DH questions

[Clarice 0]

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???

[squirmingitch 696]

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 0]

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 696]

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

http://www.cureceliacdisease.org/faq/what-is-dermatitis-herpetiformis-dh/

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

[emma6 25]

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 696]

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