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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    SKIN CONTAMINATION AND THE CELIAC


    Yvonne (Vonnie) Mostat


    • Journal of Gluten Sensitivity Summer 2012 Issue


    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.


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    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


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    Guest Geri Manus

    Posted

    I don't usually read the newsletter, but I've been having issues lately even though I thought I was monitoring myself. I have DH, which was dormant for the last nine years, and this past year reared its very ugly head. This article was an eye-opener and I will look up the sites suggested. I will also check my cosmetics, etc., to make sure I´m not further contaminating myself. Thanks for the information. It's also nice to know I'm not alone. I went to one dermatologist who told me I was the second person he's ever treated for this. I left and went to an expert at a teaching hospital who now monitors my meds and intakes. Thanks again. I will keep reading!

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    Kristen Campbell
    Gluten intolerance often presents itself in ways unexpected, including several common skin conditions.  Ranging in severity from dermatitis herpetiformis to dry skin, avoiding gluten may have more to do with your plaguing skin concerns than you imagined.
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    Dermatitits Herpetiformis—This painful, blistery condition can be very stressful, especially when misdiagnosed.  An inflamed, itchy rash, dermatitis herpetiformis begins as tiny white filled blisters or red spots around hair follicles.  Trying to hide or disguise DH, as well as trying to treat it when misdiagnosed can be incredibly stressful for a person. Eczema—Eating a gluten-free diet is becoming an increasingly popular mode of treatment for eczema.  Those who are gluten intolerant also tend to have more advanced psoriasis.Psoriasis—Like eczema, psoriasis has in many cases shown improvement when the person is put on a gluten free diet.  In Scott Adams’ 2004 article, he also mentioned that psoriasis in those with celiac tends to be more severe. Acne—Links between celiac and malabsorption, as well as hormonal upset can contribute to a greater production of acne.  Many birth control pills boast promises of clearer skin, their method is through hormone manipulation.  Because many who suffer from gluten intolerance also experience a disruption of normal hormone function, this disharmony can lead to problems with acne.  Dry Skin—Also correlated to malabsorption, dry skin is a very common complaint amongst those with celiac.  But this condition is one that many people see even after the prescribed treatment of a gluten free diet.  Why?  Vitamin E rich grains are vital to maintaining skin harmony, but since many who are gluten intolerant begin avoiding grains completely—even those grains that are gluten-free, getting that important Vitamin E in their diets can become a challenge.


    Jefferson Adams
    Celiac.com 12/29/2011 - About one in 100 people in America has celiac disease, while about one in four of those will develop dermatitis herpetiformis Duhring, which occurs when celiac disease manifests cutaneously, in the skin. Dermatitis herpetiformis Duhring is uncommon in children, with only 5% of cases appearing in children younger than 7 years. Most often, it presents in people over forty.
    Making a proper clinical diagnosis of dermatitis herpetiformis Duhring, also known as Duhring’s disease, is challenging, and often requires the help of skin biopsy and direct immunofluorescence.
    To do this, clinicians should look for antibodies against gliadin, endomysium, and transglutaminase, said Dr. Magdalene A. Dohil, of the University of California, San Diego, at a seminar sponsored by Skin Disease Education Foundation (SDEF).
    The fact that manifestations of celiac disease in the mucous and skin may point to Duhring's disease was one of the more important aspects of Dr. Dohil's discussion, for people with celiac disease, and those treating them.
    Dr. Dohil noted that, at some point during the course of their disease, more than seven in ten people (74%) with celiac disease will have some type of skin manifestation. Most often, this skin manifestation occurs in the form of xerosis, which often triggers pruritus. Mucosal manifestations occur in 27% of patients, especially in patients with longer history of celiac disease.
    Dr. Dohil pointed out numerous diseases, disorders, syndromes, and structural epithelial defects with clear connections between skin and gut. For example, 60%-82% people with asymptomatic inflammatory bowel disease present with mucocutaneous findings that include skin tags, fistulas, fissures, or abscesses in the perianal and genital areas. In 25%-30% of cases, these will precede GI complaints. Dr. Dohil said.
    Overall, 6%-20% of all patients with inflammatory bowel disease develop oral lesions, but up to 80% of pediatric cases with Crohn’s disease and 41% with ulcerative colitis develop such lesions.
    Source:

    http://www.skinandallergynews.com/news/medical-dermatology/single-article/diseases-of-the-gut-may-present-cutaneously/57197f4ef7.html

