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Found 72 results

  1. Celiac.com 01/11/2006 - For many years, biopsy of the small bowel demonstrating villous atrophy has been fundamental to the diagnosis of celiac disease. Older celiacs will remember, fondly or otherwise, the Crosby suction biopsy device which was swallowed attached to a long tube and made its way down to the small bowel where, position confirmed by x-rays, it guillotined a small portion of tissue. The procedure was tedious and technical failures common—only identified when the device was hauled up after several hours. Later it became clear that biopsies from the duodenum obtained during endoscopy were just as good, and the biopsy process became a five minute job with no need for X-rays. Nevertheless, many celiacs are reluctant to undergo biopsy and its necessity is increasingly questioned, particularly now that blood tests for celiac-related antibodies are highly sensitive and specific. There are a number of reasons why, in my own practice, biopsies continue to be helpful in celiacs diagnosed in adulthood. Biopsies are necessary when blood tests are negative. While endomysial (EmA) and tissue transglutaminase (TTGA) antibodies are detectable in most cases where villous atrophy is present, 5-10% of patients lack these antibodies1. In this situation, where the story is suggestive of celiac, perhaps with a family history or strongly suggestive symptoms, biopsy is the only way to make the diagnosis. Increasingly, physicians recognize that many patients with gluten sensitivity do not have villous atrophy (Grade III of the Marsh classification) of "classic" celiac disease, but have milder abnormalities such as crypt hyperplasia (Marsh II) or an excess of the inflammatory cells called lymphocytes (Marsh I). Patients in these categories are less likely to have positive serology2. Biopsies are necessary where false positive blood tests may occur. TTGA, particularly where levels are low, may be associated with diseases other than celiac: ulcerative colitis, Crohns disease, arthritis and liver diseases without any evidence of celiac disease have been linked3. Newer TTGA tests have steadily improved in this regard but I still would be reluctant to diagnose celiac on a TTGA test alone. "False positive" EmA is a different issue which I will return to. Biopsies give a baseline for comparison. Suppose a patient starts a gluten-free diet without biopsy—we dont know whether she or he had Marsh I, II or III or even normal histology. A year later, same patient develops new symptoms of diarrhea, weight loss, whatever. Well get a duodenal biopsy as part of the workup, but its going to be difficult to interpret without knowing what things were like before going gluten-free. Specifically, a baseline to look back at tells us whether the small bowel is better, worse or no different, and helps us decide whether we need to focus on celiac disease as the most likely cause of new problems or explore other possibilities involving the rest of the gut. The biggest diagnostic disaster of all, of course, is the gluten-free diet started without any sort of baseline investigation including antibodies, raising the specter of the infamous gluten challenge if a definitive diagnosis is needed. Biopsies provide a "gold standard" assessment of the state of the bowel. There has been much excitement recently about capsule endoscopy, a wireless device the size of a large pill (not to be confused with the Crosby capsule!) which makes its own way down the small bowel taking pictures as it goes. Characteristic abnormalities can be seen in celiac disease, raising the possibility that this device might be useful in diagnosis. If experience with conventional endoscopes is any guide, however, these abnormalities are missing in a sizeable minority of celiacs particularly with mild disease4 (Capsule endoscopy in its present state of development can not take biopsies). Certainly the capsule allows assessment of the bowel beyond the reach of conventional "anaconda-style" endoscopes, but I am not convinced at present that it can replace biopsy. A follow-up biopsy gives an indicator of progress. I offer my patients a repeat biopsy after two years gluten-free and perhaps surprisingly most take up the offer and are keen to hear how things have improved. Ive increased the biopsy interval from one to two years because only 40% of people had complete recovery after 12 months gluten-free5. EmA and TTGA disappearance is only a marker of how successful gluten exclusion has been and is not a reliable indicator of bowel recovery. Does persisting villous atrophy matter if the patient is doing well on a gluten-free diet? Intuitively, one might like to keep a closer eye on the patient with persistently flat biopsies, who could be at greater risk of complications in the future6. The endoscopy not only allows examination and biopsy of the duodenum but also a look at the esophagus and stomach. Sad fact of the ageing process is that you start to collect diseases like trading cards, and just because youre celiac doesnt mean you cant have something else. Its important to have a good look for bleeding lesions in the upper gut even if the blood work for a seventy year old with anemia says celiac (and check out the colon too, but thats a topic for another day). On the other hand, we recognize that biopsies are not always the final arbiter in diagnosis. While the jury is still out on what a TTGA positive, biopsy negative result means with regard to gluten sensitivity, there is plenty of evidence that a positive EmA generally does mean that biopsy abnormalities will follow: My own follow-up of EmA positive, biopsy negative patients indicates that they will develop abnormal histology if not treated7. So it makes sense to start EmA positive people on gluten-free without waiting for significant bowel damage—and as already stated, even a normal baseline biopsy will provide a reference for any problems that might arise in the future. Sometimes I meet a patient with bad gut symptoms but completely normal blood work up and biopsies and when all else fails I will run a trial of gluten-free. It often works, particularly if there is a family history of celiac. But then again, if it doesnt, we have a baseline normal biopsy to say there is no need to persevere. I guess in the future diagnosis of gluten sensitivity will rely on totting up various factors, none individually essential: blood tests, biopsies, family history, genetic testing for the HLA celiac genes. Some researchers are making a case for dropping the biopsy requirement if the antibody blood work checks out in children8, for whom (and for the parents) endoscopy and biopsy is a major issue. In adults however it is quick, straightforward and safe and will remain a key part of my celiac workup. William Dickey is a gastroenterologist at Altnagelvin Hospital, Londonderry, Northern Ireland, with over 400 celiac patients attending his clinics. His interest in celiac disease goes back some fourteen years and he has published extensively on the subject. He is an associate member of Coeliac UKs Medical Advisory Council. References: Dickey W, McMillan SA, Hughes DF. Sensitivity of serum tissue transglutaminase antibodies for endomysial antibody positive and negative coeliac disease. Scand J Gastroenterol 2001; 36: 511-4. Wahab PJ, Crusius JBA, Meijer JWR, Mulder CJJ. Gluten challenge in borderline gluten-sensitive enteropathy. Am J Gastroenterol 2001; 96: 1464-69. Di Tola M, Sabbatella L, Anania MC, Viscido A, Caprilli R, Pica R, Paoluzi P, Picarelli A. Anti-tissue transglutaminase antibodies in inflammatory bowel disease: new evidence. Clin Chem Lab Med. 2004;42(10):1092-7. Oxentenko AS, Grisolano SW, Murray JA, Burgart LJ, Dierkhising RA, Alexander JA. The insensitivity of endoscopic markers in celiac disease. Am J Gastroenterol. 2002 Apr;97(4):933-8. Dickey W, Hughes DF, McMillan SA. Disappearance of endomysial antibodies in treated celiac disease does not indicate histological recovery. Am J Gastroenterol 2000; 95: 712-4. Meijer JWR, Wahab PJ, Mulder CJJ. Histologic follow-up of people with celiac disease on a gluten-free diet: slow and incomplete recovery. Am J Clin Pathol 118(3):459-63, 2002 Sep. Dickey W, Hughes DF, McMillan SA. Patients with serum IgA endomysial antibodies and intact duodenal villi: clinical characteristics and management options. Scand J Gastroenterol 2005: in press Barker CC, Mitton C, Jevon G, Mock T.Can tissue transglutaminase antibody titers replace small-bowel biopsy to diagnose celiac disease in select pediatric populations? Pediatrics. 2005 May;115(5):1341-6
  2. So I was diagnosed with " Severe Celiacs disease " last year, but I was told nothing was seen in biopsy and I haven't done blood work yet, the only thing that indicated Celiacs was the damage done to my villi.... before I was diagnosed I was very sick I couldn't eat at all, like throwing up, diarrhea, chest pain, neurological problems and headaches, thought I had cancer. Ok skip forward, I've been on this gluten free diet since November of last year and decided to go ahead and cheat my diet, well I've been eating nothing but gluten for over a week and wasn't getting sick but now I'm starting to get chest pain, weird headaches and a little bit of an upset stomach... Is it possible I wasn't getting sick because I'm now I silent celiac even tho before symptoms were obvious, or could I have been misdiagnosed? Still haven't done blood work and nothing was in the biopsy, However my villi is damaged severely, is more positive I'm sensitive to gluten and the damage of the villi is caused by something else? Please help me, I'm so frustrated with my body because of all this and even more frustrated I wasn't getting sick before but now I think I am.
