Negative Blood Work And Biopsy

[LoriC]

I was diagnosed with DH back in August of 07 by a dermatologist only by sight no biopsy , negative blood work done by GI dr. I went to another dermatologist 2weeks ago, she did a biopsy, that came back negative, it said contact dermatitis...so now she will do allergy patch testing. I'm confused as to what i should do? should i go back eating gluten? i've had "some" positive results with the diet and the dapsone..but my rash never completely went away, that is why i went for a second opinion. any suggestions would be helpful, thank you

[Franceen]

A few things: You CAN have DH and still get negative blood/biopsy (I was diagnosed by Dapsone and gluten-free diet success by both GI and Dermatologist in spite of all negative tests which was attributed to about 2 months of gluten-free diet when tests were done).

DH can take MONTHS to go away after a 100% gluten-free diet (which is hard to accomplish at first). Even though you THINK you are gluten-free, you probably are not when you first start. There is a big education and a lot of revelations about food ingredients that takes a lot of time.

And, lastly, you could have BOTH DH and atopic/contact dermatitis. Since scratching ANY skin condition will cause the condition to worsen and spread, the contact dermatitis could be secondary to the DH - but NOT the reverse.

The best way to tell is to get off all drugs (Dapsone is dangerous, I almost died from it) and then start down the path of a 100% gluten-free diet and see if the rash goes away - and you will need to give it several months. It took mine a good 6 months to go away and I have never been 100% DH free since inadvertant glutening is a fact of life, it seems - especially when you have to eat out a lot and travel a lot for ones job! If you see absolutely NO improvement over the first month or so, then I guess you would have to suspect that it is something else.

By the way, my understanding was that Dapsone doesn't help any skin conditions other than leprosy and DH! (It was developed to cure leprosy).

[LoriC]

Thank you Franceen for your feedback, I think i will stay gluten free for now, but let her do the allergy patch testing. I took myself off the dapsone back in Jan. I didn't see any change in the rash, meaning, i didn't get worse. I had told my previous dr. for weeks that the dapsone was making me to tired and terrible feeling, he didn't want to hear it..so that is the reason for the second opinion dr. every dr. i had told about the DH and how it was diagnosed said, " no biopsy?" my GI dr. said what you said, you can get negative results and still be a celiac, if the diet is working...stay on it..but i think its mental to me? Like I keep asking myself..am i? or not? is that normal to feel that way?

[Franceen]

Yes, perfectly normal! Everytime I'm really hungry and a box of Dunkin Doughnuts appears at the office, I say, "well, maybe I'm NOT Celiac.........and if not, I could have that doughnut!..." but I never cave into that craving, just have to distract myself.

It IS frustrating to never get a positive test of any kind and so that's why I stopped trying so hard. Considering they told me I'd have to eat a LOT of gluten for at least 3 - 6 weeks before a good test could occur and I don't want that rash back as bad as I had it ever again! I do worry that someday I'll be in the hospital for something like an emergency and they'll say "you have to eat a regular diet because there is no evidence that you have celiac!" and I'll be glutened bigtime.

But, I'm really hoping that they approve the drug they are testing - Zonulin or AT-1001 - at U of MD. See link to Philadelphia News clip. Notice in the very beginning they flash a quick photo of a person with DH!! Open Original Shared Link

And it is also possible that you don't have visible intestinal damage (yet) - so an endoscopy will also come back negative and since the medical profession calls that the "gold standard", once you have a negative with that, all Dr's will say that you don't have celiac which MAY NOT BE TRUE!!

Good luck, keep up the faith (it's only FOOD!), and realize you are not the first or last to be frustrated by this disease and the medical profession!

[chatycady]

Thanks Franceen! That was a great reply. You are right it is only "food" and I am not the only one frustrated by Dr's! I needed to read that tonght.

Thanks a bunch.