    Dr. Rodney Ford M.D.
    Celiac.com 03/15/2016 - "Creating health comes down to the food we eat and how we choose to live our lives." – Dr. Terry Wahls
    Lots of people find it hard to believe that such a common food as wheat/gluten could possibly be implicated in causing skin diseases. They say something like this: "Everyone eats wheat, but not everyone gets skin troubles—so it can't be wheat!" This logic is flawed. I have written this book so that you can read all of the evidence about gluten-related skin disease in one place. "Cutaneous gluten sensitivity" is one of the new terms applied to the group of gluten-related skin diseases.
    Max belongs to this leg in the photo. He is very itchy and sore. He is 18-years old and not getting any better—in fact he has been getting worse. He came to me seeking help. Mum wrote,
    "Max has been suffering from debilitating dermatitis over his whole body for the last 3 years. He is withdrawn, self-conscious, covered with sores, and feels he will never get better. Unfortunately, the creams he is putting on just seem to irritate him."
    So, I am investigating him for gluten-related eczema. It will be a relief for him if the tests come out positive for gluten. What should be the strategy to get him better?
    I don't want him to go through the rest of his life like Elizabeth Whitesell, from the Gluten Zero Facebook page, who explains:
    "I was frantic with itching before my celiac diagnosis. The dermatologists never addressed the possibility of celiac, just gave me new treatments for my itching. I cannot name all of the creams, oils, pills and ointments I used, along with a blue-light treatment. Steroid shots, creams and pills were a major part of my treatment." "I received some temporary relief and never traveled without my creams. Itching on my hands was so fierce that I carried a frozen ice block (the kind used in coolers) in my purse. When we were at a public event, I gripped my hands around the ice to ward off a noisy itching attack. Ice was my godsend to keep the itching from following its neurological path. All of my blouses had blood dot stains from clawing my upper arms like I was an ape when into full-time mode." "My best treatment was freezing 2-liter bottles of water and holding them between my knees as I laid down to go to sleep. If I could fall asleep before the freaking stage began, I was on a roll. More frozen bottles were kept in a cooler by my bed for when the thaw came and I was too tired to walk downstairs to replace them." "What a saint of a husband I had. Once I went gluten-free, so many changes came for the better. I did not suddenly notice the absence of itching but, one day, looked back and realized I was not traveling and sleeping with frozen bottles anymore. I hope dermatologists are more informed now." Skin Diseases Associated with Celiac Disease
    Gluten is known to cause skin disease. Gluten can definitely cause itchy skin. Collectively, these skin-diseases provoked/triggered/caused by gluten can be called "cutaneous gluten sensitivity". This is an umbrella term which includes:
    Dermatitis Herpetiformis (DH); Celiac associated skin diseases; Non-celiac associated skin diseases. So what is the evidence?
    1) Dermatitis Herpetiformis: To summarise the previous chapter, the classic skin complaint is dermatitis herpetiformis. It usually affects the elbows, knees, buttocks, scalp, and back. It begins as little bumps that then change into little blisters. People say that they are driven mad by the itching. It is caused by an immune reaction to gluten in the skin. Microscopic clumps of immune-complexes get deposited just under the skin. This creates the very itchy rash. These tiny particles of immunoglobulins can take years to clear up once you start on a gluten-free diet. It is reported that it can take up to ten years before you make a full recovery.
    2) Celiac Associated Skin Diseases: Marzia Caproni and co-workers have detailed the skin diseases that have so far been associated with celiac disease (and perhaps by implication, with gluten).
    In their paper, "Celiac Disease and Dermatologic Manifestations: Many Skin Clues to Unfold Gluten-Sensitive Enteropathy" they include common skin complaints that most people do not associate with gluten-illness:
    Dermatitis Herpetiformis Psoriasis Alopecia Areata Chronic Urticaria Hereditary Angioneurotic Edema Cutaneous Vasculitis Atopic Dermatitis Eczema Vitiligo They also remind us that enamel defects, delayed eruption, recurrent aphthous ulcers, cheilitis, and atrophic glossitis are gluten-associate conditions and that "the diagnosis of celiac disease can sometimes be made from a smile!"
    Their important message is that anyone with any of these conditions should be investigated for celiac disease.
    3) Non-celiac Associated Skin Diseases
    The skin is a frequent target organ in gluten-sensitivity. The skin, hair and teeth can all be disturbed by gluten. However, eczema is a much more common manifestation of gluten-sensitivity.
    Humbert and his dermatology colleagues (Gluten intolerance and skin diseases, 2006) wrote this about gluten and skin disease:
    "Gluten sensitivity, with or without celiac disease symptoms and intestinal pathology, has been suggested as a potentially treatable cause of various diseases. There have been numerous reports linking celiac disease with several skin conditions. Dermatitis herpetiformis is actually a skin manifestation of celiac disease. Autoimmune diseases, allergic diseases, psoriasis and miscellaneous diseases have also been described with gluten intolerance." "Dermatologists should be familiar with the appraisal of gluten sensitive enteropathy and should be able to search for an underlying gluten intolerance. Serological screening by means of anti-gliadin, anti-endomysial and tissue-transglutaminase antibodies should be performed. Gluten intolerance gives rise to a variety of dermatological manifestations which may benefit from a gluten-free diet." This is an important statement.
