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texas flood

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texas flood Newbie

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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mushroom Proficient

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.

squirmingitch Veteran

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!

cahill Collaborator

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 .

sisterlynr Explorer

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

texas flood Newbie

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!!

squirmingitch Veteran

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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texas flood Newbie

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

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    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
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      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
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