Testing For Dermatitis Herpetiformis

[Blondie]

Hello, I have a question about testing for Dermatitis Herpetiformis. Is there any thing such as a false-negative when it comes to a skin-biopsy?

My skin-doctor thought it was psoriasis, but I am fairly sure it is DH, so we agreed to test for both. But if the DH test comes back negative, is there the slightest possibility in the world that I could still have DH?

[Ursa Major]

Yes, there is absolutely the possibility of a false negative with DH. Many dermatologists haven't got a clue on how to do the test right, and mess it up, only then to declare it was negative.

The skin biopsy needs to be taken right BESIDE an active blistery outbreak. If it is taken right through the outbreak it will be negative, even if it is DH. Also, if there are no active blisters at the time of testing, it will also end up negative.

My dermatologist took a biopsy right through a patch that was almost healed, which was totally useless. Needless to say, it was negative. Meaning, I still have no idea if I have DH or not. And I have been gluten-free for two years now and may never know.

[Blondie]

Wow, sad to hear that :\

I sorta depend upon my DH diagnosis in order to get funding for my glutenfree diet (i have selfdiagnosed coeliac)

Well, I hope this guy knows what he's doing and took the biopsy where it's supposed to be taken

[Franceen]

I, too, had all negative results - mainly because I had been Gluten Free for a while before the tests - both blood and biopsies. The biopsies I had (2 at the same time) were one near and one right on a blister - but they weren't fresh blisters.

That same Dr. still diagnosed it as DH because of the gluten-free success. By the time all the paperwork and scheduling for the Gastro. I had been gluten-free for 4 months and an endoscopy would have been negative too. All the Dr.'s I've ever seen agreed that the very solid success of the gluten-free diet to control a very ugly and serious case of "what looked like DH" was enough to diagnose!

So, negative test results are a distinct possibility - even blood tests.

[Blondie]

Incase anyone should care, the biopsy for both DH and Psoriasis came back negative, everything came back negative, dermatologist classified it as eczema.

Wow, im kinda shocked to hear that a doctor would diagnose based on dietary response, that would never happen here in Norway.

[Fiddle-Faddle]

Incase anyone should care, the biopsy for both DH and Psoriasis came back negative, everything came back negative, dermatologist classified it as eczema.

Wow, im kinda shocked to hear that a doctor would diagnose based on dietary response, that would never happen here in Norway.

Why is that?

With a peanut allergy, they don't wait until you die from anaphylactic shock before they diagnose you as allergic to peanuts--it you have a reaction from eating peanuts, and you DON'T have it when you eliminate peanuts from your diet, everyone knows you are allergic to peanuts. Nobody makes you eat more peanuts to see if you have a worse reaction.

[Blondie]

You can't apply logic to the way medical healthcare works here in norway. There was this Norwegian girl who got seriously ill at the age of 17, and after numerous tests she requested a small bowel biopsy from her doctor, he turned ehr down and said that coeliac was "not very likely", she continued being sick for 10 years, seriously sick,, she slept for like 17 hours per day, had to quit school, i don't remember her other symptoms but it was awefull, after trying for the glutenfree diet for 2 months she immidiatly saw improvement, then she tried 2 months with gluten and got worse again, she's now glutenfree, but no doctor will give her a diagnose, and even if they would she would never recieve any funding/economical help for her glutenfree diet (its really expencive in norway, people with "official coeliac" recieves funding every month) unless she had a positive small bowel biopsy.

That's how things work here, peanut allergy would probably be treated differently yes, seeing as there is no government funding for a peanut-free diet.

Might sound crazy but when I come to think of it, I was diagnosed with migrane based purely on the symptoms O.o

And for the record, doctors here often encourage patients to break the glutenfree diet for a 6 weeks minimum (3 months reconmended, 3 months!) glutenprovocation in order to perform a small bowel biospy

[nora-n]

Hi, I am in Norway too and just had a biopsy for DH and waiting for results. I did not have an outbreak then, as I am gluten-free.

I had this typical DH rash with blisters and burning (started in2003) and it went away after ging gluten-free so it must be gluten-related no matter what the results say.

I did read the antibodies can be detected for up to a year afterwards, but it makes sense that there will be negatives too since several people here say that the biopsy must be taken during an outbreak and from healthy skin not affected by the rash.

