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Okay Now Im Really Confused...just When I Thought I Couldn't Get Any More Confused!

jodikris

By jodikris
in Dermatitis Herpetiformis

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jodikris Apprentice
jodikris
Posted

I just got a fax from my dermatologist at my request to SEE my biopsy results...ONE test came back positive ONE came back negative for DH....is this possible>!>!>!>!>!

So they are acting like I am crazy to be concerned about this...lets examine this...I am having to change my ENTIRE LIFE for a disease no one can tell me for sure that I have!! WTF!!!!!!!

ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Someone tell me its not me!

I have a terrible rash on my: knees, elbows, back, waist and hair/chin line

I react to Dapsome

I have stomach problems

my you know what sticks to the bowl....

SO do I have DH or do I not have it? Do I have celiac disease or do I not have it?!

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mommida Enthusiast
mommida
Posted

What does your gut tell you? Run the tests over, have the endo. with biopsy, or try the diet.

Sounds like you have the same kind of luck I do.

Laura

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  • 1 month later...
Dlapham celiac & DH Newbie
Dlapham celiac & DH
Posted
I just got a fax from my dermatologist at my request to SEE my biopsy results...ONE test came back positive ONE came back negative for DH....is this possible>!>!>!>!>!

So they are acting like I am crazy to be concerned about this...lets examine this...I am having to change my ENTIRE LIFE for a disease no one can tell me for sure that I have!! WTF!!!!!!!

ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Someone tell me its not me!

I have a terrible rash on my: knees, elbows, back, waist and hair/chin line

I react to Dapsome

I have stomach problems

my you know what sticks to the bowl....

SO do I have DH or do I not have it? Do I have celiac disease or do I not have it?!

Your symptoms are correct for c/d--d/h. If you have d/h you DO have c/d. The d/h coverage area for me was generally the same as you outlined. It is hard to hear and accept that one has a disease like c/d and d/h. I was big time angry. But after the gluten-free diet and the improvement it made in my over all health, I am now seeing it as a blessing, and thank God for helping me to find out what has caused me so many problems over the last 58 years. I can now actually start thinking that I may actually make it to my 80s.

Some times the tests are not conclusive. I had some positive and one skin biopsy that was none conclusive. ( that was in the middle 80's) But my symptoms worsened until October 2005 when I finally went gluten-free again and this time with better information. Now everything is better. Go with what your gut tells you, and thank God for helping you to find the problem.

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Ursa Major Collaborator
Ursa Major
Posted

I guess that one skin area just was wrong for a biopsy. But if one definitely is positive, then you obviously have it. They take biopsies from more than one area to examine, just to make sure. If both were negative, you could question if you actually have DH (and even then it could be a false negative). But if one is positive, that's enough for a diagnosis.

So, I say you'd better go on the gluten free diet, and see what will happen! If you feel much better, and your stomach and bowel symptoms improve, you have your answer. The rash can take up to two years to completely clear up, unfortunately. But my skin improved dramatically within a short time on the gluten-free diet. Its not perfect, but at least my skin looks so much better, especially on my face!

And doctors are often so ignorant, what do they know. You have your answer. Act on it and ignore them.

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frenchiemama Collaborator
frenchiemama
Posted

I don't know much about the lab work, but given your symptoms and the fact that you had one positive I would say that you probably have it.

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colorado kathy Newbie
colorado kathy
Posted

I had one biopsy that was "inconclusive" and another one about 6 months later that was positive. At that time I was told the gluten-free diet would take 7 years before it would work and even then, it was questionable if it would help at all. I felt like you did - I thought I couldn't change my lifestyle for the rest of my life and I was pretty angry. So I didn't do anything for 5 years. I've now had positive bloodwork and I went gluten-free 8 weeks ago. I am amazed at how quickly I saw results. By the end of the first week, the intensity of the itching had decreased and Hallelujah! I began to sleep better (this is after 6 years of terrible sleep). Here I am 8 weeks later and my skin is so much clearer (not completely gone, but an enormous change), I don't have the itching, my GI system is in much better shape and my mood has improved dramatically. It takes a lot of reading to figure out how to do this lifestyle change correctly and I'm probably still making mistakes unintentionally, but that is why I read this site as much as I can - it is so helpful. Good luck to you! It is so worth it!

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jerseyangel Proficient
jerseyangel
Posted

Wow--7 years? Really?

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colorado kathy Newbie
colorado kathy
Posted
Wow--7 years? Really?

Yes, that's what I was told. More misinformation! I'm glad it wasn't true.

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