  3. I was diagnosed with Severe Celiacs last November plus 2 forms of glaucoma and recently degenerative arthritis. I'm only 22 and finding all this out is exhausting and stressful, well recently I decided to take a break from the gluten free diet and ordered a stuffed crust pizza from pizza hut, a few things from taco bell and a buffet at golden corral! And I have not gotten sick! Maybe I rash but the rash was there before hand, now I'm concerned my doctor was wrong and misdiagnosed me somehow? Before I started the gluten diet I was severely sick, throwing up and couldn't eat, I thought I had cancer, can someone help idk who else to go to, is this normal? Getting sick and then not getting sick? Oh and the rash has been there for weeks doctor has no idea what it is gonna see specialist, auto immune diseases are in family, I did have pelvic inflammatory disease could that of caused something?
  4. Celiac.com 09/24/2010 - A team of researchers recently found that people with celiac disease, even those following a gluten-free diet, also commonly suffer from sleep disorders that are related to depression, anxiety and fatigue. Since anxiety and depression both occur at higher rates in people with celiac disease than in the general population, the researchers were curious to see how celiac disease might affect quality of sleep. The research team included F. Zingone, M. Siniscalchi, P. Capone, R. Tortora, P. Andreozzi, E. Capone, and C. Ciacci. They are affiliated with the Department of Clinical and Experimental Medicine at Federico II University of Naples in Italy. In addition to finding that sleep disorders commonly affect people with celiac disease, regardless of gluten-free status, they also found that sleep disorders are less common in celiacs who score higher on quality of life scales, while those with low quality of life scores suffer at higher rates. For their study, the team evaluated people celiac disease at diagnosis, celiacs on a gluten-free diet at follow-up, and a group of healthy control subjects. All patients completed the Pittsburgh Sleep Quality Index (PSQI), SF36, Zung and Fatigue scales and State-Trait Anxiety Inventory (STAI). Their results showed that people with celiac disease at diagnosis and those following a gluten-free diet showed higher PSQI scores than did healthy volunteers (P < 0.001). PSQI scores were no lower for those following a gluten-free diet than for the others with celiac disease (P = 0.245). People with celiacs disease at diagnosis and those on a gluten-free diet scored similarly on the other tests, but differed sharply from the healthy control subjects. Patients who had higher individual scores for overall physical and mental fitness (r = −0.327, P = 0.002, and r = −0.455, P < 0.001, respectively) had higher overall PSQI scores. Factors influencing sleep quality were depression (r = 0.633, P < 0.001), fatigue (r = 0.377, P < 0.001), state anxiety (r = 0.484, P < 0.001) and trait anxiety (r = 0.467, P < 0.001). So, if you or someone you love has celiac disease, be prepared to address sleep issues, and maybe consider doing everything possible to ensure a good night's rest. Source: Alimentary Pharmacology & Therapeutics. DOI: 10.1111/j.1365-2036.2010.04432.x
  5. 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
  6. Celiac.com 10/26/2016 - There's been a bit of confusion lately over claims by the Canadian Celiac Association (CCA) that the optical sorting system used by General Mills to produce gluten-free Cheerios and other cereals is somehow flawed, and their products not safe for people with celiac disease. The CCA has issued a warning to Canadian consumers with celiac disease against eating gluten-free Cheerios products, based on concerns of possible contamination due to a what they say is a faulty sorting process. General Mills debuted their patented optical sorting process and launched gluten-free Cheerios in the U.S. last summer, and they spent millions of dollars developing the new technology. Later, the company voluntarily recalled nearly 2 million boxes, when a plant mixing error caused wheat flour to mixed with oat flour. However, since that time there have been no known reports of systemic contamination, which is what the CCA is alleging. General Mills launched five flavors of gluten-free Cheerios in Canada this summer: Original, Honey Nut, Multi-Grain, Apple Cinnamon and Chocolate. Clearly, the CCA is looking to protect people with celiac disease from the perceived possibility of gluten contamination, but the CCA's statement goes beyond urging simple caution, and urging celiacs to report any cases of gluten contamination and to save boxes for lab testing. "Hearing stories…" Samantha Maloney, former president of the Ottawa chapter of the Canadian Celiac Association, told CBC Radio's All In A Day that the General Mills process of sorting grains to produce gluten-free cereal is "flawed." She and her group claim that they have made the claim because they have "heard stories." Has Maloney or anyone in her group actually followed up on these claims, these "stories" she's "hearing?" Without offering any proof or names, or scientific data for making her claim, Maloney went on to say that General Mills is having "a bit of a problem" with the way they are cleaning their oats. Is she saying that the product is being contaminated by gluten? It seems so. Well, if that's true, then surely some celiac suffer who ate Cheerios and had a bad reaction must have a box of cereal that can be tested. If General Mills is churning out box after box of gluten-tainted cereal and labeling it "gluten-free," then it seems like a massive scandal and lawsuit waiting to happen. Maybe some enterprising person, or even a law firm, can go grab some boxes and get them tested, and add some actual evidence to these claims. One would think Maloney and the CCA would confirm such information beforehand, rather than first making the claim, and then asking people to provide confirmation after the fact. If Maloney's claims are proven true, then General Mills deserves to be called out, and Celiac.com will certainly be among the first to report it. Until then, saying that General Mills is knowingly using a faulty system to sort their gluten-free oats is simply irresponsible hearsay, and doesn't really help provide accurate information for consumers with celiac disease, something the Canadian Celiac Association claims is part of its mission. It's one thing to urge caution, and to call for testing and evidence gathering that supports any claims of gluten-contamination, but it's entirely another to claim without any evidence a product and process are flawed and likely to harm people with celiac disease. What happens if the General Mills process turns out to be okay? What happens if Gluten-Free Cheerios and other products are perfectly safe? That means the CCA was not only wrong, they were wrong without even having any facts to support their original claim. How does that help people with celiac disease or the CCA? Celiac.com continues to support efforts by the CCA and other groups to inform and protect people with celiac disease, but we also urge proper facts, data, context and evidence to support any hard claims about products, gluten-free or otherwise. Regarding the status of General Mills' patented optical sorting process for producing gluten-free grains for their Cheerios and other gluten-free products, Celiac.com urges caution on the part of individual consumers. Currently there is no evidence to suggest that any of these products not gluten-free, but, there is also no evidence that similar gluten-free oat cereals made by smaller companies do a better job to ensure that their products are safe, yet there is no controversy about them. Ultimately people with celiac disease should use caution, and, in the event they experience gluten contamination, they should save the box and report it to the Canadian Celiac Association, and/ or any of the other official resources listed on the CCA website: Canadian Food Inspection Agency (all provinces except Quebec) MAPAQ (Quebec only) General Mills Customer Service In the USA, the FDA. Stay tuned to celiac.com for information on this and related stories.
  7. 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.
