Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Any Chance This Is Dh? And Biopsy Question


davenbacker

Recommended Posts

davenbacker Rookie

Hi! I'm new to the forum; just posted my story here:

https://www.celiac.com/forums/topic/112414-microscopic-colitis-sensitivity-no-celiac-diagnosis/

 

Background: I don't have any official diagnosis...  but I think I have celiac and possibly DH. Starting in my late teens, I had itchy bumps all over my back. Mostly higher up, but some all the way down on my buttocks. I always thought they were acne, because I could "pop" them (mostly getting clear fluid). But they itched like crazy (I'd have trouble leaving them alone in class or at work), hurt (kind of a burning feeling almost) to scratch or pop. And they seem to take forever to heal; scabbing up and scarring.

 

When I went gluten-free, the itchy bumps mostly stopped. I still get some when I slip up, and I still get some that are just not as itchy or widespread. They're still taking forever to heal. I don't really have any active "bumps", but I thought I'd send a picture anyway to see if the DH experts in this forum could tell me if it might plausibly be (mild) DH? Here's a picture of part of my back showing the rash/acne/whatever:

Open Original Shared Link

Another question...  I would still love to have a formal diagnosis, to make it easier to explain to people (including my family). Is it important for a DH biopsy to be consuming significant gluten for a long period of time? Or...  if I have another slip up and develop some more active bumps, would a dermatologist have a chance of diagnosing if I got to them quickly enough?

 

Thanks for your help!

-Dave

 


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

I know you would really like to have a formal dx but the odds against that are pretty astronomical unless you do a gluten challenge. Yes, you have to be consuming gluten for a dh biopsy just like with the celiac blood panel. Sorry. There have been no studies that I have seen where someone with dh who was gluten free for a long time & got cc'd & ran to the derm & got a dh biopsy & it turned up positive. EVEN if what you propose did happen & you ran to the derm real quick, you're going to play hell getting a derm to do a dh biopsy. They'll say.....

it's scabies

it's psoriasis

it's eczema

it's common dermatitis

it's bed bugs

it's poison ivy

it's poison oak

& they will prescribe you a plethora of creams & ointments for years as they tell you it's the next dx in the lines I posted above. Seen it happen a million times. And EVEN if they didn't say all that & they DID do a dh biopsy -- 95% of the time they do it ON a lesion which is the WRONG way to do it. 

Yes, I did look at your photo and read your linked post. It might be dh & then again it might not. it's just not something one can really say from looking at a photo. I'm sorry. Secondly, there are many skin rashes & problems associated with celiac disease & it could possibly be any of them.

 

Here's the thing Dave ~~~ you're gluten free & feel better that way & issues are resolving for you. My advice would be to treat yourself as if you have a dx of celiac disease & never look back UNLESS you are willing to do a gluten challenge.

As to your kids, how about letting them have gluten only at school? You could even put it in their lunch you pack. You can put individually packaged packs of crackers or cookies & allow them to eat that at school. If they begin showing symptoms of celiac disease then you can go get them tested when that happens.

davenbacker Rookie

Thanks, squirmingitch, for the hard truth. I had the vain hope of getting a diagnosis without making myself sick. But at least it's easy for me to stick to a careful diet, since I feel pretty bad when I mess up. The last attempt at a gluten challenge wasn't nearly long enough and did a lot of harm, so I don't intend to do that again.

As for the kids...  that's something I'm going to need to sort out with my wife eventually. I want to test them on it sooner or later, but they're young enough that I'm content to leave them gluten-free, since it doesn't really do any harm, and they're all still pretty little and developing so much. Once we get to sleepovers and such, it'll be more important so that they don't have to deal with the social problems.

squirmingitch Veteran

You're welcome Dave. 

Yes, you & the wife will figure out what to do with the kids.

Please be sure & read the Newbie 101 in the coping section so you really know how to protect yourself.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,570
    • Most Online (within 30 mins)
      7,748

    SilReg
    Newest Member
    SilReg
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This varies a lot from person to person. I include foods that are not certified gluten-free but are labelled "gluten-free", while super sensitive people only use certified gluten-free. Both types of products have been found to contain gluten, so there are no guarantees either way: It you are in the super sensitive group, eating a whole foods based diet where you prepare everything is the safest bet, but it's also difficult. Eating out is the the most risky, even if a restaurant has a gluten-free menu. I also include items that are naturally gluten-free, for example refried beans, tuna, pasta sauces, salsas, etc., which have a low overall risk of contamination.
    • Scott Adams
      I avoid turmeric now because I'm on low dose aspirin, but used to use this one: https://www.amazon.com/dp/B08HYBN4DJ My recipes always vary according to what I have on hand, but my base is a frozen berry mix from Trader Joe's: https://www.traderjoes.com/home/products/pdp/fruits-greens-smoothie-blend-075603 In the warmer months I include herbs from my garden like Italian parsley and basil. I add almond milk as well. 
    • KimMS
      Thank you! This is very helpful. Quick followup: what is your recommendation re: gluten-free prepared foods (labeled gluten-free or certified gluten-free) during this time of being more strict about eating gluten-free? Is it necessary to eat only whole foods prepared at home, or is it safe to include prepared / packaged foods in her diet (I'm thinking particularly of snack foods)?
    • xxnonamexx
      Is blending same as cold press? Is there any juice recipe you tried that you feel helped like the ginger turmeric? Is there a brand turmeric powder you used etc? I used Aloe vera years ago but the taste is hard to get down. What are your go to juices you made?
    • Scott Adams
      Your genetic test results confirm that you carry the highest-risk markers for celiac disease, specifically the HLA-DQ2 haplotype (while being negative for HLA-DQ8). The fact that both HLA-DQA1*05 and HLA-DQB1*0201 appear twice means you inherited identical copies from each parent, making you homozygous for these genes. This double dose of the DQ2.5 haplotype is significant because it indicates an even stronger genetic predisposition to celiac disease compared to those who only inherit one copy. Research suggests that people with this homozygous pattern may have a higher likelihood of developing the disease, potentially more severe immune responses to gluten, and a stronger association with dermatitis herpetiformis (which aligns with your diagnosis). While this genetic profile doesn’t guarantee worse symptoms, it does reinforce why strict gluten avoidance is critical for you. Since you’re already diagnosed, the main takeaway is that your results explain your biological susceptibility—no further genetic counseling is needed unless you have family planning questions. The repeating variants simply mean both parents passed you the same high-risk alleles, which is why your body reacts so strongly to gluten. Ultimately, your diagnosis and management remain the same, but this insight helps underscore the importance of lifelong dietary diligence.
×
×
  • Create New...