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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

Biopsy result?
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I had a biopsy on Friday but he biopsied the rash not the skin next to it. I know this is wrong when testing for DH but he said that's not what it is. Can anyone tell me if they had a biopsy of the rash before they knew what it was and what the pathology report said? He just called me and said it is a drug allergy. I only take one medication and I have been on it for several years. I also stopped taking it for several months and the rash didn't go away. How do they know this? Just based on what it looks like? Because the last biopsy said "atopic dermatitis" and she said it was eczema. So 2 different diagnosis same rash. Is one right? Us either of them right? 

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I've been told a lot of things over the years... from allergic dermatitis, to "sensitive skin" to ???? to acne. I have tried to no avail to get the skin biopsy, so take my statements with a grain of salt. I am fairly confident (as was the GI I saw recently) that I have DH as my outbreaks are always directly linked to GI distress from gluten ingestion, and come in discrete "batches" as opposed to continuously, as one might expect for the other conditions I've been purported to have.

Though there is some variability in the timeline, I will get GI issues within a couple of hours of eating something bad and a couple of days later the rash breaks through the top layer of my skin. It always hits the exact same regions, and I can usually tell where it's going to show up beforehand. It will take several weeks to stop bleeding/crusting and then a purple mark will appear on the healed skin for a few months. The treatments for the various other things I've been told it is are categorically useless or irritate it further. The only thing that has helped is a very strict version of the GFD (I essentially eat no processed foods) and avoidance of super high iodine foods (seafood).

I think in my case, the thing that has stumped all the doctors when I've suggested that it might be DH is that it isn't "textbook" in the sense that it isn't restricted to my stomach and elbows. Ironically, I have read a few dermatology textbooks and they all said that DH was highly variable in appearance and could appear almost anywhere, and that it commonly appears on extensor surfaces such as the elbows because these are high friction areas - the rash appears where the skin gets microdamaged and irritated. Most of them also cited locations such as the shoulders, back, buttocks and scalp as very common locations for the rash.

I guess the silver lining is that you don't "need" dapsone to fix the problem if it actually is DH, just a super strict GFD. But... I understand the frustration. Hope this helps?

 

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On 8/8/2017 at 5:23 PM, Jlewisrn said:

So 2 different diagnosis same rash. Is one right? Us either of them right? 

I had two different diagnoses of a rash in two consecutive visits. I get the feeling its not an exact science!

 

 

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On 8/8/2017 at 0:23 PM, Jlewisrn said:

I had a biopsy on Friday but he biopsied the rash not the skin next to it. I know this is wrong when testing for DH but he said that's not what it is. Can anyone tell me if they had a biopsy of the rash before they knew what it was and what the pathology report said? He just called me and said it is a drug allergy. I only take one medication and I have been on it for several years. I also stopped taking it for several months and the rash didn't go away. How do they know this? Just based on what it looks like? Because the last biopsy said "atopic dermatitis" and she said it was eczema. So 2 different diagnosis same rash. Is one right? Us either of them right? 

I was biopsied in 2006 or 2007 the correct way and they called it dh. But no one told me anything about celiac then. It wasn't until I joined this board that, I think it was jmg, told me dh meant celiac diagnosis. 

Btw the rash presented on my elbow area and a bit down from that. First year or two of going gluten-free I knew I was sensitive to something as I got the itch, not the rash.

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I suffered with rashes on my elbows knees and has of spine for years. The itching was intense and made me totally miserable. Rash started as large blisters which eventually popped and scabbed over.. Doctor prescribed every cream known to man and none worked. In the end I saw a new doctor who knew immediately what it was. One visit to the hospital and biopsies on the rash area revealed DH. I am registered Coeliac and now never eat  gluten and I never have problems. 

 

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