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

Can Dh Be Mild?


T.H.

Recommended Posts

T.H. Community Regular

I have a little rash, and I'm trying to figure out if it might be DH. It seems too mild to me, from the descriptions I've read, but I'm just not sure what the heck it could be. :unsure:

I'd appreciate any help you can give me!

I've had celiac disease for 1 year now. I've never had DH. I have a gluten-free kitchen, although some things are gluten-free to the point that my daughter can eat them, but I have reacted, so there is still that issue within the kitchen. I've also had non-hive allergic reactions to food since going gluten-free, as well, so I'm trying to figure out if my new skin 'thing' could be DH, or might be something else, ya know?

A week ago, I had one little bump on my chest, and one on my shoulder, that itched like crazy, but they never got that blistery look that many people describe. Just sort of...like a tiny blister that was about the same color as my skin, but so small and hard to check out that I wondered if it could be acne, honestly. Itched for a couple days, would be more visible when itched, but the itching faded after a few days. Never got crusty. During that time, I felt kind of out of it and fluish, like I sometimes do with gluten.

Now today, suddenly it's itching again on my chest in the exact same spot. The bump still seems to be there, even though it hadn't been itching, and now there's three more. They itch some - not so much I'm going cray - and sting a little too. They are pink, but only one has more of a real blister look. Very small, the diameter no bigger than the rounded plastic top to a pin used in sewing, if that. Last few days, again, I have the big D and feel kind of blech and flu-ish.

Some other information that might matter is that I've had no iodine at all for at least a couple weeks. I have an extremely restricted diet and get very little iodine. It's mainly from a supplement or from seaweed, but I haven't been having either of these for a couple weeks. I understand that iodine can have an effect on this rash, yes?

Honestly, I'm really stymied about what could be happening. It's not hives. It doesn't seem to be acne. I'm guessing not shingles because I've had that and this doesn't feel like it.

But, I know the chest does not seem to be the normal place for DH(can it even appear there at all?), and this is really mild, so... :unsure:

If anyone has any ideas on what the heck this might be, I'd sure appreciate them! Thanks in advance. :)


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



Celiac.com Sponsor (A8-M):



cantate7 Newbie

I am wondering the same thing. One symptom I had for about seven years before having the big D was that I had redness and very small bumps between my knees, and inflammation. That went away two weeks after going gluten-free, and comes back now that I have been gluten-free for a year any time I accidentally eat something with gluten in in (you know, the ol' "Ok, what did I eat this time?" routine.) When I was newly on the diet, I always got diarrhea immediately I ate something. Now I don't, but the knees react. Mild swelling and redness, then a few bumps. I have been wondering if it can be classified as DH or not, too.

T.H. Community Regular

It's nice to know that someone else has something that sounds similar, in any case!

I am wondering the same thing. One symptom I had for about seven years before having the big D was that I had redness and very small bumps between my knees, and inflammation. That went away two weeks after going gluten-free, and comes back now that I have been gluten-free for a year any time I accidentally eat something with gluten in in (you know, the ol' "Ok, what did I eat this time?" routine.) When I was newly on the diet, I always got diarrhea immediately I ate something. Now I don't, but the knees react. Mild swelling and redness, then a few bumps. I have been wondering if it can be classified as DH or not, too.

aderifield Apprentice

I've been gluten free for 3 weeks and am having these same small blisters, scattered mostly on my back and rib cage, but, also, on my thighs and upper arms. My scalp has been hurting and I notice I have a lot of larger bumps om my scalp that I never noticed before. I have been sweating profusely since going off gluten and my hair is very oily. I was hoping these blisters were from the sweating, but now, that they are getting worse, I am not so sure.

I know I'm in no way answering your question, but just want you to know that, yes, all sorts of strange things can happen to you once you go gluten free. This detox has been so bad for me that I'm actually beginning to wonder if I wasn't better off before I started it. (OMGoodness, I can't believe I said that. Must be high treason around here, but it is the way I'm starting to feel.)

