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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Does Dh Itch All The Time?


JustMe75

Recommended Posts

JustMe75 Enthusiast

I posted this in another topic but it was with other stuff and I didn't get much of a response.

My youngest daughter (11) has a rash on her neck that has been there for about 6-8 months that looks like a million little pimples, some flesh color, some white heads, some red. She said they itch terrible but not all the time (probably not even most of the time). She told me last week they start itching after she eats. After she has been itching it then it burns and hurts to touch it. I took her to the doctor about a month ago and he said the usual... did I change laundry soap things, which I didn't . Its only on the front of her neck and chest and sholders but mostly on her neck. Could this be DH? Would it itch all the time? It kinda reminds me of a shaving rash if that helps you picture it. Like every pore is irritated.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Franceen Explorer

If she has already been diagnosed with Celiac then it could very well be the beginning of DH....

However, all by itself, it doesn't really sound much like DH which doesn't tend to get on the neck and face. DH is most often found on the arms, legs, and then the back and trunk (chest, stomach, arm pits, buttocks).

DH also is a "pox"-like rash - little blisters that break open easily when scratched and then scab over quickly and still itch even after scabbing. They can also burn, but always itch. DH has been described (and I can attest to it) as the itchiest rash on the planet and ever seen by anyone. But I've read on this forum from some who didn't have that much itch. But, itch, like pain, is a "tolerance" thing too!

What you are describing (from the brief description you give and without seeing), sounds a bit like a heat rash or (yes) a detergent/chemical reaction. Also, got to consider hormones at that age. You could try a gluten free diet for a while and see if that helps. Also a milk-free or wheat-free (but each one separately and not near in time) diet. I would try to change to a mild, fragrance-free detergent for her clothing and towels and sheets, etc. And then there's wool, polyester and dye - all can be culprits.

If it is DH it will be very stubborn and none of the above (except the Gluten Free diet) will help! If that doesn't start to help after a few week, you would have to go back to the Dr. (hopefully and allergist and/or dermatologist) for a complete evaluation!

GOOD LUCK! DH is an elusive Diagnosis.

Link to comment
Share on other sites
JustMe75 Enthusiast
If she has already been diagnosed with Celiac then it could very well be the beginning of DH....

However, all by itself, it doesn't really sound much like DH which doesn't tend to get on the neck and face. DH is most often found on the arms, legs, and then the back and trunk (chest, stomach, arm pits, buttocks).

DH also is a "pox"-like rash - little blisters that break open easily when scratched and then scab over quickly and still itch even after scabbing. They can also burn, but always itch. DH has been described (and I can attest to it) as the itchiest rash on the planet and ever seen by anyone. But I've read on this forum from some who didn't have that much itch. But, itch, like pain, is a "tolerance" thing too!

What you are describing (from the brief description you give and without seeing), sounds a bit like a heat rash or (yes) a detergent/chemical reaction. Also, got to consider hormones at that age. You could try a gluten free diet for a while and see if that helps. Also a milk-free or wheat-free (but each one separately and not near in time) diet. I would try to change to a mild, fragrance-free detergent for her clothing and towels and sheets, etc. And then there's wool, polyester and dye - all can be culprits.

If it is DH it will be very stubborn and none of the above (except the Gluten Free diet) will help! If that doesn't start to help after a few week, you would have to go back to the Dr. (hopefully and allergist and/or dermatologist) for a complete evaluation!

GOOD LUCK! DH is an elusive Diagnosis.

Thank you for the reply. I didn't think it was in the right place to be DH but wasn't sure. I don't think heat rash because it is almost constant but seems to flare up at times. I think it is food related more then laundry soap because it is actually where clothes aren't touching her (like throat to jaw line) mostly. I will try the dairy and gluten free to see if it helps. I am gluten-free and my older daughter is allergic to dairy.

Link to comment
Share on other sites
ravenwoodglass Mentor

Although this is not the 'usual' presentation for DH, DH can be know to not follow the rules. When I was a child I had the usual presentation for DH, misdiagnosed as 12 months out of the year poison ivy for years. I have also had DH present only on the neck, sides of my face and scalp. Sometimes it would itch horribly but not 24/7. Usually after I tore off the tops of the lesions and the fluid was released then the itching would stop but the sores would take months to heal and new ones would form outside the borders of the old one. One thing about DH is that it leaves distinctive scars, the scars from DH are a purplish red and take a very long time to fade. Have you eliminated gluten from all the toiletries you all use? Shampoos and lotions etc. I had to be a real gluten scout for a bit before my DH healed and it can take up to 2 years for the antibodies to leave the skin layers. Until the antibody reaction is gone it takes very little gluten to restart the DH. I am now 5 years into the gluten-free diet and even when glutened I only get one or two tiny blisters now that heal quickly. It does take time though and the only good thing I could really say about my DH was for the first couple of years it let me know within hours when I had been CC'd. If you should decide to have them biopsy the rash make very sure they know what they are doing, they need to biopsy the area next to the active lesion not the lesion itself.

