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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Rash Disappeared When Diet Tweaked
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dws    4

I have recently had to go to a whole foods/non-processed diet due to my increased gluten sensitivity. I am one of those people who doctors do not think has celiac disease. The only blood work that I scored above normal was an IGG blood test(a pretty high positive). Negative on IGA's including TTG. Negative on genetic testing. No biopsy done while eating gluten because my doctor was sure my blood work pointed to non-celiac gluten intolerance rather than celiac. I accepted this diagnosis and was very happy with the disappearance of my intestinal symptoms when I stopped eating gluten. After abour 2 years, I began to struggle again and have been kind of on the run trying to stay ahead of the sensitivity curve, leading me after a lot of trial and error to a whole food diet which has helped a lot. I can't remember when I started having an angry, itchy, and sometimes painful red rash on either side of my nose where my nose meets my cheeks. I think it may have been about 15 years ago. Long before I eliminated gluten which was about 5 years ago. My doctor decided it was not Rosacea and gave me a strong antifungal cream which kept it somewhat at bay if I used it every day but never got rid of it. Well, with this final tweaking of my diet, the rash has gone away. Now I have gone back to wondering if I have Celiac after all and that they just don't know enough about it to exclude it with the current testing standards. I also have always had discolored tooth enamel with white bands. Lactose intolerance has also become a problem in the last couple of years. I know the location of the rash isn't typical for DH, but what do you folks think? Anybody had a similar rash?

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eatmeat4good    313

I too, had rashes that did not occur in the typical places for Celiac DH. I was on anti-fungals, aniti-virals, anti-bacterials, and finally they said it was neurotic excoriation. It went away but only after 14 months totally gluten free. I went Paleo and it all went away...including depression and anxiety, migraines and muscle weakness. I say if the rash goes away when you get off of wheat and gluten...then it probably is DH...

They certainly do not know enough about it to be diagnosing it consistently with any accuracy. Your research is as good as it gets. I would assume DH and live accordingly. Congratulations on healing yourself!

This is just my humble opinion after 7 miserable years with this rash moving around my body and landing on my face. Mine is on the forehead and chin...or should I say WAS!!! Because I too, healed myself. Turns out I am extremely sensitive to gluten...as you are....and I do way better on whole foods, no preservatives and no grains.

Took a long time...but the rash is gone...never could get a dermatologist to agree to biopsy...so we will never know....except that...we already know!!!! Thank you for sharing your story because other's will read it and heal from it too.

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itchy    11

You are right about the testing. Most of the active posters here have had the experience of not being diagnosed by the tests used.

When your doctor says you may have 'non=coeliac gluten intolerance", he is probably refusing to acknowledge that his tests don't detect your illness. From your general symptoms you certainly sound coeliac to me, which means that you have to eat gluten free for the rest of your life. If indeed you are coeliac and have DH, I think that you can expect to see the rash return (perhaps with a vengeance) whenever you return to a gluten diet.

Perhaps not a typical location for a DH rash, but otherwise sounds like it. Most coeliacs are intolerant of milk, I'm not sure it is lactose intolerance, because Lactaid never made any difference for me. I am still intolerant of raw milk products but don't have a problem with cultured milk products like cheese or yougurt. Generally milk intolerance improves with a gluten free diet.

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dws    4

You are right about the testing. Most of the active posters here have had the experience of not being diagnosed by the tests used.

When your doctor says you may have 'non=coeliac gluten intolerance", he is probably refusing to acknowledge that his tests don't detect your illness. From your general symptoms you certainly sound coeliac to me, which means that you have to eat gluten free for the rest of your life. If indeed you are coeliac and have DH, I think that you can expect to see the rash return (perhaps with a vengeance) whenever you return to a gluten diet.

Perhaps not a typical location for a DH rash, but otherwise sounds like it. Most coeliacs are intolerant of milk, I'm not sure it is lactose intolerance, because Lactaid never made any difference for me. I am still intolerant of raw milk products but don't have a problem with cultured milk products like cheese or yougurt. Generally milk intolerance improves with a gluten free diet.

I am not sure it is lactose intolerance either. I have been somewhat confounded by my experiments with dairy. I seem to do best with aged cheese like cheddar which is low in lactose, but then I too have trouble with Lactaid which is supposed to be just as low in lactose. Yogurt does kind of so-so for me. I drank milk with no problem up to a few years ago, so I would question a casien problem- seems like it would have bothered me since childhood.

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Metoo    6

I have recently had to go to a whole foods/non-processed diet due to my increased gluten sensitivity. I am one of those people who doctors do not think has celiac disease. The only blood work that I scored above normal was an IGG blood test(a pretty high positive). Negative on IGA's including TTG. Negative on genetic testing. No biopsy done while eating gluten because my doctor was sure my blood work pointed to non-celiac gluten intolerance rather than celiac. I accepted this diagnosis and was very happy with the disappearance of my intestinal symptoms when I stopped eating gluten. After abour 2 years, I began to struggle again and have been kind of on the run trying to stay ahead of the sensitivity curve, leading me after a lot of trial and error to a whole food diet which has helped a lot. I can't remember when I started having an angry, itchy, and sometimes painful red rash on either side of my nose where my nose meets my cheeks. I think it may have been about 15 years ago. Long before I eliminated gluten which was about 5 years ago. My doctor decided it was not Rosacea and gave me a strong antifungal cream which kept it somewhat at bay if I used it every day but never got rid of it. Well, with this final tweaking of my diet, the rash has gone away. Now I have gone back to wondering if I have Celiac after all and that they just don't know enough about it to exclude it with the current testing standards. I also have always had discolored tooth enamel with white bands. Lactose intolerance has also become a problem in the last couple of years. I know the location of the rash isn't typical for DH, but what do you folks think? Anybody had a similar rash?

I 'had' a small 1" diamter spot on my hand, that would blister, peel off, be all puffy and inflammed looking...then repeat that cycle over and over. It hurt too! Hurt like a burn would. My doctor passed it off as stress induced excema, said he had never seem an excema patch that concentrated though.

6 Months later I went gluten free and it dissapeared! Now it returns only when I eat gluten...and its spread it now covers more and more of my pink/side of hand when I eat gluten. (I am only on my 4th or 5th glutening) Now I seem to more sensative though too, bread crumbs were all over my kitchen from the kids...I broke out somehow from that.

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