    In 2010, Korossy reported a skin eruption that he called "gluten-sensitive dermatitis" which he says is clinically indistinguishable from dermatitis herpetiformis but lacks the IgA connection. (Non-dermatitis herpetiformis gluten-sensitive dermatitis: a personal account of an unrecognized entity, Korossy, 2010).
    Cutaneous Gluten Sensitivity
    Bonciolini et al (2015) have made a study of the skin manifestations of people with Non-Celiac Gluten Sensitivity (NCGS) Cutaneous Manifestations of Non-Celiac Gluten Sensitivity: Clinical Histological and Immuno-pathological Features, Bonciolini et al 2015
    They have adopted the term 'cutaneous gluten sensitivity'. They describe 17 consecutive patients affected by NCGS. They had excluded celiac disease and wheat allergy. They said:
    "The skin lesions observed were similar both to eczema and psoriasis and did not show a specific histological pattern. Furthermore, no serological marker was useful to identify these patients. The only data common to most of these patients affected by NCGS associated to non-specific skin manifestations are: the itching; the presence of C3 at the dermoepidermal junction; a rapid resolution of lesions when adopting the gluten free diet. Therefore, dermatologists must be familiar with the cutaneous manifestations and symptoms of gastrointestinal disorders. An appropriate understanding, work-up, consultation and management will help to identify the important cutaneous–gastrointestinal connection and ensuring that this important gastroenterological disease in patients with skin manifestations is not ignored.
    Finally, we suggest an accurate follow-up of all patients who report intense itching and gastrointestinal disorders, even when histology and morphology of the skin lesions do not identify a specific skin disease.
    We also suggest the adoption of gluten-free diet for at least three months assessing any positive effects."
    A Family Affected by Cutaneous Gluten Sensitivity
    Katrina Ojakaar writes this about the severe skin problems in her family that were eventually shown to be related to gluten-harm: "I had terrible eczema on my legs as a child. As an adult I had recurrent eczema on my eyelids and hands in addition to severe dry, itchy skin on my scalp, back, and legs. I also developed rosacea on my face that was treated unsuccessfully with antibiotics and topical ointments. At the age of 44, I had a lab test that showed gluten was making me sick. I immediately stopped eating food that contained gluten and within weeks watched my skin transform. I no longer have raw eczema patches or dry skin; and my rosacea has disappeared." "My daughter, Lila, had horrific diaper rash as an infant and nothing seemed to heal her sore bottom. Even as she grew out of diapers, her bottom was always irritated. Lila's skin was also very dry and irritated. Lotions and even plain bath water caused a sting. But when Lila stopped eating gluten, her skin simply healed. She now has smooth, soft, and moist skin without irritation and enjoys a relaxing bath." "My mother suffered from psoriasis on her legs and scalp until she stopped eating gluten at the age of 72. She is now 75, and the psoriasis has disappeared. Her skin is healthy, and she doesn't eat gluten, dairy, or oats." My father had rosacea on his face and was diagnosed with the autoimmune disease called lichen planus about 12 years ago. He had raw, bleeding sores on his scalp. And his fingernails and toenails disintegrated where he was left with only tender skin. Three years ago my dad stopped eating gluten, and two months later, his fingernails started to grow back. He now has a thin narrow layer of nail at the age of 80. The lesions related to his lichen planus disease on his scalp are gone. And, my father's rosacea, like mine, also healed when he stopped eating gluten." Keratosis Pilaris
    Keratosis pilaris, or sometimes called 'chicken skin' is blamed on gluten by many people. It is very common, occurring in about 10% of people, and there seems to be a hereditary nature to it. It tends to lessen with age, being prominent in toddlers. Any gluten connection remains speculative.
    Anne Luther writes:
    "One of the many pleasant surprises I had when I stopped eating gluten was the disappearance of three different skin rashes. There were non-itchy bumps on my back and arms, non-itchy red bumps on the soles of my feet and a very itchy rash on my legs behind my knees. None of these were ever diagnosed by a doctor but they all disappeared after I had totally eliminated gluten from my life." Keratosis pilaris is skin condition characterized by rough patches of skin caused by small, acne-like bumps. It is found mostly on the upper arms, upper thighs, and cheeks. It can feel a bit like sandpaper or goose-flesh. These little bumps are usually white, but can be red. They do not hurt. Sometimes they can feel a bit itchy.
    Keratosis pilaris seems to be caused by a build-up of keratin, the protein that helps create the protective skin barrier. Once keratin has formed into a hard plug at the opening of the hair follicle, this can block the oil and sweat glands. Consequently, these substances cannot escape out onto the skin, and results in these patches of rough, bumpy skin.
    I see a lot of keratosis pilaris in my Clinic. The gluten connection not clear, but many parents report its disappearance on a gluten-free diet.
    What happened to Max?
    Remember Max's legs at the beginning of this Chapter? Well it turned out that Max had two copies of the HLA gene DQ2 which gives him a 1-in-7 chance of developing celiac disease. It also increases his likelihood of having gluten sensitivity. However his blood tests for gluten (AGA) and celiac disease (tTG) were negative. But he did have evidence of a wheat allergy from his EAST tests. His total IgE levels were extremely high as well (over 4000), showing his heightened allergic status.
    So he has now embarked on a trial of a gluten-free diet. Mum says, "I feel that we are starting to get to the bottom of it now." It will be another 6 months before we know his results of his gluten-free diet. It can take a long time to heal.
    This was an excerpt from Dr Rodney Ford's latest eBook: "Dermatitis Eczema: Gluten Wheat – Solving the Eczema Puzzle." Available at: http://www.GlutenEczema.com

