrq@verizon.net South Florida Celiac Support Group CDF So. Florida Chapter Tel: 561-637-0396 Email: Pkessler23@AOL.COM Georgia Smyrna - Support Group Contact: Jan Austin Atlantic Celiac Support Group (CSA) Tel: (404) 433-9661 Warner Robins - Support Group Contact: Carol Hinton, Branch Manager Tel: (478) 397 5061 E-mail: middlegeorgiagig@yahoo.com Idaho Boise - Support Group Contact: Twylia McIlvanie Boise Idaho Celiac Support Group Tel: (208) 939-0373 E-mail: Scott Neil - SNeil@Cableone.net Illinois Aurora - Support Group Contact: Sandy Wright Aurora celiac disease/GI CSA Support Group Aurora, IL Email: sandywright@att.net Champaign - Support Group Champaign-Urbana Celiac Support Group E-mail: tlflipper76@aol.com Decatur - Resource: Resource: Jewell M. Barr 3333 Lost Bridge Rd. Decatur, IL 62521 Tel: (217) 423-8234 Peoria - Support Group Contact 1: Marsha Bishoff Central Illinois Celiacs (CSA) 619 Spring Street Washington, IL 61571 Tel: (309) 444-7415 or (309) 692-3848 Petersburg - Support Group Contact: Barb Hand Land of Lincoln Celiac Support Group R.R. 3, Box 276C Petersburg, IL 62675 Tel: (217) 632-2684 Rockford - Support Group Contact 1: Jolyn M. Fasula Rockford Area Chapter (CSA) 6816 Crown Ridge Rockford, IL 61103 Tel: (815) 877-5302 Contact 2: Ron Ford Tel: (815) 229-8804 Indiana Bloomington - Resource: Contact: Denise Brown Tel: (812) 824-9674 Evansville - Support Group Contact: Barbara Watson Evansville Celiac Sprue Support Group 1317 Bayard Park Dr. Evansville, IN 47714 Evansville - Resource: Contact: Gloria Baker 2711 Knob Hill Dr. Evansville, IN 47711 Tel: (812) 476-5744 Indianapolis - Support Group Contact: Joyce Etheridge Celiac Support Group of Indianapolis, (CSA) 1168 Sheffield Drive Avon, IN 46123 Tel: 317-272-4609 E-mail: mjbetheridge@aol.com Indianapolis - Support Group Contact: Diane Hosek 1371 Stoney Creek Circle Carmel, IN 46032 Tel: (317) 569-9670 Email: dianehosek@gmail.com Lafayette - Support Group Contact: Nancy H. Linnemann Indiana Gluten Intolerance Support Team (CSA) 2635 N 400 W., West Lafayette, IN 47906 Tel: (765) 497-0665 E-mail: n.linnemann@comcast.net La Porte - Resource: Contact: Margaret M. Diffendorfer 1012 Wright Avenue LaPorte, IN 46350 Tel: (219) 362-6607 Iowa Carroll - Resource: Contact: Lynne Humphrey 121 S. Maple St. Carroll, IA 51401-3123 Tel: (712) 792-5866 E-mail: hump@win-4-u.net Cedar Rapids - Support Group Cedar Rapids support group Contact: Theresa Brandon 2407 Linwood St. S.W. Cedar Rapids, Iowa 52404-3554 Tel: (319) 362.8087 E-mail: tatbrandon@gmail.com Iowa City - Support Group Contact: Sarah Berke Iowa City Celiacs 735 Michael St. #32 Iowa City, IA 52246 Tel: (319) 337-9521 Tipton - Support Group Contact: Jacey Drollinger Living Free Celiac Disease Support Group Tipton, Iowa 52772 Tel: (319) 886-6255 Waverly - Support GroupWaverly Area Celiac Group Contact 1: Jill Everding Denver, IA 50622 Tel: (319) 984-5928 E-mail: jill.everding@wartburg.edu Contact 2: Betty Bast Waverly, IA 50677 Tel: (319) 231-0107 E-mail: bastbetty13@gmail.com Kansas Leavenworth - Resource: Contact: Latisha May Thomas 1313 Vilas Leavenworth, KS 66048 Tel: (913) 682-6678 Manhattan - Support Group Contact: Rene' Eichem Manhattan Celiac Support Group 2442 Buttonwood Drive Manhattan, KS 66502 Tel: (913) 776-6013 Contact 2: Mary Jordan 2513 Nutmeg Manhattan, KS 66502 Tel: (913) 539-2963 E-mail: MJordan672@aol.com Topeka - Support Group Contact: Sharon Larson, President Topeka Celiac Sprue Support Group (CSA) 4310 SE McMahan Ct. Tecumseh, KS 66542 Tel: (785) 379-0479 E-mail: slars5@cox.net Wichita - Support Group Contact 1: Kay Finn Wichita Celiacs (CSA) 805 N. Cypress Wichita, KS 67206 Tel: (316) 686-7034 Kentucky Benton - Support Group Contact: Rose Mary Mueller Heartland CS.DH of W. Ky./S.Il. 102 Wyndy Brook Lane Benton, KY 42025 Tel: (270) 527-8330 E-mail: heartlandceliac@bellsouth.net Louisville - Support Group Contact 1: Emily McKinney Greater Louisville (Kentucky) CSA Chapter E-mail: ecmckinney@gmail.com Louisiana Baton Rouge - Support Group Contact 1: Mary Mack-Jeansonne, President Celiacs of Baton Rouge 3387 Madeira Drive Baton Rouge, LA 70810 Tel: (225) 766-8872 E-mail: celiacsbr@aol.com Baton Rouge - Support Group Baton Rouge Area Celiacs Contact: Glenda Worm Tel: (225) 571-7980 E-mail: pelinc1@bellsouth.net New Orleans - Support Group Contact 1: Diane Schaefer Greater New Orleans Celiac Sprue Support Group Tel: (504) 348-3099 Contact 2: Lorraine McCaslin Tel: (504) 833-1717 New Orleans - Support Group Contact: Annette Bentley, BA, MSc President, American Celiac Society P.O. Box 23455 New Orleans, LA 70183-0455 Tel: (504) 737-3293 Internet: www.americanceliacsociety.org Slidell - Resource: Contact: Jamie Head 3771 Arrowhead Dr. Slidell, LA 70458 Tel: (504) 643-2676 Maine Bangor - Support Group Contact 1: Ann Delaware Celiac Sprue Support Group of the Greater Bangor Area P.O. Box 472, Bradley ME 04411-0472 Tel: (207) 827-2733 Contact 2: Greg Chappelle 27 Hilliard St. Old Town, ME 04468 Bangor - Resource: 25 Cushing Drive Glenburn, ME 04401-1431 Tel: (207)-947-9958. Maryland Annapolis - Support Group Chesapeake Celiac Support Group Contact: Patricia Minnigh Tel: (410) 672-5834 Baltimore - Support Group Maryland Chapter 11 CSA/USA Contact 1: Phyllis Farmer 600 Straffan Drive, Unit 502 Timonium, MD 21093, Tel: (410) 560-1279 Contact 2: Doug Rettberg 498 South Hills Court Westminster, MD 21158 Tel: (410) 876-3604 Bethesda - Support Group Contact: Jerry Malitz Montgomery County Support Group Washington Area Celiac Support Group Email: dcmetroceliacs@gmail.com Delmarva - Support Group Contact: Betty Bellarin Maryland Delmarva Celiac Support Group E-mail: bbrboc@comcast.net Massachusetts Greater Boston and New England - Support Group Celiac Kids Connection Children's Hospital- GI/Nutrition Dept. 300 Longwood Ave. Boston, MA 02115 Tel: (617) 355-2127 https://www.celiackidsconnection.org/ E-mail: CeliacKidsConnection@childrens.harvard.edu Boston - Support Group The Healthy Villi (Greater Boston Celiac/DH Support Group, Chapter #67 of CSA/USA) Chairperson: Lee Graham E-mail: randlgraham@comcast.net Membership Chairperson: Catherine Mirick Tel: 888-4- CELIAC Cape Cod - Support Group Contact 1: Diane Bertrand Cape Cod Support Group PO Box 1114 North Falmouth, MA 02556 E-mail: Dibertrand@comcast.net Contact 2: Margo Finnell RD, MPH, LDN E-mail: Margo820@juno.com Fall River - Support Group Contact: Kathy Thiboutot Southeast New England (including Cape Cod ) Celiac Support Group Tel: (401) 624-8888. Lowell - Resource: Contact: Katherine C. Merrill 45 Tolman Ave. Lowell, MA 01854 Tel: (978) 454-2822 Michigan Battle Creek - Support Group Gluten Free Club Battle Creek, MI Contact: Nancy Makuch Tel (269) 979-7698. Coldwater - Resource: Contact: Bruce & Ruth Young 335 Barnhart Road Coldwater, MI 49036 Tel: (517) 278-8248 Escanaba - Resource: Contact: David A. Jondrow 312 Minneapolis Ave. Gladstone, MI 49837 Tel: (906) 428-1621 Gladstone - Resource: Contact 1: David A. Jondrow 312 Minneapolis Avenue Gladstone, MI 49837 Tel: (906) 428-1621 Grand Rapids - Children's Support Group Contact: Nancy Spears E-mail: celiackids@glutenfreegr.com Kalamazoo - Support Group CSA of Greater Kalamazoo Contact: Annette Hensley Tel: (269) 492-5278 Michelle Rutan Tel: (269) 342-1533 Internet: www.glutenfreekzoo.org Lansing - Support Group Greta DeWolf 1815 Sandhill Rd. Mason, MI 48854 Tel: (517) 349-0294 Internet: http://micapitalceliacs.atspace.com Support Group Contact: Donovan J. Sprick Mid-Michigan Chapter (CSA) Tel: (313) 733-6857 Dryden - Support Group Tri-County Celiac Support Group, SE Michigan Internet: https://www.tccsg.net/ Minnesota Brainerd Lakes Area Celiac Support Group Contact: Jennifer Chock Brainerd, MN Tel: (218) 825-9525 Minneapolis/St. Paul Area Support Group Contact: Karen Geronime Northland Celiac Support Group (formerly Midwest Gluten Intolerance Group) E-mail: klgeronime@aol.com Greater Minneapolis Area - Support Group Mpls./St. Paul and greater Minnesota Area Support Contact: Lynn Gabriel Tel: (952) 443-2626 E-mail: lynnshadlegabriel@yahoo.com Contact 2. Carol Crandall E-mail: cgrzlybr@aol.com Rochester Support Group Contact: Coyla Shepard, Founder Southeast Minnesota Celiac Support Group 2805 Hidden Hills Lane NE Rochester, MN 55906 Contact 2: Warren Budd Tel: (507) 288-9056 Mississippi Gulfport - Support Group Contact: Jane Dacey Mississippi Celiac Support Group P.O. Box 1276 Ocean Springs, MS 39566 Tel: (601) 875-2820 Missouri Branson - Support Group GIG of Branson Tri-Lakes Barbara Hicks 9 Arrowhead Road Kimberling City, MO 65686 Tel: (417) 739-2703 E-mail: honedu@centurytel.net Kansas City - Resource: Contact: Elanor R. Aadams 135 N. Missouri Liberty, MO 64068 Tel: (816) 781-6514 Nevada (and Southeast Kansas) - Support Group Gluten Intolerance Group of North America Contact: Sharon Jepson Tel: 979-848-7455 St. Louis - Support Group Contact 1: Bill Vellios Sr. St. Louis Chapter (CSA) 812 Kehrs Mill Road Ballwin, MO 63011-2442 Tel: (314) 391-6855 Contact 2: Joan Fitzsimmon 6716 Westway Road St. Louis, MO 63109 Tel: (314) 351-5114 Contact 3: Linda Ritter E-mail: nltr@charter.net Montana Alzada - Resource: Contact: Teri Lindberg HC 56, P.O. Box 60 Alzada, MT 59311 Big Timber - Resouce: Contact: Debra Barrett P.O. Box 1018 513 W. Third Big Timber, MT 59011 Billings - Resouce: Contact: Dennis McGough 1023 Marie Dr. Billings, MT 59101 Tel: (406) 256-5569 Choteau - Resource: Contact: Jeanette Rasmussen 4210 Highway 89 Choteau, MT 59422 Tel: (406) 466-2091 Columbus - Resource: Contact: Jeanne Murray P.O. Box 594 Absarokee, MT 59001-0594 Tel: (406) 328-4851 Deer Lodge - Resource: Contact: Eloise Faber 911 Missouri Avenue Deer Lodge, MT 59722 Tel: (406) 846-1246 Havre - Resouce: Contact: Ruth Wardell Havre, MT 59522 Tel: (406) 265-1701 Helena - Resource: Contact: Judy Harris 1817 Silver St. Helena, MT 59601 Tel: (406) 443-5158 Missoula - Resource: Contact: Dottie Caluori 1440 River St. Missoula, MT 59801 Tel: (406) 542-7499 Wolf Point - Resource: Contact: Alice Whitmer 872 Nickwall Road Wolf Point, MT 59201 Tel: (406) 525-3289 Celiac disease support groups in the United States - Includes national organization affiliation (if any). Nebraska Grand Island - Support Group Contact: Keith McTavish Central Nebraska Celiacs P.O. Box 411 Wood River, NE 68883 Tel: (308) 583-2949. Grand Island - Resource: Contact: Diane D. Epp Box 595 Henderson, NE 68371 Tel: (402) 723-4759 Omaha - Support Group Contact 1: Lynn Samuel Midlands Chapter (CSA) 6303 Kentucky Road Papillion, NE 68133 Tel: (402) 339-1346 Contact 2: Rebecca Warren Tel: (402) 235-3576 Seward - Resource: Contact: Mary Schluckebier 