  8. Hello! I have read many forums on this site over the past few months and it has been incredibly helpful. I am here now because I am basically in a "resource desert" as far as services and doctors in my area and I desperately need advice. Question & Concern #1: I have been gluten free for about 6 months now due to problems that started about a year and a half ago including constipation, gas, bloating, anxiety & depression. After going gluten free my symptoms quickly resolved themselves and I have been happily gluten free ever since. However, my doctor (I have had no previous medical issues and so I trusted her opinion without doing my own research -believe me I learned my lesson) does not connect those symptoms with Celiacs disease so even though I thought that there was a connection and voiced my opinions, testing was not done. I was told that it "didn't matter" if I had the diagnosis since the treatment either way is eating gluten free. I have learned from this site that was 100% wrong. Although I may not have Celiacs, even if there is a 1% chance that I do, I feel that I deserve to know. I have a doctors appointment this week and I really need advice for what to fight for, so far I have heard of these options: 1. Eating gluten for 90 days and getting a blood test done (although I have heard this is not the most accurate way to diagnos Celiacs and I dread the thought of eating gluten for 90 days) 2. Eating gluten for 2 weeks and getting an endoscopy - am I allowed to request this?? 3. Genetic testing - sort of what I am leaning towards right now because if I do have the genetic disposition I would just live the rest of my life like I have Celiacs. Is there any reason that I NEED the actual diagnosis? If you were in my situation what would you recommend? Question & Concern #2: I was tested for hypothyrodisim because everyone in my maternal family has been diagnosed with that but they all were diagnosed later in life (early 40s, I believe my mother went through premature menopause becuase it was undiagnosed for so long). Nobody in my family has heard of Hashimotos but when talking with my friend who is a nurse who has Hashimotos she said that sometimes the TSH test that I was given won't pick up on that. My TSH result was a 2.6 which I believe is slightly higher than the ideal range although the normal range on that result was considered up to a 5. I am going to go in and request to make sure that I don't have hypothyroidism of any kind including Hashimotos. Does anybody have any relevant advice for what tests I should request? I have been googling it but I was wondering if anybody went through that and has personal experience for the tests. I also really need to know: - Can going gluten free help cure Hashimotos/Hypothyrodism symptoms? (I also am FREEZING cold all the time which is another indicator of that and most of the reasons I went gluten free could be indicators of Hashimotos as well - I do know there is a connection but I really didn't know if eating gluten free would help alievate the symptoms). -Will going gluten free affect getting a diagnosis for Hypothyroidsm/Hashimotos? To add on to it - My husband & I were planning on trying to start a family in March so I really pray that all this can be resolved quickly so we can start our family in the next year because I don't want to start trying until I have some answers. ANY advice/websites/articles/books would be incredibly helpful for me right now. If you know anybody on the site who has experience with Hashimotos and gluten sensitivity or Celiacs I would be super appreciative if you could reach out to them to get me some help. I am in the process of finding a new doctor but it is a slow process (no appointments in my area until February) so I am keeping my appointment with the doctor who doesn't want to do the Celiacs testing so I want to be as informed as possible so I can really stick to my guns and insist on what is best for me (and my future babies!!). I feel lost & not sure what information is reliable so I'm just looking for people who have more experience than I do to help! Thank you all so much ~Shannon
  9. Hey guys, I will try and keep this as short and concise as I can. About a year ago, I had a very long day at work and ate a lot of chicken wings and a very poor diet. The next week, I felt terrible. I head headaches, GI issues, fatigue and some muscle aches and nasal congestion. I thought it was just a stomach bug, but a cycle of this sickness continued throughout the whole summer. Basically every other week I would be sick with fatigue, headaches, nausea, GI issues and I felt feverish and nasal congestion. I finally went in for blood work (CBC, vitamin and mineral levels were tested) and everything came back normal. I was perscribed a probiotic and it didnt help. A couple months later, I went in for a colonoscopy and an endoscopy and tested negative for Celiacs and just had mild acid reflux. I still stopped eating gluten since January and felt better. However, there were still times that I felt "crappy" again. This could have been from cross contamination or me just eating gluten. But basically, I came home from college and I felt great for about 6 weeks. Then, I accidentally ate Ragu sauce that was not gluten free and I felt crappy again with feverish feeling, headaches, fatigue, nasal congestion and diziness. Ever since then, I have felt "crappy" 3 seperate times. Two weeks ago, I ate meatloaf twice with bread crumbs and a whole beer (which i knew was gluten). A couple days after I ate the meatloaf, I started to get headaches and the past couple days (about a week after drinking the beer) have been terrible with bad headaches, body aches and feverish with nasal congestion again (so ive been sick for about 12 days in a row now) I am scheduled to go in to see an allergist in about a month..... 1) What tests should I ask for? I think that I have a gluten intolerance or a sensitivity..... 2) Do my symptoms match up with a person with a gluten intolerance? THANK YOU FOR READING THIS WHOLE THING. I REALLY NEED AND APPRECIATE THE HELP!!!
  10. Celiac.com 08/14/2017 - Pizza chain Papa John's is warning consumers that its new gluten-free pizza is not safe for people with celiac disease or serious gluten intolerance. After announcing on Monday that it was introducing a gluten-free crust made with sorghum, teff, amaranth, and quinoa at locations across the US, the company warned that it does not recommend the crust for people with a serious gluten intolerance. An official statement from the company reads in part: "Papa John's employs procedures to prevent contact with gluten…it is possible that a pizza with gluten-free crust could be exposed to gluten during the in-store, pizza-making process. Therefore, the brand does not recommend its Gluten-Free Crust made with Ancient Grains for customers with Celiac Disease or serious gluten intolerances." This gluten-free pizza dustup is similar to efforts by Dominos to debut a gluten-free crust, but not a gluten-free pizza. Now, can major pizza makers actually produce a gluten-free pizza for those who need it? Yes. Take Pizza Hut, for example, which has worked hard to offer a genuinely gluten-free pizza experience. Pizza Hut strives to serve certifiably gluten-free pizzas by storing ingredients in designated gluten-free kits. Workers wear gloves to prepare the pizzas, bake the pizzas on parchment paper, and use a designated gluten-free pizza cutter. Even so, Pizza Hut website says it cannot guarantee that the pizza is prepared in a 100% gluten free environment, and that customers should consult a medical advisor before ordering. So, that's your slice of gluten-free pizza insight for now. Read more at: businessinsider.com
  11. Celiac.com 01/21/2013 - At the end of a long day of class and meetings, Morgan Hembarsky loved to come home to her four roommates eagerly awaiting her to cook their weekly meal together. Immediately when she walked through the door the most important thing to talk about was food, conversation could wait. Was it pasta with marinara and veggies or chicken Parmesan with warm rolls night? "We try to have dinner together at least once a week to catch up," said Hembarsky, a senior at Lehigh University. The women sat down to a warm meal together and gossiped about their Lehigh University professors' bad jokes and the new romantic comedy in nearby Lehigh Valley theaters. Cooking and chatting: a girl's perfect way to unwind at the end of the day. But days of cooking with her roommates are gone. Early in the fall of 2011 after months of stomach pain, Hembarsky visited a doctor and received the answer to her suffering. The culprit, celiac disease, which is a condition in which one's body cannot digest gluten and eating it damages the small intestine. Because many of the foods Hembarsky and her friends often used to make contained gluten, like pasta and bread, that meant no more pasta nights with her friends. In October 2011 she gave up foods with gluten, the killer protein found in many grains and flours. Being diagnosed with celiac forced a change to the social calendar. "It's something you learn to live with and you learn what healthy decision you need to make," said Hembarsky. Hembarsky is not