    Jean Duane
    Celiac.com 09/13/2016 - Six times from 2003 – 2005, I had a mysterious full-bodied, itchy, blistery rash that landed me in the emergency room the first time, where seven doctors shook their heads. The ER physicians agreed that it was a "systemic chemical reaction" and tried to identify what I could have been exposed to. A dairy allergy was ruled out immediately since I have been completely dairy-free for twenty years. For the next three years, between hiding from the world for the ten days of intense itching and for the six weeks it took my skin to heal after an outbreak, I saw numerous dermatologists, internists, gastroenterologists, allergists and chiropractors. No one could figure out what was causing this miserable rash.
    I finally met the "best diagnostician" according to Denver's 5280 Magazine who told me he would figure out what was causing my plight, but that it wouldn't be fun. At that point, I was willing to take any test to identify what my enemy was. I endured ninety-eight needle sticks (who's counting?) eight skin biopsies, invasive scopes and tests for allergies, rheumatoid arthritis, diabetes, thyroid disease and a host of other procedures. The skin biopsies erroneously concluded that I had scabies. Scabies are biting mites that leave bumps on the skin. It couldn't have been mites, because my husband, who lives in the same environment, didn't have a bump on his body.
    There was only one test that I did not pass – elevated levels of IgG antibodies in my blood. My doctor suggested that the rash could be correlated with gluten consumption and recommended that I try a gluten free diet. After being vigilant for several months, five out of seven long-term chronic complaints, including the rash, gradually went away.
    Here's my understanding of the DH lifecycle. An intestine that cannot break down the protein gluten leaks it out of the intestine and into the bloodstream. The blood sees this as a foreign protein and over-produces the immunoglobulin G to attack it. The antibodies build up, and purge out through the skin causing the rash. Completely avoiding gluten eliminates the antibody buildup, and the rash. One clue that might have streamlined my diagnosis is the knowledge that the DH rash is symmetrical. If it appears on one elbow, it will appear on the other, etc. In my case, it appeared on both sides of my entire body from the neck down.
    Please understand, I am not a doctor and the following is not to be considered medical advice. I am sharing this to pass along a few things I've learned from personal experience, research and lectures on the subject with the hope of helping others who suffer from a chronic, pervasive, itchy rash.
    Initial Testing
    Since I had the eight skin biopsies, I've learned that immunofluroescent biopsies should have been taken of the healthy skin near the rash rather than of the actual bumps. I was never given this test.
    After all those tests, the elevated IgG was the only indication that gluten is the culprit. I endured what was considered the "gold standard" for diagnosing celiac disease, the upper GI scoping, and my gastroenterologist did not find any damage. I have since learned that the upper GI scoping is no longer thought to be the "gold standard" diagnostic process by many celiac experts because it is too random. If the doctor doesn't biopsy the intestines in exactly the right place, you may be deemed to be celiac-free when you actually have considerable intestinal damage several inches away from the biopsy site. Furthermore, people with DH may or may not experience damage to their small intestine. A study done in 2010 found that 67 percent of the time people with DH only have elevated IgG-TGA levels (1).
    My doctor divulged that there simply are not yet 100 percent conclusive tests for celiac disease. He said that the best way to be sure of the diagnosis is to observe that the chronic symptoms disappear over time by vigilantly following a gluten free diet.
    Residual Rashes
    Residual rashes can reappear for up to five years even though the person is following a gluten free diet. The accumulated antibodies purge in a histamine response (the rash) periodically through the skin. Horrible as an outbreak is, the rash is actually how the body cleanses itself of the antibodies. The good news is, rashes diminish in time with strict adherence to a gluten free diet.
    Ongoing Testing
    I've learned that the best way to monitor the healing process is to have the IgG antibodies tested once a year until they are in the normal range. The number should decline each year, which implies compliance to the gluten free diet and that residual rashes will diminish. Mine took several years to finally reach the normal range. Having IgGs in the normal range does not mean that I can ever go back to eating gluten. DH is a life-long condition controlled by a gluten-free, and often, a dairy-free diet. Some studies talk about a spontaneous remission. This is very rare.
    Other Triggers
    People who have a propensity to develop rashes need to be aware of other triggers.
