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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.

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'lynrn    3

I was originally diagnosed with celiac disease as an infant 60 yrs ago. Raised for many years on a gluten free diet. My mother was told I had outgrown it and as foods were reintroduced in early teens appeared to not have many problems. In hindsight, I was classic celiac. Five years ago my symptoms were the checklist for every conceivable problem associated with celiac but doctors didn't come up with a diagnosis. I am a nurse and one night a doc who I work with was discussing all my issues and suggested...once a celiac,always a celiac. I googled celiac disease and was shocked at how everything fell into place including D.H. I immediately went gluten free. Most of my symptoms have greatly improved. My eldest daughter has been diagnosed as celiac as well as casein and soy intolerant by genetic testing. I have never had any testing done. I am very sensitive to gluten especially CC. I recently was staying with family for 4 months and was continually getting glutened.I suspect dairy and soy as well but just don't know. I will be getting health care coverage in a few weeks and would like to get some kind of testing done. I am not prepared to go back on a gluten diet to get a bowel biopsy done. I simply would not be able to function. What other testing should I be requesting? I have severe osteoporosis and take calcium,vit D and mag for that as well to control severe muscle spasms. I was recently losing weight rapidly from being glutened but now that I am in my own place, that is under control again.I have peripheral neuropathy in my hands and feet but it is not progressing and the ataxia is now stable. Avoiding gluten and my D.H. is under control. I know if I go back on gluten foods that I can trigger that and I guess they can test the lesions and diagnose me from that?? I feel I want to have an idea of what I am asking when I hit a new doctor. I have been diagnosed in the past with fibromyalgia and reflex sympathetic dystrophy but on a gluten free diet both conditions are much less of a problem and I almost hate to mention them. Should I be looking for a specialist( gastroenterologist) or can a GP work? Is this more an internal medicine thing??? Any suggestions are appreciated.

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Skylark    935

If you were diagnosed as a child with celiac and have DH, you need no further diagnosis. Celiac disease is lifelong, and your childhood diagnosis is still valid. In fact, it means you have severe celiac as the disease is hard to catch in children and 60 years ago they were only diagnosing people who were very ill. You could do serious neurological damage to yourself with a gluten challenge. Please don't do that to yourself!

You need to have your thyroid tested regularly, and vitamin levels followed including B12. You also need to have the bone density checked to see if you're incorporating the calcium and D. With the neurological problems you may be B6 and/or B12 deficient. You can ask for allergy tests for dairy and soy, but it may be easier to eliminate them and see if you feel better as the tests are not very accurate.

Good luck!

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'lynrn    3

Thanks Skylark. I will get the vitamin and thyroid levels you suggest checked. I am afraid a doctor may question my celiac dx as it has never been confirmed, at least by any of the modern standards. The dx of DH was another of those night time consults of a doc saying sure looks like it and giving me Dapsone ointment when nothing else would clear it up. It reappears whenever I have had a bad exposure to gluten. I seem to be more and more sensitive to any exposure to even trace amounts of gluten. I will also ask for the dairy and soy allergy tests as my daughter's tests with enterolab came back with cassein and soy as culprits for her as well as gluten. Thanks for the info. I sure am not going back on gluten for anyone to prove I can't tolerate it.

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Skylark    935

Your doctor does not have your childhood medical records and there is no sense in confusing the issue. Unless you really want the DH biopsied (and I don't see why you'd want to go through that) tell him it was a firm diagnosis. You can explain that there is a lot of damage and severe osteoporosis because the unfortunate standard of care back then was to try to reintroduce wheat to childhood celiacs.

With the casein and soy, we tolerate it worse when there is villous damage. Damaged villi don't break proteins down very well so larger bits of immunogenic peptide are left. There can also be some cross-reactivity between casein and anti-gliadin IgA. As you heal up after your recent gluten exposure, digest proteins fully again, and the anti-gliadin IgA goes away, you may find that you tolerate casein or soy again. That intestinal IgA Enterolab tests for actually comes and goes as part of normal immune function much like IgG to foods can.

My story is so much like yours. They suspected celiac when I was an infant and then switched to wheat allergy. I was raised off wheat but eating some rye and barley, having stomachaches, and taking a lot of bentyl. I was put back on wheat as a teen and seemed to tolerate it but by my late teens I had "IBS" and hypothyroidism and in my early 20s I had a flu and the chronic fatigue, "gastritis", and depression set in. I self-diagnosed five years ago at 36 years old when I went on an elimination diet out of desperation. My doctor said he'd test if I wanted to gluten challenge but he said the tests aren't very good and that my response to the diet was more diagnostic. Since then, I just tell docs I'm celiac. It's much simpler.

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    • Hello, I have been dealing with a mysterious rash for the past ten years that I am slowly beginning to think is DH.  It comes and goes, is itchy as all get out and shows up in all the areas that DH appears (elbows, back, torso, knees and base of neck).  It comes and goes over the years which has thrown me a little, but from what I can tell it can happen with DH? Anyways I went to an allergist, he was a jerk and told me it was not an allergy and to get a biopsy (which was done ten years ago when it first happened, but okay).  Me being at my wits end I called up a local dermatologist and got an appt for a biopsy.  I went in armed and ready with the info I have read here about the correct biopsy etc.  Well of course the dermatologist wouldn't give me the time of day Would not listen to the past history of the rash or look at photos, was in and out within five minutes and insisted on a scratch biopsy instead of a punch biopsy.  She simply said she would be highly surprised if it was DH.  I try to respect doctors so I pushed but I did not push hard enough.  She did the scratch biopsy against my recommendations.  So that brings us to today when I received a message that the biopsy showed an allergy and that they could either give me an order of prednisone or refer me to an allergist.  Now if you remember my local allergist sent me away and said it wasn't an allergy.  I am so done and I refuse to just keep medicating myself, I need to find the root cause.   So I have a physical tomorrow night with my regular doctor and I am tempted to just insist on a punch biopsy next to the rash for a proper biopsy.  Couple questions for you guys though.  If a scratch biopsy came back as an allergy could that possibly lead to gluten allergy (I know it doesn't prove that, but could it mean it could be gluten?).  Should I keep pushing for a punch biopsy? I am planning to go gluten free after this appointment anyways but I keep eating it to try and get a proper diagnosis.  I feel I should get a proper diagnosis, one to keep me on track, one to make sure that is what it is and also I did try gluten free for 30 days before and it didn't seem to help the rash.  But from what I have read that could have been to short of a time.  I feel I need a proper diagnosis to help me stay with it and keep on the right path.   Lastly, the rash definitely went through stages and is at an end stage, still itches like crazy but isn't as bad looking as when it started.  Does it matter when you take the biopsy as long as there is a rash it will potentially show?  I hope all this makes sense.  I am tired of being told I am crazy from doctors.  If they could find the solution I wouldn't be looking myself.  I would be very happy to be proved wrong but so far that has not happened and I just want an answer! So tired of being itchy!! Thank you very much for your help and listening!!!
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