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Dh Without Celiac Gene?

sunshinen

By sunshinen
in Dermatitis Herpetiformis

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sunshinen Apprentice
sunshinen
Posted

Does anyone who does not have a major celiac gene have confirmed DH? I have a friend who is gluten "sensitive" but does not have the classic celiac gene. He recently cheated and three days later woke up with bumps that look like little bug bites with a water blister at the head. (The genetic test looked only for the classic "celiac" genes and not any for those for gluten intolerance.) I'm just wondering if DH is even a possibility to consider.

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jparsick84 Rookie
jparsick84
Posted
Does anyone who does not have a major celiac gene have confirmed DH? I have a friend who is gluten "sensitive" but does not have the classic celiac gene. He recently cheated and three days later woke up with bumps that look like little bug bites with a water blister at the head. (The genetic test looked only for the classic "celiac" genes and not any for those for gluten intolerance.) I'm just wondering if DH is even a possibility to consider.

DH usually shows up faster - my DH pops up within 30 minutes (which is handy, as I don't eat too much of the bad stuff!) I was told by my doctor that it is possible to have DH and not have the Celiac gene. I was diagnosed purely through the skin biopsy, nothing internal, and since I've been gluten-free for almost a year now, they don't want to go messing with my diet.

Also, DH is usually symmetrical - if it pops up on one elbow, it doesn't take long to pop up on the other. If it would make him feel better knowing for sure, he should make an appointment with a dermatologist and eat some wheat before he goes in to make sure he will be nice and rashy when he goes to see the doctor.

ravenwoodglass Mentor
ravenwoodglass
Posted

Yep. Me. I had it severely for many long miserable years. In my childhood I was told I had poison ivy 'in my blood stream' to explain why I would be covered summer and winter. After I went gluten free I would get the kind of breakouts you describe. At first they would appear in hours but after a couple of years gluten-free it now takes me about 3 to 4 days to get the one or two little blisters I now get. After folks have been gluten-free for a bit the antibodies leave the skin and the reaction can take longer to show up.

Lisa16 Collaborator
Lisa16
Posted

Me too-- I am DQ6 and DQ7. I have confirmed DH and it pops up within an hour, I would say, of getting glutened. I can pop up anywhere-- if it is on an arm, say, I can actually watch it form.

tom Contributor
tom
Posted
Does anyone who does not have a major celiac gene have confirmed DH?

Since the research has a ways to go regarding genetic sequences, the answer must be yes.

(And of course, the above posts show same)

Just last month, a study was published saying they'd found 7 more genetic "areas of interest" for celiac disease.

Lisa16 Collaborator
Lisa16
Posted

It is also interesting to know that many people who are diagnosed as celiac (via biopsy or dietary response or bloodwork) do not get the genetic test done and do not know what their genes are. If more people who are sick got the test, I think the ideas about the DQ2 and DQ8 genes, as well as the reported percentages, would change drastically.

Maybe your friend can get a biopsy with next rash and therefore a diagnosis. I was told that DH is considered a definitive celiac diagnosis.

Lisa

nora-n Rookie
nora-n
Posted

I just read at the www.thefooddoc.com site that some labs miss the celiac genes because they do not test the apha chains, thus missing the half DQ2 genes that some have there. He lists which labs do the whole test.

nora

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      By fritz2 · Posted

      Well, as much pain as gluten has caused in the past, there's no way in hell I'm taking gluten on purpose.  What is NCGS?  And are there any remedies to quickly get over the swollen joints? My joints are swollen and hot to the touch and hurt.  For about two weeks they were too painful to even think about using them.  Six weeks later, I still can barely use my hands.  I struggle to get a bottle cap unscrewed they hurt so badly.  Edema in my legs and the knees hurt to walk.  And that was probably a minor exposure as the wheat was listed towards the end of the "contains" list in very fine print we couldn't read without a magnifying glass.
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