1616 Plainview Avenue Seward, NE 68434 Tel: (402) 643-4340 Nevada Las Vegas - Support Group Contact: Jennifer Sullivan Tel: (702) 985-7664 Las Vegas - Resource: Contact: Joanne B. Mathews 270 W. Basic Road Henderson, NV 89015 Las Vegas - Resource: Contact: Catherine Hammelrath 3355 Rolan Court Las Vegas, NV 89121 Tel: (702) 733-7633 E-mail: vegascat53@cox.net Reno Support Group Contact: Kerry Seymour, MS, RD, CDE Reno Celiacs & Nutrition Resources 475 Hill Street, Suite C Reno, Nevada 89501 Tel: (775) 329-8811 New Hampshire Laconia - Resource: Contact: Ann Marie Shumway 2541 Old Parade Rd. Laconia, NH 03246 Tel: (603) 528-1911 Nashua area - Support Group Contact 1: John Waksmonski Tel: (603) 437-1702 Contact 2: Christine Muir E-mail: themuirs@charter.net New Jersey Brick - Resource: Contact: Gary Powers 284 White Oak Court Brick, NJ 08724 Tel: (732) 840-3718 Cherry Hill - Resource: Contact: Fran Twersky 107 East Burgess Road Marlton, NJ 08053-1202 Tel: (609) 983-3362 Hackettstown - Resource: Contact: Mrs. Merle Morse P.O. Box 148 Hackettstown, NJ 07840 Tel: (908) 852-7311 Long Branch - Support Group Specialized Pediatric Celiac Group Specialized Ped. Ambulatory Center 307 3rd Avenue Long Branch, NJ 07740 Tel: (201) 870-5216 New Brunswick - Support Group Contact 1: Diane Eve Paley Celiac/DH Support Group and Cel-Kids Network CSA/USA Inc. #58 22 Island Drive Old Bridge, NJ 08857-2518 Tel: (908) 679-6566 E-mail: DEPaley@AOL.COM Contact 2: Alex Schwedack 5-c Twin Rivers Dr. East Windsor, NJ 08520 Tel: (609) 443-6623 Old Bridge - Support Group Contact: Diane Eve Paley Central Jersey Celiac/DH Support Group, CSA/USA 22 Island Dr. Old Bridge, NJ 08857 Tel: (732) 679-6566 E-mail: DEPaley@aol.com. Paramus - Support Group Contact: Lauri Schlussel American Celiac Society Bergen County 11 Marz Road Westwood, NJ 07675-8217 Tel: (201) 573-0397 South Jersey - Support Group CSA Southern New Jersey Chapter #9 Contact 1: Leah Edelstein, Co-chairperson 23 Stevens Drive Voorhees, NJ 08043 Tel: (856) 435-6785 E-mail: ledelstein@comcast.net New Mexico Albuquerque - Support Group Contact: Marilyn Johnson Albuquerque Gluten Intolerance Support Group Celiac Sprue Association New Mexico State Coordinator Tel: (505) 299-5283 E-mail: marilynyj@comcast.net Las Cruces - Support Group Las Cruces Celiacs Contact: Susan Pieper 4825 Senita Las Cruces, NM 88011 Tel: (505) 522-8182 E-mail: spieper@huntel.com New York Albany - Support Group Contact: Barbara Jordan Capital District Celiac Support Group (Albany - ACS) Tel: (518) 439-8652 Batavia - Resource: Contact: Virginia R. Baldwin P.O. Box 158 Pavilion, NY 14525 Tel: (716) 584-3422 Binghamton - Support Group Contact: Nancy Dorfman Celiac Self Help Group 12 Laurel Avenue Binghamton, NY 13905 Tel: (607) 722-3848 Buffalo - Support Group Contact 1: Mike Lodico Gluten Free In WNY (GIG) P.O. Box 24 N.Tonawanda, NY 14120 Tel: (716) 694-3287 E-mail: glutenfree2@gmail.com Contact 2: Joanne Hameister Tel: (716) 655-0849 E-mail: jeham@buffnet.net Hudson Valley Area - Support Group Contact: Cathy Selber Mid-Hudson Valley Gluten-Free Outings Meetup Group E-mail: clselber@optonline.net Ithaca/Cornell - Support Group Contact: Laura Johnson-Kelly 48 Comfort Rd. Ithaca, NY 14850 Tel: (607) 272-5902 E-mail: LWJ1@cornell.edu. Ithaca - Resource: Contacts: Mary Ochs 18 Whig St. Trumansburg, NY 14886 Tel: (607) 387-9221 E-mail: mao4@cornell.edu. Long Island - Support Group Contact 1: JoanAnn Defiglia Long Island Celiacs 1023 Jackson Avenue Franklin Square, NY 11010 Tel: (516) 437-0396 Contact 2: Ellen