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carlaj357

Help!negative Test Blood Test Results-but Have Dh?

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I am so very confused and frustrated! Just got back my blood test results to see if I am gluten sensitive and they came back negative. However, I have had a confirmed diagnosis of Dermatitis Herpetiformis-over 10 years ago. I thought that if you have DH, then you should have a positive blood test as well, right??? I have tried a no gluten diet for 3 weeks now and have had great results-hives have gone away, DH has gotten better, stomach is better, etc. I had been off gluten for about 1 1/2 weeks before the blood test-but the Dr. said that would not matter.

How can I have a negative blood test, but still have DH? Has that happened to anyone else?

Thanks!

Carla in GA

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Yes, you can have false negative blood tests, they are quite common. Being gluten-free even for that short time will effect it.

You have a firm DH diagnosis, that is all you need. You are celiac and are one of us!

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Here is some info I found after my own neg blood test:

"if a person stops eating foods with gluten before being tested, the results may be negative for Celiac Syndrome even if Celiac Syndrome is actually present. About 2% of people with an IgA deficiency have false-negative results.

The lab that does the testing does matter. Some labs have "normal" ranges set so high that practically no one tests positive even with biopsy-provable Celiac Disease. Remember, antibodies present means there already is tissue damage. People with levels just above baseline seem to respond to a gluten-free diet."

Dr Rima, http://www.celiacsyndrome.com/index.php?id=117

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I am so very confused and frustrated! Just got back my blood test results to see if I am gluten sensitive and they came back negative. However, I have had a confirmed diagnosis of Dermatitis Herpetiformis-over 10 years ago. I thought that if you have DH, then you should have a positive blood test as well, right??? I have tried a no gluten diet for 3 weeks now and have had great results-hives have gone away, DH has gotten better, stomach is better, etc. I had been off gluten for about 1 1/2 weeks before the blood test-but the Dr. said that would not matter.

How can I have a negative blood test, but still have DH? Has that happened to anyone else?

Thanks!

Carla in GA

Hi! I am new to the group myself. I have been on a gluten free diet for about 6 weeks. My doctor told me to try that first- she said something about there are many levels of Celiac disease and they don't all show up in a blood test. I really didn't think it would make a difference- but it has. I still have problems on ocassion, but not like before. I also found out I had an aunt ( who passed away several years ago and who I really didn't know) that had the disease so it would make more sense. I feel kinda bad because I didn't get a real diagnosis- but can you argue with results? What does anyone else think? Thanks for the input!

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Guest j_mommy

Dh=celiac. That is all you need. Also some have neg blood work but positive biopsies and sometimes the other way around.

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    Oh yes, it could, although to be honest I never got myself so wet with sweat that it would have been a serious situation.  However, I can remember one time when I got caught in a cloudburst while going to my car in a large parking lot, though, and got soaked to the skin, and of course had to wear those soaking-wet clothes while I drove the 45 minutes it took me to get home --- I will NEVER forgot the misery and agony of that drive!  I could just barely keep the car under control, in fact.
    Thanks for your response, Squirmingitch, but I have to almost laugh, as at this point I am not really stressing over these questions at all --- just curious.  I have always been an insatiable question-asker, so please don't take my frequent questions as a sign of my obsessing over celiac disease or DH.  Yeah, admittedly I was rather stressed out for a couple of days two weeks  ago or so, but I am significantly settled down now, even while negotiating the nutritional maze of trying to manage two
Water?! That's… unreasonably inconvenient. Did it happen with sweat?
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