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My question was: is there anyone who has had a positive biopsy for DH, and
were negative for the bloodwork and intestinal biopsy for celiac? (I am
aware that anyone who has DH automatically has celiac) Thank you for all
your responses, many just wrote for me to summarize. Apparently, this is a
popular question!
The answer is yes, you can have dh and have negative antibodies in your
Bloodwork,and normal looking villi on an endoscopy!
One person said that she understands that most people with DH do NOT have
positive bloodwork, and they do not have flattened villi either. Her biopsy
was negative (for DH I believe) but everytime she eats gluten she gets sick
and covered with sores. "Am I celiac, absolutely!"
One person had a positive biopsy for DH, but her bloodwork and intestinal
biopsies were both normal. She follows the gluten free diet, and takes
sulfone, but had to stop for awhile because of complications.
Another person said that if the person has DH, they by definition have to
have CD. They could have negative bloodwork and in mild cases of DH, have
normal villi, but they would at least have lymphocyte infiltration, which
would improve on the gluten free diet. They also said to be sure and have
the physician do an immunoflourescence with the biopsy, and if granular IgA
deposits are found, then it is definitely positive for DH. The skin may
retain these IgA deposits for 5-10 years.
One person had a positive biopsy for DH, positive bloodwork, but her villi
were not flattened, they were clumped. They considered this a positive
finding for CD.
One person had DH symptoms for 30 years without any digestive troubles
associated with Celiac. Then they began having trouble and losing weight.
The intestinal biopsy at that time showed flattened villi.
One person read that approximately 85% of DH sufferers also have flattened
villi, or go on to develop it later. The damage is often "spotty", so many
times it is missed during biopsy. (That is why they recommend 8-10 biopsies)
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