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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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Celiac.com Sponsor (A8):

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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!


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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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


~Ill for 5 years with progressive symptoms: anxiety, brain fog, joint pain, "D", and the noisiest stomach you've ever heard, and a lovely itchy rash on my buttocks, scalp, and sometimes thighs. ~ Family history of Celiac disease (Uncle, cousins, grandmother) ~ Blood work showed some antibodies but not enough to be dx celiac ~ Dq7 & Dq4. ~ I can't call myself Celiac but I know gluten is bad for my body.

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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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