alone. For many celiacs in Bethlehem, social opportunities are hindered by dietary restrictions such as not being able to eat a hamburger bun or drink beer at a tailgate because they have gluten. Instead of going out with friends, they cook individualized meals at home. Now with more people being diagnosed as gluten-intolerant or celiac – in fact one out of 133 people in the United States is affected by celiac disease, according to the celiac disease Foundation – the choices of where to buy groceries and whether one should go to a restaurant taking the chance of feeling like a burden are at the forefront of people's minds. Take Tabitha Echavarria, a senior at Lehigh University, who was diagnosed with celiac last July 1. "The biggest change in my life has been taking charge of my diet," said Echavarria. "I know 100 percent of the ingredients of everything I eat because I most likely made it from scratch. I never eat anything without asking what is in it. " Echavarria said senior year of high school she experienced persistent migraines, numb feet, chest pain and stomach aches – symptoms that other celiacs often suffer as well. After constantly changing her diet hoping to find the trigger to the pain and receiving negative blood tests, she visited every doctor she could find. "The previous year I had cut out bread from my diet ‘cause I knew something was wrong," said Echavarria. "Then eventually I just really couldn't eat ever and went to like every different doctor available to figure it out. " Now on a Friday night when her rugby teammates go out to hibachi or Sal's starving for a delicious meal, Echavarria makes herself dinner beforehand so she can still tag along to the restaurant. Going to meals with friends is no longer about the eating, it's about the company. While Echavarria still goes out to restaurants for the social aspect, other celiacs avoid eating out as much as possible. Three weeks ago, Andrew Bench was sitting at his desk at King, Spry, Herman, Freund & Faul Law Firm in Bethlehem, Pa. , with a stomach ache when he decided to stop eating out as much as possible because of the potential cross contamination. He said many restaurants in the Lehigh Valley have cross contamination even though the waiters told him that the kitchens were being careful. Flash back to when he was diagnosed as celiac a year ago. He described the feeling as a concussion mixed with sinus pressure. Cross contamination could result in the same thing, or worse. Bench recommends Tapas on Main on North Side as a safe gluten-free option. Echavarria likes Red Robin for their protein-style burgers and La Lupita for the corn-based options while Hembarsky prefers salads at Bravo and sushi at Asian Bistro. While restaurants are introducing gluten-free menus, Bench said that one slip-up in the kitchen can mean hours of stomach pain. Echavarria recalled getting sick after ordering eggs, a naturally gluten-free dish, at a restaurant. Later she found out that the eggs had pancake batter in them. Restaurants may not think about the danger to celiacs by adding gluten to a naturally gluten-free food. "I think what I am most looking forward to in the future is restaurant activism," said Echavarria. "I would just like to have the option of eating with my friends knowing I'm not going to get sick or that I'm not annoying the people that work there. "The Lehigh Valley is embracing the gluten-free movement, slowly but surely. Wegmans, Giant Food and ShopRite have gluten-free aisles that provide a wide range of options. As he was giving granola samples at Wegmans, Calvin Virgillo, operations and sales at The Granola Factory, recognized a need for gluten-free, nut-free granola, which will be available in 2013. "It doesn't matter how good our granolas if there are people who won't buy it because they're gluten free or have a nut allergy," said Virgillo. With increasing options of places to purchase groceries and dine out, the community is recognizing the gap for this niche market of gluten-free consumers. A day will come when gluten-free diners won't have to worry about missing out on social life because of their diets. Until then, Hembarsky must deal with biting into a dry, hard piece of bread and baking her own treats when she wants to socialize with her roommates. "I think bread is the hardest to be gluten-free because it [the gluten-free version] doesn't taste like bread, but a majority of them aren't that great and they come frozen," said Hembarsky. "But everything else, I feel like you don't have to sacrifice at all. "
  12. I have just been diagnosed with celiacs and believe that I have had it for years but my doctors didn't catch it. Anyways around the time where my symptoms started getting worse which was 3 years ago I started getting migraines when I would eat chocolate. I am wondering if anyone else experienced this and if it got better once you went on a gluten free diet. I can easily try for myself but knowing how sick it made me last time I'm nervous to introduce it back into my diet. Thank you!
  13. Celiac.com 08/09/2017 - There have been a number of studies showing a strong connection between celiac disease and dental enamel defects (DEDs), however, the exact relationship is still unclear. To get a better understanding, a team of researchers recently set out to evaluate DEDs in people with celiac disease by looking at how long it took them to begin a gluten-free diet (GFD). The research team included AM de Queiroz, J Arid, FK de Carvalho, RAB da Silva, EC Küchler, R Sawamura, LAB da Silva, and P Nelson-Filho. They are variously affiliated with the Department of Pediatric Dentistry, University of São Paulo - School of Dentistry of Ribeirão Preto, Ribeirão Preto, SP, Brazil, and the Department of Childcare and Pediatrics, University of São Paulo School of Medicine of Ribeirão Preto, Ribeirão Preto, SP, Brazil. For their study, the team had a pediatric dentist examine forty-five children with celiac disease. The dentist then classified DEDs by the type of teeth affected. The study team divided celiac disease patients into two groups, those with and those without DEDs. They then tested the differences between these groups using chi-square or Fisher´s exact tests and t-test to compare differences between means. They used the Pearson coefficient test to determine the correlation between the age at gluten-free diet introduction and number of teeth with defects. They found that patients with Molar Incisor Hypomineralisation (MIH), a condition affecting the enamel of permanent teeth, were more often introduced earlier to the GFD (p = 0.038). They also saw a connection with molar DED (p = 0.013). Their study suggests that enamel defects in the molar are connected with the time that celiac disease patients were introduced to a gluten-free diet. What this means for patients with celiac disease remains to be seen. Source: Spec Care Dentist. 2017 Jul;37(4):194-198. doi: 10.1111/sceliac disease.12227.
  14. Celiac.com 11/11/2016 - Do allergen advisory statements for wheat help US consumers with celiac disease make safe food choices? A team of researchers recently set out to review food that were not labeled gluten-free, but which appeared to be free of gluten ingredients based the ingredients list. The product labels indicated that the products contained no wheat, barley, rye, malt, brewers yeast. The research team included T. Thompson, TB Lyons, and A Jones. They are variously affiliated with Gluten Free Watchdog, Manchester, MA, USA; the Department of Clinical Nutrition, MetroHealth Medical Center, Cleveland, OH, USA, and with Mary Rutan Hospital Nutrition, Bellefontaine, OH, USA. Looking for allergen advisory statements noting wheat, gluten or both, the team retrospectively reviewed labeling information for 101 products tested for gluten content. They tested products through the gluten test reporting service Gluten Free Watchdog, LLC in Manchester, MA, USA. The review included all commercially available products tested by Gluten Free Watchdog not labeled gluten-free or low gluten at the time of this analysis. Gluten testing was conducted via Bia Diagnostics in Burlington, VT, USA. Each product sample was tested in duplicate using the Ridascreen Gliadin sandwich R5 enzyme-linked immunosorbent assay (ELISA) Mendez method (Ridascreen Gliadin R7001) and extracted with the cocktail solution (Art. No. R7006—official Mendez method) following the kit manufacturer’s directions (R-biopharm, Darmstadt, Germany). Seven of the 14 foods with quantifiable gluten in this assessment are single-ingredient foods, such as oat fiber, spices, and green tea leaves. Many single-ingredient foods are considered by consumers to be naturally gluten-free. However, US grain standards allow certain percentages of foreign material in grains, seeds and legumes. On the basis of this analysis, the current use of allergen advisory statements for wheat or gluten are not useful predictors of whether or not a single or multi-ingredient food product contains 20 or more p.p.m. of gluten. The authors are urging the regulation and standardization of such precautionary statements so that they are helpful to gluten-free consumers. Source: Eur J Clin Nutr. 2016 Sep 14. doi: 10.1038/ejcn.2016.155.
