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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 Celiac.com's FREE weekly eNewsletter   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

What Kind Of Doc?

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I have been to my primary care physician, the emergency clinic, and an immunologist/allergist. I have had lots of diagnoses over the years, but have had terrible blistering rashes for the last two years that were initially diagnosed as MRSA (came back negative) and then as contact dermatitis. My doctors have given up on me and simply settled for "extremely sensitive skin", which is not a satisfactory answer. I scheduled an appointment with a dermapathologist, but she cannot see me until December and I am so miserable now that I cannot even walk without extreme pain.

A friend who has celiac recommended I look into it and I believe this is my answer. I left a message for my doctor requesting a scrip for dapsone to see if that will provide me any relief. I have had a negative blood test for celiac, but I have IgA deficiency, which increases my risk and the symptoms I have been suffering for years that have been diagnosed as one thing or another fit to a T.

So what now? These doctors have failed me. What kind of doctor do I go to to determine whether I have celiac? Is dapsone for the DH and a change of diet our only options or is there a type of doctor who would have other treatment options for this disease?

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What does it matter what the diagnosis is? I know if I am hit on the head with a hammer it's going to cause physical pain and possibly neurological damage. If I ingest wheat it will do the same thing. It no longer takes a doctor to confirm this.

Yes, we get a tax break if we have a "legitimate" diagnosis... What else? I got my diagnosis from a naturopathic physician back when the orthodoxy of western medicine believed we were one in 100,000 and they'd never see one of us in their practice. The ordeal of getting the diagnosis would have done me too much damage by the time western medicine realized it was wrong.

But, in the end, it's not what the diagnosis is, it's about how we survive. Take it and run.

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Wow Anianna that sucks & no appt until December?!

I don't have DH but I thought a regular dermatologist could Dx it - not sure if I've seen the word Dermapathologist before.

Re your last question: If it *is* DH, and therefore celiac disease, there's no other type of (reputable) Dr w/ a treatment that doesn't include 100% gluten-free.

Even though this is about Drs, you might get more replies asking in the DH section http://www.celiac.com/gluten-free/forum/26-dermatitis-herpetiformis/

There's gotta be a way to not wait until December, isn't there?

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