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I Suspect That I Have Dh...

CNV2855

By CNV2855
in Dermatitis Herpetiformis

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CNV2855 Contributor
CNV2855
Posted

I've been biopsied twice for DH because the rash is the first, and most reliable indicator, that I've been exposed. Diarrhea can be caused by illnesses, etc. but the rash only appears when I'm glutened and covers my back/chest and now has apparently spread to my elbows.

I've gone in twice and both times they said, "oh this is nothing but folliculitis."

This is exactly what it looks like:

dermatitis_herpetiformis_50.webp

Could it really just be folliculitis that for some odd reason flares/remisses depending on my exposure to gluten or is my dermatologist just an idiot? He would have to be quite the idiot to screw up a biopsy twice; even after I told him to make sure he biopsies the skin around the sore, not the sore itself.

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eatmeat4good Enthusiast
eatmeat4good
Posted

Unfortunately DH can test negative on biopsy, but still be DH. There are false negatives with the skin form of Celiac, just as there are with the gastrointestinal biopsy. If it goes away or stops hurting when you don't eat gluten, then that would seem a better indicator than the biopsy. That said, there are people with other kinds of rashes, eczema, psoriasis, etc. that do clear up on going gluten free. Whether or not it is DH being gluten free may help. Even the slightest cross contamination or trace gluten will make DH flare...so that is another way to tell. You might never get a Dr. who will believe you. I didn't. But being gluten free healed my rash after about 8 months.

Hopeful1950 Explorer
Hopeful1950
Posted

Ohhh, don't get me started on dermatologists :angry:

At least your derm didn't call you "crazy" for example: "stress excema" "neurotic excoriations' or that you are a "picker". From what you say it does sound like your symptoms were minimized and dismissed. Don't give up until you find out exactly what it is. I suffered for almost 8 years because I kept buying into what the derms were saying. Now my skin is ruined.

The picture you linked looks exactly like my DH.

Has the derm or any doctor done a celiac blood panel? I think DH is wierd and even even if a skin biopsy is done correctly it is still hit or miss. No guarantees that a blood panel would come back positive if it is DH either, which is one of the reasons it is so hard to diagnose definitively.

dilettantesteph Collaborator
dilettantesteph
Posted

My son's dermatologist told us that he needed an intact blister in order to get a biopsy. She was the best expert available in the area.

There are other rashes caused by gluten. Open Original Shared Link

That might be the reason for the negative diagnosis. The rash can still be a very good indicator of gluten contamination.

itchy Rookie
itchy
Posted

It seems that the medical establishment is defining these various skin conditions by their external manifestations, rather than their cause. In other words DH and eczema are defined by what they look like.

For those of us that have the conditions, we are concerned only about the causes, ie gluten.

That allowed my dermatologist to agree with me that the rash on my arms was DH, while the different looking rash on my shins he insisted was 'just eczema'. Both felt the same to me, and both disappeared with a gluten free diet.

IMO they are not different conditions, they are simply the same condition, looking a little different.

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