  15. Celiac.com 02/06/2015 - Australia is home to some of the most stringent gluten-free product standards in the world. Under current standards, all “gluten free" products sold in Australia must contain about three parts or fewer per million. The food industry would like the standard set at 20 parts per million, which would bring Australia into line with the United States, and the EU. Moreover, Coeliac Australia, a major celiac advocacy group, has suggested that Australia’s strict standards are becoming unworkable, as improved tests permit detection of smaller and smaller amounts of the gluten protein. The group has signaled an openness to the industry plan to lower the standards to 20ppm gluten content. Such a move would allow a much wider range of products to be sold in Australia as “gluten-free, ” but would potentially impact hundreds of thousands of Australians who suffer from celiac disease and gluten-sensitivity, many of whom who fear it will save money for manufacturers while triggering severe illnesses in their population. The push to change the definition of "gluten free” is being driven by the food and grocery council, which includes major grocery chain Coles. Coles happens to be one of Coeliac Australia’s biggest sponsors. However, in the face of vociferous opposition to such changes, Coeliac Australia has backtracked from its initial support, and has announced that it will now review its position. What do you think? Is Australia’s gluten-free standard too tough? Will it be better to change the standard to match that of the U.S. and the E.U.? Or would it be better to change American and European standards to match Australia. Share your thoughts below. Read more at SMH.com.
  16. Hello, I am a college student and I was diagnosed with Celiacs about three months ago. I have been doing okay with the new diet. The first month was rough figuring out what I can eat and anxiety about gluten crumbs being everywhere, but starting to get the hang of it. I was feeling better, but I went on spring break a week ago and ate out a lot. I was very careful and vetted my waitress and only have a few "risky" meals. I had a few days of feeling 'blah' and one day of diarrhea. Ever since then I have been quite constipated and have been feeling like I did before my diagnosis (before diagnosis I yo-yoed between constipation and diarrhea a lot). It is possible I could have had some cross contamination or some gluten somewhere in there. Any recommendations on how to get gluten out of your system once you have had some? and how to get back to a health state after exposure?
  17. I got diagnosed with gastritis due to excessive alcohol use and have continued to have the gastritis for the past two months. About a month ago I started having digestive issues and some symptoms of celiacs. The GI and my PCP have said that alcohol shouldnt be affecting my system anymore because I haven't drank in two months and the inflammation in the stomach should have healed so something else is causing it. Considering celiacs or IBS. But what I'm wondering is did the excessive alcohol use trigger the celiacs to appear? I really hope not because this is really killing me and I'm thinking back to all the moments I could have chosen to not drink. Please help!
  18. Celiac.com 01/26/2017 - The only currently effective therapy for celiac disease is for patients to follow a gluten-free diet. However, no serum marker for gluten intake has yet been found, so it's not always easy for doctors to tell if patients are following their diets properly. A team of researchers recently set out to evaluate the use of alkylresorcinol concentrations for detecting dietary gluten intake in humans and mice. The research team included R. S. Choung, J. A. Murray, E. V. Marietta, C. T. Van Dyke, and A. B. Ross. They are variously affiliated with the Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN, USA, and with the Department of Biology and Biological Engineering, Chalmers University of Technology in Gothenburg, Sweden. For their study, they compared alkylresorcinol concentrations among 34 treated patients with celiac disease, 36 untreated celiac disease patients and 33 control subjects. They also evaluated seven additional celiac disease patients whose serum samples were available at diagnosis and after gluten-free diet. In mice, they compared alkylresorcinol concentrations in the serum of five mice fed a regular chow, and 10 mice fed lifelong with a gluten-free chow. In addition, They also assessed the effect of added gluten on alkylresorcinol concentrations. Their study indicates that serum alkylresorcinol concentrations could be a useful marker for dietary gluten in celiac disease. Certainly, having an easy, reliable way for doctors to spot dietary gluten will be useful in helping people with celiac disease maintain their required gluten-free diets. Source: Alimentary Pharmacology & Therapeutics. DOI: 10.1111/apt.13917
  19. Celiac.com 11/21/2016 - This article is the result of an email exchange between Scott Adams and Dr. Sachin Rustgi, which took place between January and March, 2014. Scott Adams: For many years researchers have known that a non-genetically modified, celiac safe wheat does, in fact, exist. Please see: Is Triticum Monococcum (Einkorn) a Safe Wheat for those with Celiac Disease? Baking Quality Wheat Ancestors May be Safe for Those with Celiac Disease I believe that what you are actually doing, which is supported by an approximately $900K corporate grant (if I recall correctly), is to create a GMO version that you can patent in order to make money selling the seeds. This may not be necessary, as what you seek already exists naturally, and I did explain this to your cooperator years ago. Sachin Rustgi: We are aware of these publications mentioned in your post. It is unfortunate that some of these research papers make broad claims not fully supported by the data presented in these reports. This practice is damaging to society in these two ways: i) These publications mislead the public, which gives rise to misconceptions or myths, making it difficult for the general public to accept other innovative ideas. ii) It could even negatively impact public health if the results were blindly accepted and changes were made in routine eating practices without having careful scientific scrutiny of the findings. The popular press and media is partly responsible, because without assessing the credibility of results, they pick broad claims from these publications and serve them to the public in language laden with emotional impact, which the public receives and bases their opinion on. This is also true for the general claims made in the publications cited earlier. Different celiac patients are sensitive to different ‘gluten' proteins (prolamins). If one feeds peripheral blood cells sampled from a patient or a small group of patients (from a specific geographical location) with gluten proteins derived from a wheat genotype, it is expected either to see a reaction (monitored by the production of interferon gamma) or no apparent effect. But in the latter case it does not mean that the wheat genotype is non-toxic to all celiac patients. Because the sample is not a good representative of the genetic variability for disease susceptibility available in the global population, and is likely representing the prevalent disease predisposition allele present in a population inhabiting a particular geographical area or a common disease predisposition allele existing in a larger population (like the one that interacts with the immunogenic 33-mer peptide derived from alpha 2 gliadin). Thus, these T-cell based assays using cell-lines restricted to specific gliadin epitopes are not sufficient to claim general low-toxicity of wheat lines for all celiac patients. I also recommend that readers consult the following publications: Kasarda DD (2007) Letter to the editor: Triticum moncoccum and celiac disease. Scandinavian Journal of Gastroenterology 42(9):1141-1142; Vaccino P, et al. (2009) A catalogue of Triticum monococcum genes encoding toxic and immunogenic peptides for celiac disease patients. Mol Genet Genomics 281(3):289–300. The results of screening hexaploid wheat material under the Celiac Disease Consortium (CDC) funded projects in the Netherlands resulted in a number of publications (Molberg et al. 2005; van Herpen et al. 2006; van den Broeck et al. 2009; van den Broeck et al. 2010). But the authors of these publications never claimed that the material can be used generally. Rather, they suggested these lines to have ‘low-toxicity', as they are devoid of specific epitopes or gluten proteins. Thus, they are good for consumption by a group of celiac patients who share a specific susceptibility allele. We have summarized this material and associated limitations in our publication under two headings, "Wheat Genotypes Naturally Deficient in Immunogenic Gluten Peptides" and "Discussion" [consult Wen et al. 2012 Proc Natl Acad Sci U S A 109(50):20543-20548 for details]. In addition, there is a misconception that with breeding for improved yield, protein content and quality has enhanced the toxicity of the wheat lines, which has resulted in higher incidence of disease over the last couple of decades. Although careful analysis of the facts suggests that nothing has changed over time other than eating habits, procedures of disease diagnosis (became more sophisticated) and public awareness grew, which might have resulted in this increase in the estimated number of celiac patients [also consult Kasarda (2013) J Agric Food Chem 61:1155-1159; Brouns et al. (2013) J Cereal Sci 58:209-215]. However, it is possible to identify low toxicity wheat lines showing reduced accumulation of certain prolamins or immunogenic epitopes, but these lines are not good for general use by celiac patients making labeling of these lines a nightmare, because with the present technology it almost impossible to make recommendations to the patients that they are sensitive only to a specific gluten protein and thus can consume a particular wheat variety. Thus, this trait is an obvious candidate for genetic engineering. Two major achievements in this direction are: i) Gil-Humanes J, Pistón F, Tollefsen S, Sollid LM, Barro F (2010) Effective shutdown in the expression of celiac disease-related wheat gliadin T-cell epitopes by RNA