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 Come And Go?


Terri-Anne

Recommended Posts

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"?


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



Celiac.com Sponsor (A8-M):



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


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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

    2. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • 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.