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I have been seeing my family doctor about my rashes for the last few months. All he has told me so far is it's a food allergy and he gave me the DexPak -13 day dose which helped. But of course the intense rash came back right after I stopped taking it. From the pictures I've seen all over the internet and on here, and the descriptions, I am convinced I am having a reaction to gluten.

Is the DH test something any doctor can do, or do I need to see a specialist? I don't want to waste my time tomorrow if he's just going to send me to another doctor. My insurance also does not pay for allergy testing - but I take that as the usual skin prick tests, and not a blood test. Is this correct?

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If you want to have a shave biopsy of a suspected DH area, you really need a dermatologist, and one who knows something about celiac and DH, because the biopsy is not taken of the lesion but of the clear skin immediately adjacent to a lesion. So many doctors do not take the biopsy sample correctly beause they don't know any better.

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Yup. A dh punch biopsy is what you need. And a derm who knows what the heck they're doing. AND DO NOT GO GLUTEN FREE OR GLUTEN LIGHT UNTIL THE BIOPSY IS DONE & YOU HAVE THE RESULTS BACK & KNOW THE DERM DID IT RIGHT!

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a derm who knows what the heck they're doing.

yep, unfortunately rarer than one would imagine

I would expand on that by saying : the most important doctor a celiac ( especially if undiagnosed ) can have is a doctor that will leave his ego at the door and will actually pay attention to what you say .

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My PCP referred me to a Dermatologist for a biopsy. I actually had 3 biopsies but they were from the lesion itself. After research she ordered Dapsone for me and due to the good response, along with Gluten free diet, agrees I do have DH Celiac.

I have a great PCP/Internal Med as a doctor! She has other patients with DH but told me I am the worst case she has ever seen.

Ask questions before you go see a doctor. Co-pays and such are way too expensive to waste on Derms that will not test you properly! Good Luck

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I guess I have a good primary care pyscian. I told him I thought it was gluten and he agreed. So we did the celiac panel. I'll know the results in a day or two. He also referred to me an allergist if we need to go that route. He gave me a cortisone shot as well. Not really sure what that is gonna do, but we'll see!!

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Ppl with dh generally test neg. on the celiac panel.

Read & learn:

Interesting Reading on DH:

http://www.celiac.co...-reading-on-dh/

Descriptions of DH Types:

http://www.celiac.co...ns-of-dh-types/

Help for the Itching, Stinging, Burning, Pain of DH:

http://www.celiac.co...__1#entry823195

DH Photobank:

http://www.celiac.co...-dh-photo-bank/

Newbie 101 for celiacs

http://www.celiac.co...ewbie-info-101/

Furthermore, if the doc didn't do the current FULL panel then you didn't get proper celiac blood testing. Here's the info.:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

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I have been reading on a lot on here and learning. Thank you.

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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
    • A negative result from a biopsy that is. 
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