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Dh Without Celiac Gene?


sunshinen

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sunshinen Apprentice

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
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

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

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
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

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

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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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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