Mulligan 193-5th St. Hicksville, NY 11801 Contact 3: James J. Callahan Tel: (516) 794-1654. Middletown - Support Group Contact: Marisa Frederick Celiac Kids' Club 264 Scotchtown Road Goshen, NY 10924 Tel: (914) 294-1385 New York - Support Group Contact 1: Mary Ferry Greater New York Celiac Support Group (CSA) Tel: (212) 304-1026 Rochester - Support Group Rochester Celiac Support Group Contact 1: Susan Kath 1039 Moseley Road Fairport, NY 14450 Tel: (585) 425-9994 Contact 2: Marvin Becker 210 Crandon Way Rochester, NY 14618 Tel: (585) 442-9528 Internet: http://www.rochesterceliacs.org Suffolk County - Support Group Suffolk County (NY) Celiacs-a Branch of GIG Contact 1: Les Doti P.O. Box 13 Kings Park, NY 11754-0013 Contact 2: Michael Thorn Tel: (631) 395-5071 E-mail: SuffolkCeliacs@aol.com Williamsville - Support Group Contact: Cliff Hauck, Co-Chairperson P.O. Box 1835 Williamsville, NY 14231 Western NY Gluten Free Diet Support Group (CSA/USA Chapter #33-1990) Tel: (716) 636-6021 E-mail: hauckc@adelphia.net Internet: http://www.buffaloglutenfree.org North Carolina Asheville - - Resource: Contact: Leah R. Karpen 518 Ox Creek Road Weaverville, NC 28787 Tel: (704) 645-9067 Boone - Resource: Contact: Ernest Lane 827 Blairmont Dr. Boone, NC 28607 Tel: (704) 264-4618 or (704) 262-2380 E-mail: epl@math.appstate.edu Durham - Fayetteville Support Group Contact 1: Ruth Thomas North Carolina Celiacs (CSA) Tel: (919) 542-4030 Contact 2: Susan Black Tel: (910) 875-3186 North Dakota Bismarck - Support Group Contact: Lila Brendel Central ND Celiac Resource Group 1900 93 St. SE Bismarck, ND 58504 Tel: (701) 258-7800 E-mail: CNDC_GIG@msn.com Fargo - Support Group Contact: Stacey Juhnke or Sara Vollmer GIG of Fargo-Moorhead PO Box 464 Fargo ND 58107 Tel: (701) 237-4854, (701) 412-8110, (701) 238-0587 Email: GIG_FM@hotmail.com Oakes - Support Group Contact: Juli Becker North Dakota Celiacs (CSA) 10585 85th St. SE Oakes, ND 58474 Tel: (701) 742-2738 Ohio Bellevue - Support Group Contact: Dennis & Cheryl Dendinger North Coast Celiac Support Team Bellevue, OH 44811 Tel: (419) 483-6529 Cleveland- Support Group Northeast Ohio Celiac Support Group E-mail: info@neohioceliac.com Contact: Trisha Lyons, RD, LD 2500 MetroHealth Dr. Cleveland, OH 44109 E-mail: TLyons@metrohealth.org Tel: (216)-778-7835 Internet: www.neohioceliac.com Cleveland - Support Group Contact: Cindy Koller-Kass, President Greater Cleveland Celiac Association CSA/USA Chapter 50 33040 Rockford Drive Solon, OH 44139 Tel: (440) 248-6671 E-mail: glutenfree1@yahoo.com Cleveland - Support Group Generation gluten-free Cleveland Contacts: Suzy Evans, Lisa Eggleston, Deana Romanov Brach of Gluten Intolerance Group Support for children in North East Cleveland E-mail: GenerationGF.Cleveland@gluten.org Gluten Free Support Group of NW Ohio Contact: Holly McCollam Email: glutenfreesupportgroupofnwohio@aol.com Internet: https://www.facebook.com/groups/glutenfreesupportgroupofnwohio Columbus - Support Group Contact: Mary Kay Sharrett Gluten Free Gang 700 Children Drive Columbus, OH 43205-2696 Tel: (614) 722-3093 E-mail: sharretm@chi.osu.edu Contact 2: Monica Hrabowy 663 Laurel Ridge Drive Gahanna, OH 43230 Tel: (614) 337-1833 Tel: EHrabowy@aol.com. Internet: http://www.glutenfreegang.org Logan County Support Group Contact: Amy Keller Tel: (937) 651-6428 E-mail: amy.keller@maryrutan.org Mansfield - Support Group Contact: Bev Messner Richland County Celiac Support Group First Presbyterian Church 399 S. Trimble Rd. Mansfield, OH E-mail: bevmessner@aol.com Tel: (419) 589-5972 