    Iodine triggers the rash in people with DH. Seaweed, shellfish, especially shrimp and lobster should be avoided. Sushi wrapped in Nori seaweed has caused me to have an outbreak before. Watch out for thyroid medicine and water filters because both can contain iodine. Sunburns can cause rashes. If your skin is sensitive enough to get a rash, chances are, sun will irritate it and could trigger an outbreak. Stay in the shade, wear translucent zinc oxide sunscreen and avoid too much exposure. An overgrowth of Candida (yeast) can cause an outbreak. Candida is naturally present in the body. To avert an overgrowth, eliminate simple sugars from the diet. According to a study done at Rice University, 70 percent of the population have an overgrowth of Candida somewhere in their body(2) due to over-exposure to antibiotics, steroids and hormones. Women who are "estrogen dominant" may not be producing progesterone. This can happen during perimenopause and in menopause. According to the book What Your Doctor May Not Tell You About Menopause by John R. Lee and Virginia Hawkins(3), estrogen dominance causes autoimmune and histamine reactions in some people. This could be the reason that women who have eaten gluten for years without symptoms are suddenly are plagued when they are in their 40's or 50's. Pharmaceuticals can trigger rashes in people with DH. If there is a choice of two drugs and one says a side effect may be a rash, and a similar drug doesn't, opt for the one that doesn't say "rash" for a side effect. Inadvertent gluten consumption can also cause the rash. Gluten is in nearly every processed food, and in many cosmetics and drugs. Some mushrooms are even grown on gluten! Transglutaminase enzymes are used to revive aging fish and meats – to extend their shelf life and to make them look appetizing. Grocers do not have to declare that they add these enzymes because they are naturally occurring in the human body. Dr. Peter Green mentioned at a Gluten Intolerance Group conference that people with celiac disease develop antibodies to tissue transglutaminase, and that the addition of those enzymes may be causing people who are already sensitive to get sicker. The point is that even foods that are supposedly gluten free can contain small amounts of it. To be safe, test products with ELISA test strips. ELISA test strips are available at http://www.elisa-tek.com/ez-gluten/. Since these strips are so expensive, this is also a website for everyone who uses them to post their results. I have learned a lot by reading this forum. Day-to-Day Life
    The longer I have been gluten free, the less tolerant my body has become. I've heard this anecdotally from others following the gluten-free diet. My DH is so severe, I react to even the most minor infractions. It makes eating out very difficult because cross-contamination is common and waiters are not always aware. I have a little test for waiters to decide whether to trust them to bring me a ‘safe' meal. I order a club soda with lemon before I order food. If the soda comes with lime, I know this waiter is not listening, and will be more likely to bring me something that could contain gluten. In restaurants that flunk my club soda test, I play it safe and order salad, a fruit plate or steamed vegetables.
    I've been to restaurants that tout a gluten free menu, only to be presented with a laminated disclaimer saying they are not liable for cross-contamination or inadvertent gluten after I order. How can anyone enjoy a meal with that kind of disclaimer? Not to mention the disruption of the conversation with your meal-mate when presented with a disclaimer card. It can be a little embarrassing!
    The most frustrating aspect of living with this is when accidental infractions occur. In November 2011, I wasn't feeling very well, so I took an aspirin and went to bed. Ten days later, the rash started appearing. It was a very bad rash, and I had to wear gloves to cover my hands that had doubled in size. I could not figure out what I had consumed that had gluten in it. My home is gluten free! I thought perhaps a product that I habitually used changed ingredients, so I read all the ingredients of everything in my house. Using the ELISA test strips, I tested 44 different products – foods, pharmaceuticals, over-the-counter drugs, cosmetics – everything that came in contact with my skin, or that I ate. Nothing I tested contained gluten. Then I remembered taking the aspirin. I tested it, and it contained gluten! I read the ingredients, the label said "Inactive ingredient: starch." It did not say what kind of starch. This happens in binders in pharmaceuticals too. The ingredients of pharmaceuticals will say "starch #3," and further investigation reveals this can alternate between wheat, tapioca, corn or potato. This means every time a prescription is refilled, it must be tested to be sure that particular batch wasn't made with wheat starch.
    I was in a car wreck and had to be taken to the emergency room. My sternum was broken, and I needed pain medication. The nurse offered me a pill and I asked if they would please make sure that it was gluten free. The nurse said, "pharmaceuticals are gluten free." (I've had pharmacists tell me this too – but as mentioned above, it is not true!) I said, "The reaction I get from consuming gluten is worse than the pain of this broken bone. Would you mind checking?" The nurse came back 30 minutes later and told me the pill did, indeed contain gluten. I went home in the middle of the night without any pain medication. I found a website the next morning that lists all gluten free pharmaceuticals, and asked my doctor to call in the specific brand of pain medication. The website is http://www.glutenfreedrugs.com. I have learned to keep a bottle on hand at home, and when I travel in case something like that ever happens again.
