Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dh Without Celiac Gene?


sunshinen

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,565
    • Most Online (within 30 mins)
      7,748

    Gma Marsh
    Newest Member
    Gma Marsh
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.