Toledo - Support Group Contact: Holly McCollam Gluten Free Support Group of NW Ohio E-mail: glutenfreesupportgroupofnwohio@aol.com Internet: https://www.facebook.com/groups/glutenfreesupportgroupofnwohio/ Oklahoma Norman - Resource Contact: Kate Martin Norman, OK Tel: (405)364-5612 email: one4life@swbell.net Internet: http://katesceliac.blogspot.com Oklahoma City - Support Group Contact: Heather Cline Oklahoma Celiac Sprue Support Group (CSA) 1403 Classen Drive, Oklahoma City, OK 73106 Tel: (405) 235-1715 E-mail: HMCline@aol.com Okmulgee - Resource: Contact: Barbara Sipple Rt. 1, Box 247 Morris, OK 74445 Tel: (918) 733-4571 Tulsa - Support Group: Contact: Jennifer Croley Celiac Sprue Association Tulsa Chapter #119 E-mail: csatulsa@gmail.com Oregon Burns - Resource: Contact: Nici Bailey 449 S. Diamond Burns, OR 97720 Tel: (541) 573-1164 Grants Pass - Support Group Contact: Janine Chambers 1035 NE 6th St. Grants Pass, OR 97526 Tel: (541) 218-0229 Portland/Vancouver - Support Group Portland Metro GIG Branch Contacts Contact: Mary Wikle - Branch Manager PO Box 4204 Tualatin, OR 97062-4204 Tel: (503) 692-0724 E-mail: mwikle_carousel@yahoo.com Salem - Support Group Contact #1 - Ann Grafe 1328 Dogwood Drive Woodburn OR 97071 Tel: (503) 982-3644 Pennsylvania Danville - Support Group Contact: Elaine M. Jeffreys ACS Danville City Support Group R.d.#6 Box 143 C Danville, PA 17821 Tel: (717) 275-0654 Gluten Free Group of Gettysburg Betsy Wargo, RD 717-339-2764 e-mail: bwargo@wellspan.org Indiana - Support Group Indiana Regional Medical Center Celiac Support Group Contact: Brenda Shilling, Director of NFS Indiana Regional Medical Center Indiana, PA 15701 E-mail: bshilling@indianarmc.org Mount Pleasant - Support Group Mount Pleasant Celiac Support Group Contact: Vicky Vrabel 616 West Main Street Mount Pleasant, Pennsylvania 15666 Tel: (724) 542-9745 Philadelphia - Support Group Contact: Laura Sposito ACS Whoo Sprue Group 1211 Tree Street Philadelphia, PA 19148 Tel: (215) 336-5004 Philadelphia - Support Group Contact: Karen Dalrymple Greater Philadelphia Area Celiac Sprue Support Group 583 Valley View Rd. Langhorne, PA 19047 Pittsburgh - Support Group Contact: Elsie Janthey Pittsburgh East Area Celiac Sprue Support 204 George Lane Pittsburgh, PA 15235 Tel: (412) 823-2010 Contact 2: Lois Kosoglow Tel: (412) 744-2356 Contact 3: Ruth Masengill Tel: (412) 327-5564 Pittsburgh - Support Group Contact: Lorraine Weaver, Treasurer and Membership Greater Pittsburgh Celiac Sprue Support Group, Chapter #48 CSA/USA 1446 Greenbriar Court Library, PA 15129 Tel: (412) 835-4983 or (412) 833-9507 Wilkes-Barre/Scranton - Support Group Contact: Rosemarie Butera CSA/USA Wilkes-Barre/Scranton Celiac Support Group Tel: (570) 655-0728 Wynnewood - Resource: Contact: Rita M. Herskovitz 52 Rockglen Road Wynnewood, PA 19096 Tel: (215) 642-9351 Rhode Island Providence - Support Group Contact: Tanis Collard MA & RI Celiac Support Group for Children 11 Level Acres Road Attleboro, MA 02703-6843 Tel: (508) 399-6229 South Carolina Columbia - Support Group Contact 1: Peggy Smith Palmetto Celiac Support Group 1508 Anthony Drive West Columbia, SC 29172 Tel: (803) 775-9466 or (803) 755-7291 Florence - Resource: Contact: Lea E. Marshall 1214 Hillside Avenue Florence, SC 29505 Tel: (803) 665-6290 Tennessee Jackson - Support Group Contact: Allan Clement 151 Lone Oak Dr. Jackson, TN 38305 Tel: (731) 423-5315 E-mail: aclementhome@hotmail.com Memphis - Support Group Contact: Sally Damron E-mail: srdamron@bellsouth.net Nashville - Support Group Nashville Celiac