    I really wanted to eat the gluten free oats, so in 2009, I decided to go completely grain free for three months to cleanse myself for the "oat challenge." Then I made some oatmeal cookies with the gluten free oats. I took one bite, and waited ten days. Sure enough, the rash appeared on my legs. Through this experiment, I learned that I am not tolerant of even some "gluten free" foods.
    Through my studies of alternative diets and trying to discover the optimal way to eat to improve health, I have learned that a diet centered on eating vegetables, fruits, beans and some nuts and seeds improve the autoimmune system. Once the immune system is restored, (after strict adherence for several years), I've been told that it may be possible to undergo gluten desensitization under doctor's supervision. Locating a credible doctor to do this may be tricky, and deliberately exposing myself to gluten would take a lot of courage. However, I am considering this down the road with the hope that if I am inadvertently exposed to tiny amounts of gluten, I won't suffer through another rash.
    Since my reaction is so severe, I asked my doctor to write an undated letter on his letterhead "To Whom It May Concern" that states my reaction to gluten. I take this with me whenever I travel, just in case I was ever hospitalized, I could show the staff a letter from a bona fide medical doctor stating the severity of my situation. Without a letter, I am not sure if anyone would adhere to the strict gluten free guidelines I need to follow.
    Rash Remedies
    In those dismal three years before I was diagnosed, I was given mega doses of steroids, antibiotics, antihistamines, countless prescription creams, gels, histamine blocks, anti-viral drugs, anti-fungals and offered Dapsone. Since it took years to diagnose, well-meaning doctors offered a smattering of drugs to see what might work.
    Most of the drugs listed above were not the right medicine for DH. Steroids proved ineffective. Antivirals and antifungals did not work either. Dapsone is commonly given to people with DH who are not able to adhere to a gluten free diet. It is a strong drug originally given to lepers and has severe side effects. I'd rather live the gluten free lifestyle than take Dapsone.
    Once diagnosed, the two drugs that worked for me to ease symptoms for outbreaks were Zantac and liquid Hydroxizine. I am told that Zantac is a histamine block. It helped to reduce the number of itching days from ten to eight. I was also told to take it as precaution, if I felt I had inadvertently eaten gluten to thwart off an outbreak. I took the liquid hydroxizine around 4:00 o'clock in the afternoon when the histamines are highest, to ease the itching through the night. An un-exotic over-the-counter remedy that works is the clear calamine lotion from Walgreen's. There were days that I dreamed of taking a bath in that wonderful stuff!
    Another remedy recommended by a DH friend is a product made by Bayer called Domeboro Astringent Solution. It is a powder that is mixed with water and applied with a cloth to the affected area. It is said to give relief from the itching for several hours.
    Fluocinonide gel .05 percent is another remedy I have heard helps with the extreme itching. Fortunately, I have not had an outbreak since I learned about this remedy.
    Ever Onward
    Though my doctor recommended the gluten free diet, he didn't tell me how to do it, and I found there was a lot to learn! Luckily, during that time in the midst of outbreaks, I was attending cooking school. The school was not gluten free, but I took all of the methods and lessons home and converted everything I learned to be allergy free. The diagnosis and certification from the school launched me on an epicurean adventure and changed the course of my life. I started the Alternative Cook to help others who want to eat safe, delicious foods.
    If you are suffering with an incredibly itchy, pervasive rash, or know someone who is, consider that gluten could be the offender. Celiac disease is much more prevalent in this country than once thought. If you need moral support with DH, I'd love to hear from you.
    Sources:
    Dahlbom, Ingrid, Korponay-Szabo, Ilma R, Kovacs, Judit B, Szalai, Zsuzsana, Maki, Markku, Hansson, Tony. "Prediction of Clinical and Mucosal Severity of Coeliac Disease and Dermatitis Herpetiformus by Quantification of IgA/IgG Serum Antibodies to Tissue Transglutaminase." Journal of Pediatric Gastroenterology and Nutrition. Vol. 50(2), February 2010, P 140-146. "Biologists ID Defense Mechanism of Leading Fungal Pathogen. Psych Central. June 25, 2004. http://psychcentral.com/news/archives/2004-06/ru-bid062504.html. Lee, John R., Hawkins, Virginia. What Your Doctor May Not Tell You About Menopause. Mass Market Paperback. September, 2004.

