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DH questions

Clarice

By Clarice
in Dermatitis Herpetiformis

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Clarice Newbie
Clarice
Posted

So, I've had a skin condition for years which looks like DH but blood tests for it come back normal.  High doses of steroids or of immuno-suppressants work well to clear my skin, but as soon as they are reduced the inflammation returns.  I tried a gluten free diet for a month, during which my skin seemed to set on fire even more.  My dermatologist says if my problem was DH then I would have had a positive result from going gluten free for four weeks, although information on the internet suggests it takes at least 6 months. 

Does anyone have some experience of something like this?  Do I believe my dermatologist or the internet???

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squirmingitch Veteran
squirmingitch
Posted

Has your derm ever done a dh biopsy? BTW, it's not taken ON a lesion, it's taken on clear skin adjacent to a fresh lesion. I bet your derm doesn't know that. I bet if you ask for a dh biopsy he will take it right on top of a lesion. Ditch him & get a derm who knows about celiac & dh & how to properly take a biopsy for it.

The antibodies can stay under the skin for years. The derm is wrong. 

Please describe how the rash acts & what it feels like.

arthurdigbysellers Newbie
arthurdigbysellers
Posted

Person above me is correct. You need a skin biopsy, and it must be performed correctly. I never had a positive blood test but my biopsy came up positive for DH.

Going gluten-free for a month usually won't  clear up DH. It commonly takes ~6 months, and this only on a very strict gluten-free diet. Any exposure to even small amounts of gluten (through cross-contamination, etc) can lead to flareups. 

 

 

squirmingitch Veteran
squirmingitch
Posted

60% of celiacs with dh test negative on the celiac blood work. Fact. 

Open Original Shared Link

Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease.

emma6 Enthusiast
emma6
Posted

maybe check exactly which blood tests you had done as well if the dermatologist doesn't know much about celiac its possible they didn't run enough

squirmingitch Veteran
squirmingitch
Posted

The steroids can cause false negatives on both the celiac blood panel as well as the dh biopsy too.

Here is the current full celiac serum panel:

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 

 


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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      V. interesting. It might well explain the tiredness, and the increased headaches, then.   I'm trying to get my TTG numbers down a bit by avoiding eating out.  Hopefully then if I've healed more I guess I will be able to absorb more iron.  Will find out at the next blood test in the autumn. Thanks so much for your help.  
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