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Can Dh Come And Go?


Terri-Anne

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Terri-Anne Apprentice

Mydaughter often breaks out in a bumpy "rash" on the back of her neck in the hairline. This rash comes and goes. It could be absent for weeks, then suddenly appear, staying for 3 or 4 days, then disappear as suddenly as it came. The rash on her neck does itch. To me it looks more like small pus filled pimples, than little blisters. The contents appear whitish, not clear.

She also wears "Good night Pull ups" at bedtime, and also has a nasty bumpy "rash" that comes and goes on her buttocks. Again, it could appear one day, last for a few days, and then recede for a few days to weeks before reappearing. My sister suggested maybe this was a sort of heat rash, related to wearing the pull-ups and being sweaty in them, but the rash is only on her buttocks, not in the front areas at all. Daughter says the bumps on her behind hurt rather than itch.

Third symptom that has me wondering, is cracks near the corner of her mouth. I know that true "angular cheilitis" which can be related to celiac is right in the corner of the mouth where the lips meet. Daughter's crack(s) are very near the corner, but not exactly at the junction. These cracks appear more rarely than the rashes, like maybe only once every other month, but she is the only one of my children who gets them. She can feel them coming on, as she tells me when one is starting. She thinks they are cold sores, like her older sister gets, but I know they are not. They are very different from the blistering, crusting herpes cold sore my oldest daughter is prone to.

She is currently on a mainstream gluten filled diet! I hate to appear alarmist and bark up the wrong tree completely, especially when I know how difficult it is to convince physicians that celiac is real and present. If I am going to have to get into "bull dog" mode in pursuing a diagnosis, I want to have my facts straight first, so that my confidence won't be shaken by a patronizing doctor.

SOooooo do her symptoms sound like Dermatitis Herpetiformis/Celiac disease, or should I be looking elsewhere for a reason for her "rashes"?


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lovegrov Collaborator

All I do is comment from my own experience. It does not sound like the DH I had.

richard

KaitiUSA Enthusiast

When I have accidentally have gluten I get itchy on my elbows and around my knees. I will get bumps there and it will be itchy for a while and then the bumps will go away. My diet normally controls it. I don't get it as much now. Before I was diagnosed it would happen very frequently. This may not happen in everyone this was just my personal experience.

Good luck :D

lbsteenwyk Explorer

My 3 yo daughter has had a rash on her bottom that sounds similar to your child's. The Ped said it was eczema and gave her elidel (sp?) cream. My understanding is that celiac kids are also more prone to eczema. She also had a dry bumpy itchy rash all over her body (really I couldn't see it, but could feel it). The elidel did seem to help; but what I found to be most helpful was to slather her with Eucerin every night before bed. She's really improved and rarely scratches anymore. I don't know if her rash was related to her celiac disease or not.

Terri-Anne Apprentice
;) Thanks for your responses!
cdford Contributor

Hi! Your daughter's rash around the neck and hairline seem exactly like mine and my daughter's.

That is the first place I break out. If your daughter thinks about it, she may realize that she senses these coming on as well, though that area is not as sensitive. DH can come in different places on different people. Mine starts in my hairline, then my chin and ears, then shows up on my shoulders, arms, and backside. Those on my backside are tender like boils. Not sure why they feel different. I can sense the ones on my face before they ever get that light red look then break out into the pus pocket things. My daughter gets them in her hairline, but never in her ears, always on her lower legs first. She rarely gets them around her hips and rear. In both our cases, the bumps were first diagnosed as other things like eczema. It was not until the celiac disease diagnosis that it was determined to be DH.

The only way to be sure is to test them, but you can probably get a pretty good idea by keeping a food diary.

  • 1 month later...
Thangalin Newbie

hey,

noticed that you mentioned your daughter gets icky cold sores. you've probably done some research on the topic, but in case you haven't, there are some tips and details at:

Open Original Shared Link

ciao!

N


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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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