Support Group (CSA) Contact: Darryl Casey, Co-chair Tel: 615-481-4445 E-mail: DarrylCasey@yahoo.com Texas Dallas - Support Group Lone Star Celiac Gluten Intolerance Group Contact: Rose Mary Simmons 2603 Dorrington Drive Dallas, TX 75228 Tel: (214) 328-7286 E-mail: president@dfwceliac.org Eastland - Resource: Contact: Jill Hollywood P.O. Box 938 Eastland, TX 76448-0938 Tel: (254) 629-1299 Fort Worth - Support Group Contact: Betty Barfield, President North Texas Gluten Intolerance Group North Richland Hills, TX 76182 Houston - Support Group Houston Celiac Sprue Association Janet Y. Rinehart, Chairman 13722 Ashley Run Houston, TX 77077 Tel: (281) 679-7608 E-mail: txjanet@swbell.net Chapter web site: http://www.houstonceliacs.org Midland - Support Group Contact 1: Pat Gatlin West Texas GF Awareness Group 11809 W. County Road, #54 Midland, TX 79707 Tel: (915) 563-4847 San Antonio - Support Group Alamo Celiac San Antonio Contact 1: Anne Barfield 606 Jackson Keller San Antonio TX 78216-7121 Tel: (210) 340-0648 E-mail: AnneBarfield@satx.rr.com Contact 2: Lynn Rainwater 5014 Gemsbuck Chase San Antonio TX 78251-4380 Tel. (210) 509-0179 E-mail: txlynnr@swbell.net Texas Hill Country - Support Group Austin Gluten-Free Friends Contact: Kay Stence 1863 Greenwood Lane Kingsland, TX 78639 Tel: (512) 632-3682 or (325) 388-3103 E-mail: kstence@marykay.com Texarkana - Resource: Contact: Marie Freeman Rt 6, Box 465-F Texarkana, TX 75501 Tel: (903) 793-1392 Utah Salt Lake Gluten Intolerance Group (GIG) St. Mark's Hospital (meeting place) Pam Ward - CoChair Sandi Bigelow - CoChair Tim Coda - CoChair Marcie Coda, Branch Manager E-mail: saltlakegig@gmail.com Vermont Bennington - Support Group Contact: Lynn Grieger Southern Vermont Celiacs RD3 Box 586 Arlington, VT 05250 Tel: (802) 375-9069 St. Albans - Support Group Contact: Suzanne Ludlam Celiac Support Group of Vermont E-mail: rsludlam@yahoo.com Virginia Alexandria, Arlington - Support Group Contact: Jerry Malitz Washington Area Celiac Support Group Email: dcmetroceliacs@gmail.com Chesapeake, VA - Support Group Contact: Dawn Ryan Celiac Disease Foundation Chesapeake Tidewater Chapter E-mail: ctcglutenfree@gmail.com Washington Bellingham - Support Group Bellingham Gluten Intolerance Group Contact: Kelle A. Rankin-Sunter P.O. Box 28894 Bellingham, WA 98229 Tel: (360) 332-7435 E-mail: celiac@nuwworld.com Internet: http://www.glutenfreeway.info Seattle - Support Group Gluten Intolerance Group 15110 10 Ave. SW, Suite A Seattle, WA 98166-1820 Tel: (206) 246-6652 Internet: https://www.gluten.net Renton - Support Group Contact: Lynn Jameson E-mail: Southseattlegfgroup@yahoo.com West Virginia Huntington - Support Group Tri-State Celiac Sprue Support Group Contact: Deborah Yeager 5425 Lea Hill Dr. Huntington, WV 25705 Tel: (304) 733-5867 Wisconsin Appleton - Support Group Fox Valley Celiacs Contact: Helen Morris 1369 Graystone Court Depere, WI 54115 Tel: (920) 337-9235 E-mail: hbmorris1369@sbcglobal.net La Crosse - Support Group La Crosse Area CS Support Group Contact: Mary Lou Balts 700 Angel Ct. Apt.213 Holmen, WI 54636 E-mail: baltskml@centurytel.net Internet: http://www.lacrosseareaceliacs.org/ Madison - Support Group Group: Madison Area Gluten Intolerance Chapter (MAGIC) Contact: Dan Roeske E-mail: president0002@glutenfreemadison.org Marshfield - Support Group Marshfield Celiac Support Group Contact: Marshfield Clinic Nutrition Services Tel: (715) 387-5480 E-mail: carolasher46@gmail.com Milwaukee - Support Group Milwaukee Sprue Crew Contact: Bev Lieven Tel: (414) 354-2354 E-mail: milcs@aol.com