    Yvonne (Vonnie) Mostat
    Celiac.com 03/02/2018 - When I was diagnosed as having celiac disease with severe dermatitis herpetiformis (DH) I was told that the diet was difficult to follow and I would have to be vigilant or Dapsone would not relieve the itching. I suffered abdominal pain, outbreaks of sores, anaemia, and, (big swallow) the horrible bowel disorders. I came out of the dermatologist's office with a prescription for Dapsone to treat the attack of sores on my scalp, on my arms and thighs, along with a slip of paper referring me to the dietician at our local hospital. But that was years ago. My journey has been an ongoing trial of trial and error.
    I was just discharged from hospital again, my third occasion in ICU within the past year. I have been told I am the only person in Langley who can wear that crown, the one of having Methemoglobinemia. {lucky me!}
    This could happen to any celiac with dermatitis herpetiformis who takes Dapsone. And anyone regularly eating packaged meats or bacon, for instance, along with having Zylocaine injections, is at significant risk of methemoglobinemia as well. A person with celiac disease may or may not have dermatitis herpetiformis. Many celiacs go their entire lives without a DH spot on their bodies {you Lucky people}.
    I have learned a lot in this past two weeks, both while hospitalized and from subsequent research, about the reasons it happened and the dangers of it happening to me again. I can never have more than one Dapsone again and I must now have methemoglobinemia tests done every six weeks. It is likely that they cannot use Methylene Blue to treat me again, unless I am at a critical point, because of the danger of the poison still being in my system.
    **A little lesson here on methemoglobinemia:
    Hemoglobin is the molecule in red blood cells that distributes oxygen to the body.
    Methhemoglobinemia can either be inherited or acquired. It is a blood disorder in which an abnormal amount of methemoglobin, a form of hemoglobin, is produced. Methemoglobin cannot release oxygen.
    There are two forms of Methemoglobinemia. The acquired form is caused by exposure to some chemicals and/or drugs and is thought to be more common than those that are inherited.
    Chemicals and drugs that trigger methhemoglobinemia include:
    Anaesthetics such as benzocaine and Xylocaine Benzene Certain antibiotics {including Dapsone and chloroquine} Moi! Nitrites {used as additives to prevent meat from spoiling)!! There are two sub-groups of inherited methemoglobinemia, type 1 and type 2.
    The symptoms of acquired methemoglobinemia include:
    bluish coloring of the skin headache fatigue I did not get "bluish coloring of the skin", even though I was hospitalized on three occasions with this condition and was asked about it repeatedly. I did get full frontal, severe headaches, and I did experience breathlessness when climbing stairs. I had to stop at the top of our the stairs in our home to catch my breath. My most recent admission to the Emergency Department was after such an experience. I was really out of breath, had chest pain, and my headache was so severe that I told my husband that I thought that methemoglobinemia was coming back again.
    I made the mistake of following a physician's instructions - some don't seem to know that this condition can become critical.
    The admissions last year were because I had two of the diagnostic criteria for Type II methemoglobinemia. I had a trapped nerve in my neck and my husband had been trained to give me Zylocaine injections to alleviate severe stabbing pains just above my right eyebrow. (The nerve travels over the head to just above the eye.)
    I had been told that when I was in the throes of a dermatitis herpetiformis outbreak I could go 5 - 4 - 3 - 2 - 1 with Dapsone and Prednisone. On the first day I took 5 tablets, the second day 4 tablets, and so on. If the spots kept re-occurring then I was to follow the same procedure once more.
    When I was discharged last year I was not told to change that protocol. In February, I found myself inundated with dermatitis herpetiformis spots all over the back of my head, backs of my arms and shins. I was conservative in my approach to Dapsone and took only Three Dapsone tablets on two successive days.
    This set me on the path to another hospital admission. I could not climb our stairs without leg pains and becoming breathless. I had frontal headaches and just "did not feel well".
    On one of my last admissions to the intensive care unit, my methemoglobinemia was 29 and the Internist treating me said that if I had sat at home with my oxygen bottle for another week my methemoglobinemia scale could have climbed to 35 which usually means death.
    What to do if you develop the same symptoms: Call your health care provider or emergency services (911) immediately if you have severe shortness of breath and you have previously experienced methemoglobinemia.
    Prevention: Genetic counseling is recommended for couples with a family history of methemoglobinemia who are considering having children.
    After this most recent outbreak of DH I was determined to find out what had caused this last admission to hospital. It was not fun to have my blood drawn daily. Neither was it fun to have the phlebotomist coming in to draw blood gases from my wrist (ouch!) also daily. It was scary when they told me that my hemoglobin was declining daily and when it hit 80 they started the IV drip of two units of packed red cells again.