Link to comment
Share on other sites
LoriC Apprentice

i was just diagnosed with DH and i had it on my lower back, across my belly, neck, scalp and shins of my legs....after going gluten-free and dapsone it all disappeard, now it went to my face and pubic area recently..so i'm guessing every one is different..the ones on my face don't itch as much as it does/did everywhere else. I'm starting to think this is a never ending battle anymore ;(

Link to comment
Share on other sites
  • 1 month later...
elefky Apprentice

I believe that DH has no limitations regarding location. Mine started on my scalp and was pretty itchy. I first thought they were fly bites (we were on vacation in Florida). I was scratching and scabbing and scratcing off the scabs, and on and on. I went to my doctor who said "I can tell you it's not cancer" (what else do you think when you have skin lesions), and referred me to a dermatologist. By the time I got to her, I had breakouts on my chin. She thought my chin looked like impetigo and then the first tests from my scalp said folliculitis. I started breaking out on my upper back and when I had a nice new fresh blister I ran to the derm, she removed it, sent it out for biopsy and bingo! Dermatitis Herpetiformis! She started me on Dapsone and a gluten free diet.

12 years now. (Shopping is much easier now than it was then) I do have small breakouts from time to time, mostly on my scalp, near my elbow, on one (not both) breast and they don't itch like the original breakout did.

A diagnosis of DH is a diagnosis of Celiac even if there are no intestinal symptons. But a diagnosis of Celiac does not mean someone will have DH.

Link to comment
Share on other sites
JustMe75 Enthusiast
I believe that DH has no limitations regarding location. Mine started on my scalp and was pretty itchy. I first thought they were fly bites (we were on vacation in Florida). I was scratching and scabbing and scratcing off the scabs, and on and on. I went to my doctor who said "I can tell you it's not cancer" (what else do you think when you have skin lesions), and referred me to a dermatologist. By the time I got to her, I had breakouts on my chin. She thought my chin looked like impetigo and then the first tests from my scalp said folliculitis. I started breaking out on my upper back and when I had a nice new fresh blister I ran to the derm, she removed it, sent it out for biopsy and bingo! Dermatitis Herpetiformis! She started me on Dapsone and a gluten free diet.

12 years now. (Shopping is much easier now than it was then) I do have small breakouts from time to time, mostly on my scalp, near my elbow, on one (not both) breast and they don't itch like the original breakout did.

A diagnosis of DH is a diagnosis of Celiac even if there are no intestinal symptons. But a diagnosis of Celiac does not mean someone will have DH.

Interesting... the doctor said maybe impentigo and tried a cream and an antibiotic and nothing changed. I thought maybe folliculitis cause it looks like the pores, or hair follicules are inflamed. Its scattered on her upper back and chest but mostly on her neck. Maybe I will ask to see a derm. It almost looks like acne but they are everywhere... like every pore is irritated. Like a mans shaving rash.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • 3 weeks later...
elefky Apprentice
Interesting... the doctor said maybe impentigo and tried a cream and an antibiotic and nothing changed. I thought maybe folliculitis cause it looks like the pores, or hair follicules are inflamed. Its scattered on her upper back and chest but mostly on her neck. Maybe I will ask to see a derm. It almost looks like acne but they are everywhere... like every pore is irritated. Like a mans shaving rash.

Get her tested. Tell the dermatologist you want her tested for DH and maybe have a full set of allergy tests.

Link to comment
Share on other sites
elmuyloco5 Apprentice

It sounds to me like what my daughter and I have, keratosis pilaris. It looks like you have goosebumps, but they're inflamed. They don't always have to be red, but when a flare occurs, they usually turn red and can bleed too. Mine just feels like bumps, but my daughter's is worse and really makes her skin feel like sandpaper.

With this skin disorder, your body produces too much keratin, a hard waxy protein, and it clogs hair follicles. Infact, if you squeeze the bumps, you usually get a hard white waxy bit of stuff out. It can itch like crazy, and can occur anywhere on your body, although some areas are more likely than others.

While you wait to see a derm, you might want to try what we do to help with ours. It's important to exfoliate the affected skin to break open the bumps and help remove the keratin. Then blot yourself dry, don't rub. You want to keep as much of the water moisture on your skin as possible. And apply a good thick lotion (we use Suave for extra sensitive and dry skin). This usually helps keep it pretty well controlled, although my daughter's never completely goes away.

I can say though that our rashes appear to be getting better since we went gluten-free about 3 weeks ago. Good Luck!!!

Link to comment
Share on other sites
  • 3 months later...
linuxprincess Rookie
I posted this in another topic but it was with other stuff and I didn't get much of a response.

My youngest daughter (11) has a rash on her neck that has been there for about 6-8 months that looks like a million little pimples, some flesh color, some white heads, some red. She said they itch terrible but not all the time (probably not even most of the time). She told me last week they start itching after she eats. After she has been itching it then it burns and hurts to touch it. I took her to the doctor about a month ago and he said the usual... did I change laundry soap things, which I didn't . Its only on the front of her neck and chest and sholders but mostly on her neck. Could this be DH? Would it itch all the time? It kinda reminds me of a shaving rash if that helps you picture it. Like every pore is irritated.

Wanted to throw my 2 cents in a little late, but none the less.

I have DH and have found that anything that I put on my skin ( lotion shampoo conditioner hair products laundry detergents soap ) will cause me to break out. I've had this same rash since about June of 2007. Since starting on a single elbow, it moved to the back, legs, arms, stomach, scalp and torso. I've been gluten-free since January with little improvement in symptoms. I really think it varies on the person.

I would check the ingredients of all the products that you and your daughter are using. If she's in sports and they collectively wash the jerseys it might be that or something she's using in her hair. Every pore being irritated is the same characteristics that mine has in random blotchy spots. I would none the less have her tested or just do an elimination diet. Although that might be hard with a school aged child as you ( and they too ) don't always really know what they're eating. Good luck and keep us posted.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,501
    • Most Online (within 30 mins)
      7,748

    fine one
    Newest Member
    fine one
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
×
×
  • Create New...