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I Need Some Help - Very Frustrating Doc Appt

macocha

By macocha
in Dermatitis Herpetiformis

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macocha Contributor
macocha
Posted

My daughter has fructose malabsorption. Just a tidbit of info.

she has been to an allergist and it was found she has a dustmite allergy. She also has horrible rashes inside her arms that he gave her an ointment for. it helps maybe a small bit, but not a lot. You can see where the outline of the ointment goes because it is a lot paler.

Now the rash has gone to her eye lids. It stings and hurts and is itchy. This new doctor we saw today says it is excema. Sigh. I just don't know anymore. I asked if we could test for DH and he didn't know what it was until I told him the long name and he doesn't think that it is and said in his 15 years he hasn't heard of how to test it. I mentioned biopsy. I believe (correct me if I am wrong) the biopsy will show if it is excema or that other one psorisis (sp?) but what tests are there to see if DH is celiac related? her blood tests for celiac are negative (her brother has celiac).

then he went on to say "I don't want to burst your bubble" on the whole dietary issues and FM, etc. I just said you didn't burst my bubble, I have my gut feelings and it hasn't steered me wrong. I can tell when she eats things she isn't supposed to and know that it isn't imaginary what her issue is. Her breath test was really high and she has had two SIBO infections and it is in fact an issue she is dealing with with her gut.

~banghead~ what a horrible experience. I got a referral to the dermatologist, but what do I take with me to validate my concerns or for the testing I want done? What tests do I want? Any links for research issues for DH?

thanks!

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kareng Grand Master
kareng
Posted

This is from the University of Chicago Celiac Center questions sections:

NOTE: Dermatitis Herpetiformis (also known as DH, the skin version of celiac disease) is best

diagnosed with a skin biopsy, that is sufficient for diagnosis. Patients with DH may in fact have

normal serum tTG and occasionally even normal intestinal biopsy; yet they invariably need a

strict gluten‐free diet, just like every other celiac patient.

Look at this website. It has pictures.

Open Original Shared Link

Also from Columbia Unversity Open Original Shared Link

What is dermatitis herpetiformis (DH)?

DH is an intensely itchy vesicular rash occurring anywhere on the body, especially on the extensor surfaces (knees and elbows) and the scalp. Patients tend to experience the rash in the same area, for example on their hands, in their scalp or on the buttocks. Virtually 100% of patients with DH have celiac disease, though the intestinal lesion is usually milder than most patients who have predominantly gastrointestinal complaints. The lesions of DH are very sensitive to even the ingestion of small amounts of gluten. Other dietary factors, for example iodine, may exacerbate the rash or prevent its healing. The rash is however dependant on the ingestion of gluten. While Dapsone will control the skin lesions of DH, a gluten-free diet allows Dapsone to be discontinued, healing of the intestine and reduction in the risk of the development of lymphoma that is increased in patients with DH.

mushroom Proficient
mushroom
Posted

Do be sure that if the dermatologist biopsies for DH that he takes the sample from tissue immediately adjacent to the lesion, not of the lesion itself, because the antibodies will be found in the adjacent tissue. Incredibly, a lot of dermatologists do not know to do this.

Cypressmyst Explorer
Cypressmyst
Posted

Why do you need a diagnosis? Just curious. You could just have her be gluten-free for a few weeks and when it clears up you'll have your answer. :)

It has got to be tough dealing with the gluten-free life with two kids though. You have my respect for sure!

macocha Contributor
macocha
Posted
  • Author

cypress - mainly because her diet is already horrid and if I add the gluten-free it will be more limited. And, if I can get the diagnosis of celiac then maybe we can start adding in the FM restrictions and see if she can handle it now.

I don't wish fructose malabsorption on anyone. It is awful and has had me in tears many of nights - moreso than the celiac diet. that is a breeze compared to hers.

so, if I get the diagnosis - in my mind it would be easier (in reality maybe, maybe not). does that make sense?

Cypressmyst Explorer
Cypressmyst
Posted

Absolutely makes sense. You do what you have to to stay sane. ;) Have you found that FM and Gluten are related in your research? I don't know too much about FM.

Thanks!

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