Dermatitis Herpetiformis?

Question

Help!!! I haven’t been diagnosed with CD yet, but I’ve been doing my research and it’s the ONLY thing that makes sense. I live in a fairly remote area and I don’t feel like my dr is giving me proper treatment or advice. Please tell me your thoughts. I already have an autoimmune disease, Vitiligo, and I’ve had eczema my whole life. I’ve noticed over the years that I occasionally get an eczema outbreak after eating wheat but it’s always been tolerable. Until a couple months ago. I started breaking out in weird rashes. My dr says it’s not Shingles and he honestly doesn’t know what this rash is, or the ones I’ve had prior. So he ordered a biopsy. I’m still waiting on the results.
But I’ve been eating gluten free for about a week now and I’ve noticed my symptoms are improving. Skin is definitely getting better.
It all started with bloating. I’ve been bloated for over a month (even after eating GF for a week). The doctor ordered an ultrasound. Still waiting on that. The biggest concern is that I have been having quite a bit of pain in my left side, along with my under arm, near my left breast. My lymp nodes are a little swollen but I didn’t test positive for a UTI or kidney infection. Dr. doesn’t know why I was having the pain in my side and under arm and on top of the ultrasound he ordered a mammogram. I can’t help but think we’re on the wrong track here. Does celiac disease cause pain like this? Or is it mainly in the stomach.
Also does this rash look like Dermatitis Herpetiformis? It started off just red and inflamed, then developed little scabs. (The black spot on the second picture is from the biopsy and stitch). If this is DH, would it be likely that I have CD? Where do I go from here? I’m so desperate!!


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Nikki 3 years 16 Answers 621 views 0

Answers ( 16 )

  1. Can you get yourself to a dermatologist instead of a regular doc?? I have no idea what DH looks like but when I was reading about it, it said that it can ooze and cause scabs. That looks horribly painful. I am sorry!! I hope you get answers soon. When do you get your biopsy back? Again, I am not a medical professional but if it is DH I do believe that means you have CD. They most likely will put you in touch with a GI doctor who will run tests to confirm.

  2. I have dermatitis herpetiformis. Key questions, does it itch? And where is the rash? DH always is twinning, where it is on one side, it will be same on other. Usually happens elbows, knees, stomach, buttocks, but can occur anywhere even face and hair. I found when I went gluten free the worst of the itch subsided. The rash is bumps that can have blister.

  3. If you own animals, get checked for ring worm. The circle pattern is the give away. It has to be checked with a blue light.

  4. Looks like early stage of shingles

  5. Try cortisone cream for itching. Prescription strength is called betamethazone

  6. I’m interested in what the biopsy results are. It looks like shingles to me. I had it about a year and a half ago under my right breast, and it hurt all the way around my rib cage and into my armpit. Sometimes I still have nerve pain in that area. I’m 36 and I asked for the shingles vaccine 2 years ago but was turned down for being “too young to worry about it”. Mmhmm, thanks a lot, docs.

  7. Julia described DH fairly well. If it’s severely itching/burning and open blisters, that’s more like DH than eczema, though untreated eczema can progress to that.

    This issue is that most dermatologists do not know how to do a proper DH biopsy. Plus the biopsy should be done within 48 hours of outbreak. Otherwise the tissues break down too significantly to get an accurate result. Not saying you couldn’t get a positive, but it’s possible for that biopsy to be a false negative if it wasn’t done properly or soon enough.

    If it is positive for DH, then you have celiac. Technically no further testing is required. DH is the skin manifestation of celiac.

    If you are thinking you are celiac, I recommend having the blood work done as well.

    Celiac blood tests

    Minimum screen:
    Total Serum IgA
    Tissue Transglutaminase Antibodies IgA (ttg-IgA)

    Additional tests:
    Tissue transglutiminase antibodies IgG (ttg-IgG)
    IgA Endomysial antibody (EMA)
    Deamidated gliadin peptide (DGP IgA and DGP IgG)
    Genetic test (although you can have the gene but not have celiac, this can be used as a piece to the puzzle when necessary or if other results are questionable)

  8. BTW, that’s not a DH biopsy. DH biopsies take a sample next to the rash, not from the rash itself.

    This link has info.
    https://celiac.org/…/understa…/dermatitis-herpetiformis/

  9. shingles I had them very itchy and spreads you need medicine to get ride of them.

  10. Pain on your left side could also be your gallbladder. I had severe pain that felt like under the ribs and armpit.Lower left sided pain to your belly button is your appendix. If Lymphnodes are swollen, I might agree with the shingles idea. You do have a lot going on, Dr might be testing the bigger things first and narrowing it down. Unfortunately, you suffer until then. Keep us informed….

  11. I’d find a different Dr. That could be a bunch of things. With the tenderness under your arm, I definitely get a mammogram. Have him do a blood draw as well. That’s an easy and cheaper way to check if celiac is a possibility. If it comes back positive, you have an answer. If not, you can go further.

  12. Might be shingles I’ve got it at the moment and it came up just like your picture if it’s only on one side get checked out

  13. I’d slap a bag of frozen peas on it right away. A good chill stops a bunch of inflammatory skin issues for me. If you think it’s shingles I’d recommend a lysine supplement as well.

  14. That’s not what my DH looks like. I have celiac too. But your other symptoms do seem like they could be related. Good thing you had a biopsy. I would continue to explore answers with your doctor. You can continue doing research on your own, but idk my gut tells me you should stick with your doctor on this. Hope you get answers soon.

  15. That rash! Since you already have autoimmune, I have many too but I found out after nearly two years rash that it was DH, dermatitis herpformis I believe it’s called. 1 percent of folks with celiac have it, it’s autoimmune too. Two dermatologists missed it and rheumy and primary. They treated me for scabies multiple times. Went gluten free and healing started in three days!

  16. I was told 90% of those that have DH, have at least some celiac issues.That’s how I got diagnosed, 5 doctors and 7 doctor-“specialists” visits later finally I was told what was up.by an “after hours emergency care clinic doctor”. I do not believe that young lady has DH because DH is more patchy and “rashy” looking than that. Celiac disease symptoms are all over the spectrum & that’s what makes it so hard to diagnose.

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