interference. Proc Natl Acad Sci USA 107(39):17023–17028. ii) Wen et al. (2012) Structural genes of wheat and barley 5-methylcytosine DNA glycosylases and their potential applications for human health. Proc Natl Acad Sci U S A 109(50):20543-20548. Collectively, as different celiac patients have sensitivities for different gliadins and glutenins, it is almost impossible to breed wheat lines safe for all celiac patients using conventional breeding approaches. A second issue is the identification of a product's suitability for a group of celiac patients and its labeling, which would be a great logistic challenge. After careful scrutiny of the literature and that the Codex Alimentarius Commission declared that all wheat, barley and rye species including spelt (Triticum spelta L.), khorasan or kamut (T. polonicum L.), durum, einkorn (T. monococcum), triticale, tritordium and their hybrids are immunogenic, and should be avoided by celiac patients (also consult http://wheat.pw.usda.gov/ggpages/topics/celiac.html) add to that challenge. Moreover, some individuals are now known to be sensitive to oat gluten proteins (however, all oat varieties are not toxic, e.g., PrOatina™), and in rare cases, some are even sensitive to maize gluten proteins. According to the latest (August 2, 2013) FDA recommendations any product having Another issue that I want to raise is genetic modification. Why can't we look at transgenics more objectively without having negative feelings toward the technology before we start? Of course, researchers should first look for a solution in nature, and that's what we did, but there is no perfect solution available in nature. Although, the approaches we undertook are inspired by nature, the only way to deliver them is through biotechnology. This approach is where we are silencing the transcriptional regulator of all immunogenic prolamins. It was inspired by a mutation in a regulatory gene in barley. But, this mutation is ‘leaky'. That means it is not completely devoid of immunogenic prolamins. Similarly, the approach to express gluten-detoxifying enzymes in wheat grains was inspired by a barley enzyme that expresses during grain germination and degrades gluten proteins, along with a similar enzyme (but with complementary function) from the black mold Aspergillus, which naturally grows on bread slices. Another example is enzymes secreted by Lactobacillus species, a cocktail of acidifying and proteolytic lactic acid bacteria traditionally used for long-time fermentation by sourdough. These natural enzymes are capable of detoxifying gluten but express at a wrong time or a wrong location or are industrially inapplicable. We have no intention to patent the technology or the product. We will license the varieties to the Washington Grain Commission, which is a general trend at Washington State University. Scott Adams: From my perspective, your endeavor faces two big problems: What you end up with will be a genetically modified form of wheat, which is not allowed in Europe and other places (the list seems to be growing here); What you end up with will still be called wheat, and according to current laws in the USA, cannot be labeled "gluten-free." This is a huge issue that would also be true for einkorn. It would likely be a much easier process to further test einkorn's safety in celiac patients than to create a new genetic variant (that would really be similar to einkorn...right?), then have to go through the same process of testing. Sachin Rustgi: I agree with you on the first point, but as I mentioned previously, this debate about the so-called ‘GMOs' will settle down with time, which has happened in the past with several other technologies. For instance, people initially learned to make genetic crossbreeds in the 18th century, but the general acceptance of this technology as a breeding tool had to wait until the rediscovery of the Mendel's laws in 1900. Embracing this technology resulted in the production of hybrid maize that significantly boosted its yield. The second example is the reluctance to use induced mutagenesis in plant breeding, which is now well accepted and used as a standard procedure to increase genetic variability. The major advantage of shifting to this technology was the production of semi-dwarf rice and wheat cultivars that resulted in the ‘green revolution'. Similarly, the general public will accept the transgenic approach, as there is no other way to meet the growing demand for quality food. I foresee the outcome as an ‘evergreen revolution'. Moreover, if you look in depth at the outcome of using any of the above mentioned procedures, it is always a genetically modified organism, but it is up to us where we would like to draw a line. We are not in favor of releasing ‘reduced or low-toxicity' wheat lines because, as I mentioned earlier, sensitive to, at present. there is no way of telling patients which gluten protein(s) they are sensitive to. In addition, the wheat varieties are not marketed on the basis of their protein composition (however, it is possible to determine the protein profile of a wheat variety). Thus, our ultimate goal is to develop ‘celiac-safe' wheat genotypes completely devoid of immunogenic prolamins or expressing large quantities of gluten detoxifying enzymes. In the former case, the gluten-level of the wheat line is expected to be lower than or equal to the FAO recommended limit of 20 ppm, allowing its labeling as a ‘gluten-free' commodity. In the latter case, the genotype will contain the dietary enzyme supplement within its grains, and hence, will be labeled differently, and will serve as a natural dietary therapy for celiac patients. (These grains or derived flours can be blended into normal flour to bake different products). Two research groups, one in the US and the other in The Netherlands, are producing large quantities of these therapeutic enzymes in bacteria, and their utility as a dietary therapy for celiac patients is currently under advanced clinical trials. In this situation it will be the consumer's decision whether to get enzymes derived from a bacterium to be use as a food supplement or from wheat bread. These enzymes will not only be advantageous for celiac patients but will also prove beneficial to healthy individuals as these enzymes dramatically improve gluten digestibility and bioavailability. Healthy individuals, like celiac patients, cannot fully digest gluten proteins, but unlike celiacs, their intestines are impermeable to the undigested/partially digested gluten proteins, thus they are capable of flushing it out of their systems before it can induce an immune response. (Healthy individuals also do not carry disease predisposition alleles.) This indicates that even in healthy individuals the bioavailability of gluten proteins is low, which can be improved by feeding on these enzyme-fortified grains. It will also reduce how much must be eaten to get a similar amount of nutrition. As I mentioned previously, Triticum monococcum (popularly known as einkorn), is good for consumption by one group of patients, but the major difficulty is determining who can have it without causing damage to their intestines. Thus, we are continuously working toward obtaining wheat genotypes that will be safe for all celiac patients, not just for a sub-group of celiac patients. This will avoid problems with labeling and diagnosis. Scott Adams: If possible, I also just want to clarify my point #2, and get your reply to it. I believe that you said anything testing below 20ppm can be labeled "gluten-free" in the USA, but the new regulations are a bit more complicated (http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm363069.htm): An ingredient that is any type of wheat, rye, barley, or crossbreeds of these grains; An ingredient derived from these grains and that has not been processed to remove gluten; An ingredient derived from these grains and that has been processed to remove gluten, if it results in the food containing 20 or more parts per million (ppm) gluten. I guess you could argue that the genetic modification process has removed the gluten, but this would be a legal argument that certainly isn't obvious in the new laws. For example, it is my understanding that beers which contain barley and have used an enzyme to render them gluten-free cannot, at present, be labeled "gluten-free" under the new law, even though they test below 20 ppm. Sachin Rustgi: I agree with you on the issue of labeling under the new regulations, but as you said it could be argued that these new wheat strains (devoid of immunogenic prolamins) should not be counted with the immunogenic wheat varieties, and should be classified as a new market class of wheat. The additional support for this argument comes from the preliminary feeding trials performed on transgenic gluten sensitive mice, and advanced trials performed under the NIH guidelines on existing gluten sensitive monkeys, and on interested celiac patients. Hopefully, the argument, supported by strong evidence, will foster reconsideration of the present labeling regulations. Scott Adams: What are the chances that cross-pollination of your celiac-safe variety of wheat by normal unsafe wheat will occur, and cause a percentage of the celiac-safe crop to become unsafe? Sachin Rustgi: Wheat is a strictly self-pollinated plant with a natural out-crossing rate of less than 4% in cultivated varieties (in exceptional cases up to 6.05% of out-crossing was reported). Out-crossing occurs mainly in the late emerging wheat spikes, which contribute very little to the total seed count of a plant. Moreover, wheat pollens are relatively heavier in comparison with the other grass pollens, thus could travel to a maximum of 1 m distance from the pollen source, and under optimal field conditions (20C and 60% relative humidity) can survive up to one half hour after release from anthers. Thus, if the APHIS (Animal and Plant Health Inspection Service) recommendations about isolation distances are followed a contamination of ‘celiac-safe' wheat with the ‘immunogenic' wheat can easily be avoided. In addition, a positive correlation between the rate of out-crossing in wheat and the length of flowering period was documented. Thus, the celiac-safe wheat genotypes can be selected for early and synchronously flowering phenotype to further reduce the rate of out-crossing.
