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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 knitty kitty · Posted

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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