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How Much Dh Needed For A Biopsy To Confirm?

desccc

By desccc
in Dermatitis Herpetiformis

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desccc Rookie
desccc
Posted

I have tried to "gluten" my d tonight with giving her pasta at dinner time...within 2 hrs "what looks to me like" DH popped out on her knees, mostly right knee. I gave her a bagel before bedtime and will probably give her another bagel for breakfast. The derm said to come in the day it flarses..and am wondering if it's mild. It looks like tiny seeds under the skin and red dots..and it's itchy. I don't want to have it so mild that he can't get a good biopsy..should she be glutened more before taking her in?

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ravenwoodglass Mentor
ravenwoodglass
Posted

I would go ahead and get her in there. Make sure you watch while he biopsies to make sure he is not biopsing the lesions themselves.

desccc Rookie
desccc
Posted
  • Author

HI Ravenwood,

Well, he couldn't see her, but his PA saw her this morn. She thinks it's not DH, she had one small lesion this morn and she thought it was not large enough to determine. I did ask about the skin adjacent to it, she said "Well, it's so small I'd be getting the lesion and the skin around it"..and she said she knew about doing the skin adjacent to the lesion.

She said with DH it's not transient like in my d's case..she doesn't think it is. Everytime my d eats pasta she will get these small red tiny bumps..the one today from last night is crusted over and they do not stay on skin. We are going to give her more gluten and if there is bigger ones that come on we will go back, but I am wanting to make sure when we do it, it's big enough.

Why is that all these years she gets these on her knees from pasta? There not huge but red tiny and seedy like and they do go away. Am I wasting my time?

I already know she has gluten allergy and her nose is already congested big time today..pasta always does this and bagel she had today. Her IgG was a big score and we still need to do the endomysial test.

The PA said it could be a hive..trust me my d has had plenty of hives in past and it looks nothing like this..they are welts and never have been on knees. Both my kids get these lesions on knees from pasta even though thye are tiny ones.

The PA said DH is not transient, doesn't come and go and stays, so that is why she thinks it's not DH. SHe said she'd be happy to do biopsy though when she has a bigger lesion.

ravenwoodglass Mentor
ravenwoodglass
Posted

Actually DH can come and go. It depends on how many antibodies have built up under the skin. It does seem it is rather obvious that these are associated with gluten injestion though. I agree with you that those do not sound at all like hives. The fact that they tiny and they are blisters is a good indication in my opinion that these are DH, however you have to decide in light of the fact that you know that she is not tolerating gluten well how much gluten and for how long you want to gluten her to get a full scale outbreak. If she has already had a positve blood test that is pretty conclusive in itself.

One thing you have to keep in mind is that doctors do not like to diagnose folks with celiac. They consider it the end of the world rather than the beginning of a new more healthy longer life. Hopefully she will be done with testing soon and can begin healing.

desccc Rookie
desccc
Posted
  • Author

Thanks ravenwood,

What is interesting about this PA is that she said that her adult d has celiac so she has a personal interest in it. I picked her up from school and she told me that she was scratching more, they are so tiny, I can see how the PA didn't think it would be fully conclusive for DH. I wish we had an expert in this and celiac in our area.

We still need to do the endomysial test next week when she sees ped. I read this needs to be done by a lab tech who is familiar with this test..well obviously they need to know what they are doing, but are there any labs that you know of that can do a lot of the endomysial tests?

The unique situation we have is that she had been treated for eating disorder since May. I've been responsible for refeeding her and we've been doing digestive enyzmes with meals for a good while during that time.

BUT, in the past month we've been supplementing the Gluten Enzyme, inositol, extra B6 and Zinc, a lot of B6 and zinc. And we are using a MindLinx probiotic. I'd say in this past month we've seen more physical signs of wt gain and the scale is showing it too with no extra cals than normal.

I feel that she definitely has a malabsorption problem and she has had food allergies all of her life. I think the ped is not wanting to diagnose celiac either, because she may be fearful that she will get discouraged with a new diet and this will cause a relapse.

The other side is that we know she is gluten allergic/intolerant. Her nose is very congested from the pasta and bagels right now.

I am going to make the decision after the endomysial test and most likely pull the gluten.

Do you think genetic testing should be done for her?

Thanks so much

nora-n Rookie
nora-n
Posted

I have these tiny blisters too. And they come and go too.

I think the mindlinx stuff breaks down gluten and maybe it could make diagnosing celiac a little bit more difficult. Autists on Gluten-free Casein-free deit use it I think.

The endomysium test is just a blodo test, but the lab has to look at it and fins IgA deposits with the eye, jsut like in the DH biopsy. The IgA lights up and is flourescent. The Ttg test measures just about teh same thing, and is automated, and here in Europe the Ttg test is the only one they do anymore in most places.

You really have to eat a lot of gluten every day for the ttg test to be positive since the set point for positive is set very high, so only severe villi samage will correspond with a positive ttg test. There is an IgA version and a IgG version.

nora

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