Marz Enthusiast

aderifield - did you get a firm diagnosis of gluten intolerance? If not, are you going to do a gluten challenge at some point? Because you might find going back to gluten will be 10x worse that what you're experiencing now :)

You might also want to investigate soy and casein intolerance, maybe you're still reacting to something else as well as gluten?

For the OP, I'd be very interested in knowing if anyone experiences "mild" DH. I get these "itchy pimples" - they're scattered, usually legs or upper arms, but also chest, back or even eyelids. They're very small with a white head, surrounded by a thin red circle, and super, super itchy. I'd say they're pimples if they didn't itch like crazy and were in weird locations. They don't "pop" like pimples either, if I try to squeeze em I just get a red sore/scar, so I leave them be. I have at most 10 to 20 of them all over my body at a time, so definitely not "rash-like". They don't stay itchy too long, but it can keep me awake if I get them during the night.

I've occasionally seen a few "water-blister" like items on my arms, that within an hour or two turned into the itchy pimples above, so maybe my skin is just healing too quickly to get to the rash stage?

Also I think the key is I try not to scratch them, because I know that doesn't help :P

What makes me think they're DH - they went away with going gluten-free, and re-appear when I get glutened/soyed. I also get canker sores at the same time, which I think is related?

Doup Newbie

I've had the biopsy test and all of that happy stuff and diagnosed with DH / Celiacs via biopsy.

I know that if I get "glutened" my guts get all torn up and I will break out with blisters - usually a couple days later. The worse I end up getting glutened the worse I break out.

aderifield Apprentice

aderifield - did you get a firm diagnosis of gluten intolerance? If not, are you going to do a gluten challenge at some point? Because you might find going back to gluten will be 10x worse that what you're experiencing now :)

You might also want to investigate soy and casein intolerance, maybe you're still reacting to something else as well as gluten?

For the OP, I'd be very interested in knowing if anyone experiences "mild" DH. I get these "itchy pimples" - they're scattered, usually legs or upper arms, but also chest, back or even eyelids. They're very small with a white head, surrounded by a thin red circle, and super, super itchy. I'd say they're pimples if they didn't itch like crazy and were in weird locations. They don't "pop" like pimples either, if I try to squeeze em I just get a red sore/scar, so I leave them be. I have at most 10 to 20 of them all over my body at a time, so definitely not "rash-like". They don't stay itchy too long, but it can keep me awake if I get them during the night.

I've occasionally seen a few "water-blister" like items on my arms, that within an hour or two turned into the itchy pimples above, so maybe my skin is just healing too quickly to get to the rash stage?

Also I think the key is I try not to scratch them, because I know that doesn't help :P

What makes me think they're DH - they went away with going gluten-free, and re-appear when I get glutened/soyed. I also get canker sores at the same time, which I think is related?

Ohhhh, I believe you. I know it would probably be much worse. Every time I come in touch with gluten, I have a strong topical reaction, can only imagine what it would do to my insides at this point. I am just feeling really discouraged bc my detox is lingering and I was under the impression it would pass quickly. I've getting a lot of the small blisters you describe and my face looks like I've aged 10 years in the last month. I've lost inflammation all over my body, but it looks worse on my face - spawning deep winkles that I never had before. I'm feeling absolutely yuck. Can't stand to look in the mirror.

I have not had a biopsy, yet. Mine is not scheduled for another 3 months, but with what my body has been going through since stopping gluten, I think there's little doubt that I have Celiac's though, yes, I believe there could be something else going on, also. Thanks.


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



Celiac.com Sponsor (A8-M):



T.H. Community Regular

For the OP, I'd be very interested in knowing if anyone experiences "mild" DH. I get these "itchy pimples" - they're scattered, usually legs or upper arms, but also chest, back or even eyelids. They're very small with a white head, surrounded by a thin red circle, and super, super itchy. I'd say they're pimples if they didn't itch like crazy and were in weird locations. They don't "pop" like pimples either, if I try to squeeze em I just get a red sore/scar, so I leave them be. I have at most 10 to 20 of them all over my body at a time, so definitely not "rash-like". They don't stay itchy too long, but it can keep me awake if I get them during the night.