    They did not do the Methylane Blue flushing during this admission because my methemoglobin was 11, not 17 or 29. Methylane Blue is a poison and they had to check with St. Paul's Hospital in Vancouver in order to determine the amount to be used on this little body. Plus they cannot keep doing this poisonous flushing every nine months. I was told this by a specialist wearing his sternest facial expression, obviously in order to scare me.
    Who knows what amounts still stay in the system? Methylene blue may be dangerous to patients who have or may be at risk for a blood disease called G68PD deficiency and should not be used by them. If you or your child has G6PD deficiency, always tell your health care provider before receiving treatment.
    Another interesting note is that ascorbic acid can also be used to reduce the level of methemoglobin. I don't know much ascorbic acid is required but I intend to find out. Oranges contain ascorbic acid do they not? The normal methemoglobinemia scale is about minus 0.1. Mine seems to stay at about 3.
    This specialist physician also told me that I could no longer increase my dosage of Dapsone. It has to stay at one per day no matter how severe the outbreak. I must also take Cimetidine, a drug that is usually used to control excess stomach acid. It helps to reduce the impact of Dapsone on methemoglobin.
    Dapsone is the dangerous drug for methemoglobinemia, and Zylocaine injections also pose similar dangers. After my admission to hospital last May, I found out that phosphates can also add to the level of methemoglobin. There are phosphates in packaged meats, with lots of those little guys in bacon and cured ham. Were I to double up on Dapsone because of a particularly bad DH outbreak, have a few injections of Zylocaine, then add some back bacon and packaged cold cuts, I might well be back in hospital with elevated levels of methemoglobin.
    This time I also discovered that phosphates are sometimes in chewing gum, malted milk drinks, drinking chocolate, baked beans, instant coffee, curry powder, white pepper, some lipsticks, gravy browning, self basting turkeys, brown rice syrup, supplements and, of course, luncheon meats.
    Fifteen years ago I was told I could use Atarax for the itch. Now they tell me that this drug is not only very sedating, thus slowing the heart down considerably, it is a poison that can cause tardive dyskinesia, a potentially irreversible form of brain damage. Again, fifteen years ago it caused me to experience facial gesticulations, tongue protrusion, hands that trembled and a speech pattern that often defied translation. That was because I was wrongly prescribed Loxapine for the itch, and along with Atarax, it ruined my life forever.
    Misunderstandings persist. Celiac disease can look like Crohn's disease. It can look like colitis. It can look like irritable bowel disease, and because physicians have been taught that celiac disease is very rare and they often simply write it off as irritable bowel syndrome when they cannot find the cause of a GI problem. They forget that it could be celiac disease. It is just under-diagnosed, and peri-menopausal women suffer the most because they are often labeled as "depressive", or worse yet, "neurotic". I was told when working as a nurse that "irritable bowel" often meant "we just don't know".
    The world has yet to define a universal "gluten-free" standard. For international trade purposes, the Codex (WHO - World Health Organization), Committee on Nutrition and Foods for Special Dietary Uses is in the process of revising their standards. At this time they are unable to reach a consensus. {Hey, this has been since 2008 and it's already 2012! What do they do at these Forums?} The Food Allergen Labeling and Consumer Protection Act (FALCPA) has committed to defining "gluten-free" for labeling purposes by 2008. We still do not have a World standard. FDA (Food and Drug Administration) acknowledges that the situation needs to be rectified and it has made a start by including gluten with other major allergens in their ingredient disclosure requirements.
    The greatest progress is among the health declarations on restaurant menus and whole foods markets. Wal-Mart have also cast their lot with this group, establishing entire sections dedicated to gluten-free foods. We are finally starting to get rid of ‘stealth glutens' - those in flavor carriers, binders, fillers and emulsifiers, and used in everything from salad dressings to self-basting turkeys. We have come a long way, but we still have miles to go in reforming the food industry. As a waiter said to my friend when she told him she has celiac disease: "We don't serve fish in our restaurant, in fact we have nothing out of the sea".
    References:
    DeBaun, MR - Frei-Jones M Vichinsky E Hereditary methemoglobinemia in Kliegmann RM, Behrmann RE, Jenson HB, Stanton BF, eds. Nelson Textbook of Pediatrics 19th ed. Philadelphia. PA Saunders, Fernandez Frackelton M Bocock, J. Cyanosis In: Marx JA, Hockberger RS, Walls RM, et al, eds. Rosen's Emergency Medicine Concepts and Clinical Practice 7th ed. Philadelphia, Pa, Mosby Elsevier; 2009, chap, 29. "Keeping Food Safety in the Mix: Food Safety in Grain Based Foods and Bakery Products" Gluten-Free Formulation, Kim Decker

  • Recent Articles

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
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    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, to the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service and emotional support animals.
    Source:
    cnbc.com

    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center