Celiac.com 11/03/2022 - Fair warning, this article talks freely about poop, poop storage, and poop replacement. Basically, this article is all about poop, and the role it might plays in your future good health, so if that's an issue, now is a good time to tune out, or in if you want to learn more. The crucial role of the gut microbiome in maintaining human health is just beginning to be understood. Many different cultures, and more than a few scientists, talk of a gut/brain connection. And healthy poop plays a major role in a healthy gut. We know that patients with C-diff and other gut maladies can benefit from fecal transplants from people with healthy guts. It's done via a medical procedure called fecal microbiota transplantation, or FMT. Some research shows FMT may help treat inflammatory bowel diseases, such as Crohn’s or ulcerative colitis. Studies in animals indicate that FMT may help treat obesity, lengthen lifespan, and reverse some effects of aging, such as age-related decline in brain function. Other clinical trials are assessing its potential for treating cancer. Now scientists are taking a serious look at the idea that banking fecal samples when we're young, and implanting them in our colons later in life, might help reverse damage, and restore gut health. The science behind this is not robust at the moment. It is mainly anecdotal and relies, in part, on extrapolating benefits from existing fecal transplants and extending those to regular people as a way to treat potential conditions later in life. Even so, a number of researchers are taking the lead and encouraging existing stool banks to permit regular folks to bank their poop now, so they can use it in the future when there is more science done to support the concept. That means the researchers feel strongly that future research, data and clinical experience will back them up and confirm their bet. Believe it or not, poop banks are already a thing. Just like sperm banks or blood banks, or any number of other banks for health-related specimens, stool banks exist for treating some of the conditions we've mentioned. So, the whole process of banking poop, would be pretty simple. You would head to your local stool bank. You would then provide a sample, which the bank would screen for diseases, wash, process, and deposit into long-term storage. Then, later in life, your doctors could access the sample for implantation to treat inflammatory bowel disease, heart disease, or type 2 diabetes, or even to restore your gut after medical treatment that wipes out your microbiome, like antibiotics or chemotherapy. In such cases, doctors could use medical procedure called fecal microbiota transplantation, or FMT, to implant your banked stool to revitalize your gut microbiome to its earlier, healthier state, Scott Weiss, MD, Harvard Medical School professor and a co-author of a recent paper on stool banking, told reporters. However, Weiss adds, it is best to use healthy samples, so ideally banking stool between the ages of 18 and 35, or before any serious medical condition impacting the gut. Although samples provided by people who are still healthy, even into their 50s, could still be helpful later. Certainly, a world in which we can treat major diseases with a simple transplant from our personal stool banks is an intriguing and attractive one. Just how much benefit can be gained from FMT remains to be seen, but results like these are encouraging. Stay tuned for more on this and related stories. Read more on this topic at WebMD.com