As of diagnosis by symptoms alone, my daughter got an official celiac diagnosis at Lovisenberg Sykehus with negative tests. But, her duodenum was abnormal to the wye when they took the biopsy so the doctor said they know that there are lots of not-good pathologists....She could choose if she wanted to go gluten-free and get a diagnosis. She has horrible symptoms on gluten so she chose the diagnosis and would of course had chosen to stay gluten-free of her own free will without a diagnosis too. The doctors here think that having to go gluten-free is a fate alomost as bad as death so they do not want to diagnose too many patients.......they also allow codex wheat starch here so that is is more palatable to celiacs. I cannot have any wheat starch either so that bothers me the most, that I cannot have store bought gluten-free items because celiacs here want wheat starch.

nora

[Dale D]

Hi, I am in Norway too and just had a biopsy for DH and waiting for results. I did not have an outbreak then, as I am gluten-free.

I had this typical DH rash with blisters and burning (started in2003) and it went away after ging gluten-free so it must be gluten-related no matter what the results say.

I did read the antibodies can be detected for up to a year afterwards, but it makes sense that there will be negatives too since several people here say that the biopsy must be taken during an outbreak and from healthy skin not affected by the rash.

As of diagnosis by symptoms alone, my daughter got an official celiac diagnosis at Lovisenberg Sykehus with negative tests. But, her duodenum was abnormal to the wye when they took the biopsy so the doctor said they know that there are lots of not-good pathologists....She could choose if she wanted to go gluten-free and get a diagnosis. She has horrible symptoms on gluten so she chose the diagnosis and would of course had chosen to stay gluten-free of her own free will without a diagnosis too. The doctors here think that having to go gluten-free is a fate alomost as bad as death so they do not want to diagnose too many patients.......they also allow codex wheat starch here so that is is more palatable to celiacs. I cannot have any wheat starch either so that bothers me the most, that I cannot have store bought gluten-free items because celiacs here want wheat starch.

nora

I too have/had DH. I had many biopsies by various doctors to no avail. Mostly because the took them at the site of the DH. Finally after 3 different doctors and 4 different dematologist, including Mayo Clinic, with no results to help for my DH my present dermatologist gave me soom Dapsone to try. After less than a week I started to see results. He put me on a gluten free diet and after a year my syptoms have all dissapeared and I have cut the Dapsone from 100 to 50 and hope to off the Dapsone in another year. When I asked him how much gluten I could tolerate, his answer was zero. My only problem is that I lost 18 lbs and need to get it back. Not having much luck.

[nora-n]

I am still waiting for the results. The biopsy was not taken at the site of active spots as the Iga would have been used up there. My only concern would be that I have been gluten-free for more than a year but I had an outbreak just before the biopsy because of an accident with frying fish fingers, I fried mine first and then the gluten ones and my frying pan was on the stove next to the gluten ones and some tiny oil drops jumped over to mine....so I had blisters behind my ears that itched much, just like I had before. I also had terrible ear eczema again.

I do not know if this was enough for the biopsy to be positive. I read here that it should be taken at the very time some spots are active, on healthy skin next to it. I did not read up on it before the biopsy, but I had read that the antibodies could be detected for up to a year so I got annoyed at my doctor for not sending me to a dermatologist because of the time factor. So I went private.

nora

[Franceen]

I never did manage to get positive results to either bloodwork or 2 skin biopsies. Yet, photos of my rash (all over my body) sent by my Dr to some Celiac specialists at Univ of Virginia yielded a positive diagnosis coupled with Gluten Free Diet success.

When I had the biopsy done I had been trying to be Gluten Free for about 9 months, but didn't know about malt flavoring, nor modified food starch and had improved a lot, but not completely. I finally had a trip to Hawaii where I simply could not eat gluten free so I ate up a storm (waffles, bagels, pancakes, etc) for about 4 days. I started breaking out again badly and that's when they did the biopsy. But I was also taking Dapsone (which I discontinued right after biopsy because of the side effects).

SO, all tests were negative. And I was told by UVA that I would have had to be eating a LOT of gluten for a minimum 3 months for the results to be positive. And they said that, on the other hand, the time it takes AFTER going gluten free for the IGA to disappear for the tests can be short........

I was not willing to gorge on gluten products for 3 months or more, and since I'm in the USA and don't REQUIRE a test for the diagnosis or for my insurance, my Dr. diagnosed me as "gluten intolerant (Celiac)" and I've been really gluten-free since and have not had a rash since (except a LITTLE bit when I accidentally get glutened in a restaurant - and now I get diarhea/gas immediately as well).

This past week, at a follow-up visit to my Dr - he said the current tests "leave something to be desired" still and false negative results are common.

[Barbara A]

What do they do to help treat this dematiitis? I was diagnoses with Celiac through blood test and endoscopy two months ago. I have been eating gluten free and doing better. Suddenly this blister rash appears on my hand!

Any suggestions for treatment?

Thanks

Barb