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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Challenge. Ugh.
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2 posts in this topic

So I was "mostly" off gluten for 3 years (not worry about crumbs in the peanut butter, eat some icing off the cake at work, still eat soy sauce etc), and feeling good. I had classified myself as NCGI because I had some negative TTGs before going off. I decided to do the genetic test in the hopes that I didn't have a celiac gene, and would then feel quite fine doing my "mostly" diet and not causing any long term health problems vs doing a poorly controlled celiac person's diet. Lo and behold ... DQ2 AND DQ8 possible. Oh well, so much for that strategy.

Now I'm at the 2 month mark of full gluten challenge - hasn't been fun. My ibs is worse, but the worst is my skin - I have overall itchyness, random mouth sores, swollen scaly patch on the edge of my lip that won't go away, fatigue, irritability, and somehow my husband is still hanging in there with me! My usually clear skin is covered in tiny little bumps (not exactly acne, although I have some of that on my face too) but if you look close it's millions of little skin coloured bumps, like keratosis pilaris but all over my neck, shoulders and back. Yuck!! I haven't changed anything else. I always feel like scratching (but don't). My joint stiffness is worse (I also have ankylosing spondylitis and am on a biologic and celebrex).

I was planning on doing 2-3 months, but I'm so done!!! Going for my labs this week and then probably I'll book an endoscopy asap.

In the meantime, I have been checking things off my gluten "bucket list" - this week I had mcnuggets and fries (yum! eat that about once every 3 years anyways), and a mini Cinnabon. In heaven. Food cravings, however, are out of control. I need my test results back before I gain too much weight!!

Anyways, I'm amazed I made it this far, can't wait for my skin to clear up. Anyone else get these funny bumps all over?? I've had it on the backs of my arms before, but this is ridiculous (and gross).

Hopefully I'll be posting some negative test results, and happily going back to my "celiac-lite" diet and feeling way better, and clearing up before the warmer weather and lighter clothing arrives!!

Thanks for reading :)

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Just wanted to throw something else in there, though you might not thank me :). I tested negative for celiac from blood and biopsy, and then in a gene test. I been gluten light for years. I did 3 weeks of a gluten challenge, which was enough to convince me to try strict gluten-free. I have found a massive difference between gluten-free and gluten light, I have my life back.

I have been diagnosed non celiac gluten intolerance, on the basis of my response on and off gluten, and medical history.

I am not saying it will be like that for everyone. Might be worth considering a short spell strictly gluten-free.

Good luck

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    • I would say get retested, to be sure, do a gluten challenge with her where she eats gluten for 12 weeks, not much just a half slice of bread a day or a wheat cracker for the blood test and 2 weeks for the biopsy. You mentioned bumps, and dry patches...this might be DH from celiacs and if it is you can go to a dermatologist and they can test it. In some people with DH reactions to gluten, their intestines do not show much damage as most of the antibodies are directed elsewhere. In this case you would have your symptoms. Now Celiac is a autoimmune disease that commonly has other auto immune diseases associated with it. NOW if your daughter has the gene for it she could have another automimmune disease I am not very familiar with and someone else might be able to help you more on suggestions for testing. Now in my personal opinion it sounds like she was still getting into gluten when you said she was off of it. NOTE gluten is a tricky bugger, it is a protein smaller then a germ that can stick in cracks and scratches on all your utensils, food prep area, knifes, etc. As a flour it can hang in the air for hours and even be inhaled effecting some of us. It is present in a lot of things we do not consider, like makeup, playdough, shampoos, seasonings, sauces, even some dry wall spackles.  Now if she is in a shared house hold with other kids and not everyone is on this diet she has likely been getting into gluten somewhere, like touching glutened surfaces the other kids touched after eating gluten foods then putting her hand in her mouth or on safe foods. Or just randomly eating gluten foods, note symptoms can last weeks and wane from how it is effecting you. It does not take much to trigger symptoms you might have to be more careful and move her to a whole foods only diet, and have a separate prep area, utensils, cooking zone for her if you wish to keep fixing separate meals for her vs the gluten family.     I would suggest just changing the entire family over, anyway perhaps start with a separate fold out table, use freezer paper to line the prep area, a microwave, mini toaster oven, and some microwave cook ware like steamers, steam bags, etc. and using gloves to fix her meals. She will need her own condiment jars (crumbs in hte jars) and area for safe snacks. I would suggest getting her only gluten-free CERTIFIED FOODS for now. You can find some whole food healthy snacks at mygerbs.com, and a few other places. I will provide a link to gluten-free food list. PERHAPS you can change the entire family over....now days it is more like changing brands as everything you used to eat is available in a gluten-free brand. ALSO have a lot of dairy free options there. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
    • Hi wondering if someone could help. my daughter has mildly raised TTG  levels and the gliadine levels, she has one Coeliacs gene, but her biopsy came back negative.   We have kept her off gluten (and low dairy) for nearly a year to see if her symptoms improved.  They haven't.  But I don't know if they are related to gluten specifically.  Just wondering if anyone has other suggestions that may be going on with her.  Her symptoms are: - Short stature, she's nearly 9 and my 6 year old boy is nearly bigger than her - bumps on back of her arms - urine leaking and occasional soiled pants, which could be from constipation she has at time's - sticking out stomach - dry patchy rashes on her face - joint pain sporadically - vomits every 6 weeks, but hasn't had gluten and seems to be no food connection - reoccurring thrush She had gluten last night at a party and was fine today. I'm a bit lost and not sure where else to turn.  Thanks for any help.
    • We have gone gluten free, our whole house, as of a month ago. It was pretty seamless since I had been gluten-free for 5 months last year. I have found many good recipes, and my picky husband and one of my boys who is also a picky eater, even prefer many gluten-free recipes to the regular ones.  My husband did see my point about the size of the gluten protein means nothing. Its a gluten protein period, that's what you are avoiding. It doesn't matter if its hiding in the scratch of your baking sheet and you can't see it. You can't see the wind, but it's still there. I hear you on the anemia. I've been anemic for several years, I just thought it as because I was getting a little older. Has your anemia gone away or do you still have problems with it? 
    • Ennis, it is made out of metal, coated with plastic I think. You have such a hard time, my heart really hurts for you. But you are such a support to those on this board, and a great teacher for those of us who are new.  
    • Thanks everyone! I think its hard for people to fully accept because they cant see the damage it does every time you get glutened. It's invisible. Im glad to know I wasnt being paranoid. I sure was when I was first diagnosed. I laugh at myself now, but its a pretty steep learning curve. 
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