  20. Celiac.com 02/27/2006 - Gluten Intolerance Group (GIG) applauds McDonald’s for providing proof that their French fries are safe for persons with celiac disease and gluten intolerances, states Cynthia Kupper, RD, Executive Director of GIG. Kupper, who has worked with large corporate chain restaurants for many years to provide gluten-free menu options, states McDonald’s took the best action possible by having the fries tested by one of the leading independent laboratories in food allergens. McDonald’s has provided the reassurance those persons with celiac disease need, to feel confident they can eat the fries without getting sick. Outback Steak House was the first large restaurant chain Kupper worked with to develop gluten-free menus. “We definitely made some new friends!” stated Thomas C. Kempsey, Director of Culinary for Cheeseburger in Paradise, speaking of the gluten-free menu Kupper helped the chain launch in February. Cameron Mitchell’s Fish Market, Bone Fish Grill, Carrabba’s, Bugaboo Creek, and many others have worked with GIG to develop gluten-free menus. The program has been very successful for restaurants involved with GIG’s outreach project, states Kupper. The patrons are happy and the restaurants see a growing number of loyal customers. GIG promotes safe and healthy dining through education of restaurants and consumers. Many restaurants have developed gluten-free menu options. Some individual restaurants are part of a program GIG will soon manage called the Gluten-Free Restaurant Awareness Program (www.glutenfreerestaurants.org). Both this program and GIG’s corporate program have strict guidelines for inclusion. Many restaurants have the potential to meet the needs of persons with food sensitivities, however not all are willing to take the extra steps necessary to do so. Many people with celiac disease are afraid to eat away from home for fear of getting sick according to research. To know that restaurants offer gluten-free choices, verified by trusted sources is a big deal for these people. For people who travel, places like McDonalds and Outback become their safety nets and they will not eat anywhere else, states Kupper. Parents want their children to have options like other kids, so McDonald’s is a perfect fast food choice. Not all fast food restaurants use dedicated fryers and some use fries that are treated with wheat flour – an absolute ‘must avoid’ for celiacs. Unlike other acute allergies, such as peanut allergies, celiac disease is a chronic condition that can cause damage to the intestines, malabsorption and malnutrition by eating gluten (proteins found in wheat, rye, barley and hybrids of these grains). Celiac disease is a life-long disease that can be diagnosed at any age. The only treatment for the disease is the strict avoidance of gluten. Celiac disease affects nearly 3 million people in the US and 1:250 people worldwide, yet it is the most misdiagnosed common disorder today. The Gluten Intolerance Group, based in Seattle WA, is a national nonprofit organization providing support and education to persons with gluten intolerances in order to live healthy lives. GIG is the leading national organization for gluten intolerances with a dietitian on staff daily to work with consumers. Gluten Intolerance Group (GIG) works with restaurants to offer gluten-free dining options for persons with celiac disease.
  21. glutenfreegirlfriend

    Gluten Free and No Appetite?

    Does anyone else have issues with appetite and a gluten free diet? If so, what do you use to help yourself? Is there anything out there that helps with your appetite that is LEGAL? Please help!
  22. Celiac.com 09/25/2008 - Even after identifying yourself as having a wheat or gluten allergy and asking for a specially prepared meal, it is a common mistake to have a server deliver soup with crackers, or the entree with a side of Texas toast. I get frustrated just thinking about the number of times my salad has arrived with croutons. However, getting upset, or pointedly reminding the server can ruin the ambiance of the meal, as well as leave a bad impression with your dinner companions. It is helpful to remember that you are in the very small minority of their customers, and simply consider it an honest mistake. Do not remove the croutons, crackers, cheese, etc. and eat your contaminated food—SEND IT BACK TO THE KITCHEN—politely, please. State that you cannot eat what they have brought you, and repeat that you are allergic to the offending food. Use the opportunity to gently remind your server and educate them about gluten. Hopefully the next time they will be more conscientious. If you are wheat or gluten intolerant, and have the genetic component that leads to celiac disease, there is no going back to gluten. As your body heals, you may think that you will be able to cheat once in a while, and that your sensitivity to gluten will decrease once you are not getting "too much". In fact, the opposite seems to be true. Once the body begins to get rid of its toxic load, heal damaged tissues, and regain health, it becomes more sensitive to gluten. I see this over and over again in the clients I counsel, and in my cooking class students. You will know right away if you cheat, or if you are accidentally "glutened". Your body, fortunately or unfortunately, will tell you. It is important to learn techniques to sooth your symptoms as much as possible until recovery takes place. Symptoms of gluten exposure in a gluten-intolerant person can vary widely, but some commonly reported ones are abdominal discomfort, bloating, pain, swelling (sometimes extreme) and cramping, followed by diarrhea, or loose stools. For those with Dermatitis Herpetiformis (DH), even very minor exposure can provoke itching and a return of a healed or nearly healed rash. Others report headaches, or experience a sudden decrease in alertness and clarity of thought. Short-term treatment strategies for gluten exposure include taking an over-the-counter anti-histamine (check with your pharmacist for gluten ingredients), drinking nettle leaf tea (a natural anti-histamine), and using a warm castor oil pack over your upper or lower abdomen, wherever the pain and cramping are centered. Longer-term strategies include rebuilding your intestinal health through following an anti-inflammatory diet, taking supplements like L-Glutamine, coconut oil, fat-soluble vitamins A, E, D, and K, Calcium, Magnesium, B-Vitamins, Essential Fatty Acids (EFA's), and probiotics. Dr. Thomas O'Bryan, a nationally recognized speaker on celiac disease and gluten sensitivity, also recommends Carnitine, an amino acid, in the treatment of celiac/gluten intolerance. L-Carnitine helps in the absorption and transport of essential fatty acids into cells, and also helps to protect nerve membranes from free-radical damage. You may have good results with the tummy rescue smoothie recipe below, which I developed in response to a "gluten emergency" of my own. The healing properties of each ingredient are also listed. Puree in blender until smooth, and slightly thickened. It is most soothing when consumed while still warm from the hot tea Tummy Rescue Smoothie: 1 cup hot freshly brewed nettle leaf tea (anti-histamine, anti-spasmodic) ¼ cup Santa-Cruz pear juice (flavoring/sweetener - pears are the least allergenic of fruits) ¼ - ½ teaspoon whole fennel seed (reduces gas & bloating) 2 Tablespoons slippery elm powder (healing & soothing to mucous membranes and the gut) 1 Tablespoon flax seed oil (soothing, anti-inflammatory) ¼ - ½ cup rice milk (hypoallergenic, use to thin to desired consistency) This smoothie is best consumed in small sips over an hour or so. Magnesium also helps with pain and relaxes muscle spasms, so taking a little extra magnesium may be of benefit. For severe symptoms, drink the smoothie while reclining in bed, with a warm castor oil pack over the abdomen, covered by a heating pad set on low. Do not leave the pack in place for more than an hour. There is also an enzyme coming on the market that may help reduce some symptoms of gluten exposure, although this product is in no way meant to replace the gluten-free diet. Use it only for emergencies.