Well holy crud! I just started getting what you just described, a few days ago! Tried a new oil, felt sick, and just found out it is run on a line with wheat germ oil, too. I was thinking I was getting weird acne or something, but it is EXACTLY like what you just described.

Oddly enough, it's rather comforting to know that whatever it is, someone else in the world seems to be suffering from something similar. Misery loves company, I suppose, eh? Or rather, misery loves not being the only one so doesn't feel quite so crazy, LOL.

Thanks for the reply!

T.H. Community Regular

I know that if I get "glutened" my guts get all torn up and I will break out with blisters - usually a couple days later. The worse I end up getting glutened the worse I break out.

Oh, thank you for that information - that makes me wonder even more. We are really gluten free at our house, so the only thing that usually gets me is really low level CC sometimes with a new food, often a gluten free one that has so little gluten it doesn't even bother the other two gluten free kids in the house. Wonder if that low level of gluten might explain a very mild reaction, hmmm.

MacieMay Explorer

I've had the biopsy test and all of that happy stuff and diagnosed with DH / Celiacs via biopsy.

I know that if I get "glutened" my guts get all torn up and I will break out with blisters - usually a couple days later. The worse I end up getting glutened the worse I break out.

Curious??? These blisters you are talking about...are they what the Derm biopsied for your DH dx? You say blisters and the others are describing them as little pimples. My daughter, 18 mos has what these others are describing. I wouldn't necessarily call them blisters but more like pimples. I think she has celiac but has had negative scope and panel. We are going to the Derm in a few weeks. She also has what looks like a cross between psorisis and eczema on her elbows, knees, hands and feet. It looks different than the little pimples and the pimples go away. This other skin thing is not going away, even with hydrocortisone. Any insight?

Kay DH Apprentice

aderifield - did you get a firm diagnosis of gluten intolerance? If not, are you going to do a gluten challenge at some point? Because you might find going back to gluten will be 10x worse that what you're experiencing now :)

You might also want to investigate soy and casein intolerance, maybe you're still reacting to something else as well as gluten?

For the OP, I'd be very interested in knowing if anyone experiences "mild" DH. I get these "itchy pimples" - they're scattered, usually legs or upper arms, but also chest, back or even eyelids. They're very small with a white head, surrounded by a thin red circle, and super, super itchy. I'd say they're pimples if they didn't itch like crazy and were in weird locations. They don't "pop" like pimples either, if I try to squeeze em I just get a red sore/scar, so I leave them be. I have at most 10 to 20 of them all over my body at a time, so definitely not "rash-like". They don't stay itchy too long, but it can keep me awake if I get them during the night.

I've occasionally seen a few "water-blister" like items on my arms, that within an hour or two turned into the itchy pimples above, so maybe my skin is just healing too quickly to get to the rash stage?

Also I think the key is I try not to scratch them, because I know that doesn't help :P

What makes me think they're DH - they went away with going gluten-free, and re-appear when I get glutened/soyed. I also get canker sores at the same time, which I think is related?

I don't know if I have DH. Probably. My symptoms for DH look (and itch) classic, but the areas are small. Lime-sized ovals on the insides of my calves with a small area of raised red "water blisters", smaller on each side of my back, sometimes on my forearms. Perhaps if they had been larger I would have been diagnosed beyond "use hydrocortisone." It started about 30 years ago and I've shown them to numerous doctors with no diagnosis. I would wear shorts all winter, and I'm a 56 year old in Denver. Last November I got the flu and GI symptoms kicked in. I went gluten-free after about a month, D, brain fog, and most other symptoms went away in a week. Joints took longer. The rashes went away in 6 months, for the first time in 30 years. My Celiac panel was negative (I was gluten-free) and the endoscopy/biopsy was botched and negative. So, I probably have DH, but no diagnosis. I'm very sensitive to cc now and it I get minor cc'd during stressful times the itchy regions come back but no bumps, so far. Itchy area goes away within a few days.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    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

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.