  23. Hello, Most of my life I have stomach issues. I have been on a rollercoaster for as long as I remember. In my 20s I almost died from dehydration and still no one discovered what caused the diarrhea and stomach issues. In my late 20's I started getting hives. Until I was 35 I had constant hives. Then that calmed and just kept red blotchy. Now I am in my 40s and the 2 years ago my joints started hurting progressively getting worst and just tired exhaustedly tired. The last Month I almost passed out and once at work. I ended up in the er. They think I have Pots -Postural Orthostatic Tachycardia Syndrome. Every time I would try to eat I would get sick with those symptoms of heart pounding like nuts and feeling like I would pass out. I was so nauseated and sick even the littlest amount of food was bringing it on... so I did not eat. I also had a problem keeping balance on walking like my legs felt like jello. Some days are worst then other and some are not so bad with the balance shaking. 1 week of not eating - just taking a centrum to keep up with water. Then I noticed something. Here I was starving myself-- AND I FELT THE BEST I EVER FELT IN MY LIFE!! My joints felt better! My energy was alright not 100 percent but alright. My aches felt better. My sore body felt better. So I posted on my facebook... I just don't get this how can I be STARVING myself and FEEL the best I felt in my entire life!! Someone said wow with all the things you been through it sounds like you have a problem with Gluten I bet it. So I read up on gluten and and celiacs. So I watched what I tried to eat to be no gluten. I started feeling better and the first week I could eat little. Then I could eat more--- all gluten free. I just email my doctor and he said it sounds like I had good questions for him and to make an apt to figure out what testing we need to do. I almost want to cry because all these years....all these freaking years!!! I am just crying not because I am said part because I am angry that we could not figure it out sooner and part because finally figuring it out. Dr apt 6.23.16 and I am just overwhelemed that I may get real help finally. I also have a cardiologist apt for the 28th because they are confirming the pots which they already believe it is. I have had a stress test already as well. Has anyone else been through it like this???? I had problems as a kid even ending up at 7 in an ambulance for pain in my stomach.... and they blamed it on a kid who kicked me a week before said I was probably bruised internally. Seriously!!! Ugh I will update but has anyone had any of this for soooo long with no one knowing what it was? I pray this is finally it.... because I know keeping off the gluten has made me feel so much better.. My joints and energy and everything is getting better slowly!!! Do you know what testing will be done? I had 4 colonoscopies trying to figure crap out and why didn't they figure it out with them- other then polyups???
  24. Celiac.com 09/08/2010 - Children with celiac disease face high risks for bone disease without supplemental vitamins, according to a recent study by scientists at the Canada's University of Alberta. The study shows that without certain crucial vitamins, children with celiac disease face a greater risk for weak bones and osteoporosis. For the study, the research team evaluated 43 children and teens from three to 18 years of age with clinically proven celiac disease. They found that the children commonly showed low bone density, most likely from poor intake and absorption of vitamins and minerals. According to the results, the children with celiac disease got less than half of their recommended daily intake of Vitamin K. They also showed low Vitamin D levels, which can be normalized by eating fortified dairy products by regular sun exposure. That means kids with celiac disease need more of bone-promoting vitamins such as K and D as part of their regular nutrition, says Diana Mager who is professor of agricultural, food and nutritional science, and co-leader the research team together with Justine Turner, pediatric gastroenterologist in the Department of Pediatrics at the U of A. "Children with celiac disease are at risk for poor bone health, but by adding vitamins K and D to their diets, it can help reduce the risk of fractures and osteoporosis," Mager said. Mager also recommends that children with celiac disease get outside as part of their regular play activity to build bone strength and boost Vitamin D levels. "Enjoying activities such as walking and running outdoors when there is more sunshine is a great way to contribute to healthy bones," Mager said. Source: University of Alberta
  25. Celiac.com 06/11/2016 - It's never become so clear to me how much our health and quality of life are dependent upon the food we eat since seeing myself, my family and more than my share of celiac friends and acquaintances make the transition to grain-free from gluten-free. This is evident in witnessing such positive results just from eating a biologically appropriate diet, the paleo diet, which is grain-free and thus gluten-free. Some have this simple diet termed as the caveman diet, the paleolithic diet and what-have you, but in essence it has been deemed "man's original" diet. In my approaches to the topics of the paleo diet, I discovered the affects this diet has on man's health as a low glycemic alternative to man's diet, aiding ills and physical betterment through glycemic control. In my research and through working with many professionals over the years I've explored a variety of diet, health and lifestyle regimens and looked in depth into the prevailing topic of non-responsive celiacs, also known as refractory celiac disease. The paleo gluten-free diet is based on the premise that humans do best eating the foods our ancestors ate prior to the advent of agriculture and animal husbandry around 10,000 B.C. This proven theory is that modern humans do best on paleolithic nutrition because human genetics have largely remained the same since the pre-agricultural era, and thus our genetic makeup is best suited to the ancestral human diet—no grains at all. Taking our current bodies and then applying how man ate back in the day has been having profound effects on the general health and well-being within research and study results. According to research, pre-agricultural humans were free of the diseases of the civilized world such as cardiovascular disease, cancer, obesity, and autoimmune diseases. Modern studies, including clinical studies, have shown as well that eating paleo gluten-free can help or reduce risks of a variety of serious health conditions. This includes issues associated with high insulin and blood sugar levels, which can lead to a variety of diseases and health conditions such as hypertension, high cholesterol levels, obesity, type 2 diabetes and gout. That's because many foods on the paleo gluten-free diet are low-glycemic, which is evidenced in the ills they are void of, which we now classify as "normal" or aging, or an aging "disease". Grains are biologically similar to table sugar, causing an unhealthy spike in insulin upon consumption. Most of the carbohydrates consumed on the paleo gluten-free diet, consisting of a variety of vegetables, fruits, proteins and healthy fats are low-glycemic. Honey, maple syrups, etc. are currently debatable and this is another topic all together. What's the big deal about the Glycemic Index? According to studies, a low-glycemic diet can help with obesity, type 2 diabetes, polycystic ovarian syndrome, cardiovascular disease, as well as other conditions such as Alzheimer's, depression and non-responsive celiac disease. Some of the benefits of low glycemic eating include: improved weight loss, decreased hypoglycemia, steadier moods, mental clarity, sleep improvement, and reduced food cravings, which means less binge eating. This also means less overweight children with early onset diabetes, which is truly a rapidly growing concern. It is to our benefit that we all take a good look at our diets and the effects that the carbohydrate intake of the currently prevailing "standard" gluten-free diet has on our bodies. Let's determine if what we are eating could be causing health conditions that could possibly be reversed or avoided. Should we be willing to entertain the idea of change? The change could be as simple as taking a sincere look at man's original diet, the diet we were biologically designed to live on. Could our original diet of no grains, low carbohydrates and high "good" fats be a door we need to open, step through with our eyes wide open and be willing to learn about? I truly believe this topic answers many mysteries and unresolved diagnoses.
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