• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Grace's mom

Daughter Dxd Dh Celiac, Went gluten-free, But Dh Persists

Rate this topic

Recommended Posts

My daughter who is 9 was diagnosed with dh form of celiac a month and a half ago. When she was diagnosed she had severe dh patches on her arms, knees, shoulders, neck and face. She has been 100% gluten-free for a month and a half. While the dh areas are better in most places, the areas on her arms are still bad, though not as bad. New lesions are still forming. How long will it take for this to stop? It is still very itchy for her and she scratches til it bleeds and we have had persistent staph issues when the open lesions are exposed. Thank you.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


My daughter who is 9 was diagnosed with dh form of celiac a month and a half ago. When she was diagnosed she had severe dh patches on her arms, knees, shoulders, neck and face. She has been 100% gluten-free for a month and a half. While the dh areas are better in most places, the areas on her arms are still bad, though not as bad. New lesions are still forming. How long will it take for this to stop? It is still very itchy for her and she scratches til it bleeds and we have had persistent staph issues when the open lesions are exposed. Thank you.

mine took 4 months of being gluten free to disappear.. but i also only had a small patch on my stomach and random bumps on my forearms

Share this post


Link to post
Share on other sites

Peruse the posts in this section and read about iodine.

She may need to limit it for a while. Iodine spreads it like gasoline, for some people.

Share this post


Link to post
Share on other sites

And even if iodine is an issue for her & she goes low iodine there is still the fact that it can take 2 years (or - & I hate to say it - more) for the IgA to get out of our skin. People with dh can have outbreaks at any time regardless of what they are or aren't eating until the IgA gets out of our skin. Not a pretty thought & one that none of us like to consider & also one that we all hope we escape but facts are facts & that's a fact.

Also dh is VERY, VERY sensitive to the tiniest amount of gluten so she will need to be extremely careful about cross contamination.

Read threads on here for help with controlling the itch as much as possible. She has to learn not to scratch it. I know --- it's near impossible but can be done. If she keeps scratching she will be scarred badly. And scratching doesn't stop the itch; if anything it only seems to serve to make it itch worse.

Share this post


Link to post
Share on other sites

It's been 1.5 years gluten free for me and still the DH persists. Just recently, it seems to be really calming down and I'm hoping that once I hit that two year mark it'll all be like a bad dream.

As the above posters said, scratching does cause it to be so much more itchy. Keep nails very short and possibly wear cotton gloves at home?

I did low iodine for three weeks and noticed no difference in symptoms.

Share this post


Link to post
Share on other sites
Ads by Google:


Thank you for the replies.

We have the added difficulty that she has autism so this is a very difficult change for her not to be able to eat what she is accustomed to. I am very, very concerned about cross contamination as we live in a small town where no one knows about celiac or gluten. So even if I know a food is gluten free it could still be cross contaminated. We went to olive garden and ordered off of the gluten-free menu and the pasta was obviously gluten-free but I still worried about the sauce. And the salad. (no croutons). Basically I am preparing everything at home and google to see if it is gluten.

She is already scarred from scratching the dh. The dr said it should heal but the skin there is different-thicker, coarser, and discolored. I use neosporin on the areas and cover them when she lets me but she can scratch through the coverings. We also have a prescription steroid cream that doesn't help at all so I think I should stop using it.

I will continue reading on this site for more tips. Thanks.

Share this post


Link to post
Share on other sites

Ice packs if she'll do them...helps with the itching.

Steroids are a mixed bag - it brings down inflammation but can impair healing. When she goes off them it WILL flare.

Some people use benzocaine ointment to numb them.

Share this post


Link to post
Share on other sites

Thank you for the replies.

We have the added difficulty that she has autism so this is a very difficult change for her not to be able to eat what she is accustomed to. I am very, very concerned about cross contamination as we live in a small town where no one knows about celiac or gluten. So even if I know a food is gluten free it could still be cross contaminated. We went to olive garden and ordered off of the gluten-free menu and the pasta was obviously gluten-free but I still worried about the sauce. And the salad. (no croutons). Basically I am preparing everything at home and google to see if it is gluten.

She is already scarred from scratching the dh. The dr said it should heal but the skin there is different-thicker, coarser, and discolored. I use neosporin on the areas and cover them when she lets me but she can scratch through the coverings. We also have a prescription steroid cream that doesn't help at all so I think I should stop using it.

I will continue reading on this site for more tips. Thanks.

For me, Ranitidine (generic for Zantac) 150mg and colloidal silver sprayed on the rash helped reduce the itching and the silver also reduced my blisters (or, more accurately, my blisters reduced in size and discomfort every time I sprayed them with the colloidal silver; I find no research indicating this is the result I should have gotten, but this is my personal experience).

I haven't found research on the silver related to DH, but I tried it on a whim out of desperation. Taken orally for a long period of time or in large quantities, silver can cause Argyria, a condition of excess silver in the body that turns the user's skin blue or gray. My research did not turn up incidents of Argyria in patients using silver topically. Silver, in the form of silver nitrite, is still required by law in most states as an eye drop to prevent eye infection in newborns and silver's effectiveness as an eye drop to treat conjunctivitis is documented to some extent. I came to the conclusion, for myself, that it is not likely to hurt used topically so long as I don't overdo it. Keep in mind that a lot of claims about the "miracles" of silver floating around on the internet are not backed by research.

Share this post


Link to post
Share on other sites

I've had a patch on my leg for nearly 6 months now. I think some spots take time, a lot of time. I also talked to a new dermatologist today and he recommended the drug Dapsone, I still need to look into it more but he seemed to think it would help clear things up?

Share this post


Link to post
Share on other sites

I've had a patch on my leg for nearly 6 months now. I think some spots take time, a lot of time. I also talked to a new dermatologist today and he recommended the drug Dapsone, I still need to look into it more but he seemed to think it would help clear things up?

Dapsone makes the dh go away but doesn't "cure" it. The itching will stop very quickly --- in days or a week. But I would advise you to research Dapsone very thoroughly before trying it. Also, remember that Dapsone masks the dh so if you are on it then you will have no way to know if you are getting glutened or cross contaminated. Many here have tried Dapsone & had other rashes result from the Dapsone or other side effects that made them have to quit it. Some on here have had good results with Dapsone. It can affect your liver so make sure you get liver panels before beginning Dapsone & also during treatment. Be your own health advocate. Doctors love to prescribe pills as the magic solution but they don't always know what other considerations are or precautions to take before or during the time you are taking those pills.

Share this post


Link to post
Share on other sites


Ads by Google:


I disagree a little about scratching. Clearly it makes the itch or sting feel better or people wouldn't do it, although ultimately it may make the problem worse. Keeping the lesions moist with creams may help a lot. Notice that for many of us DH is often worse at certain times of the day, usually evenings, so that may help you concentrate your efforts at that part of the day, perhaps diverting attention or covering the lesions then.

If the DH is bad it may take months/years to go away, even with a strict diet, but it will get better after a few weeks or months, presumably.

I am a little surprised you've had a problem with infection, of scores of lesions I've had none have been infected, but that just shows the variation that occurs.

Eating out will always present a huge problem, because you put a lot of trust in people you don't know to look out for your interests. Personally I don't trust any sauces, etc. even in places that claim to have gluten free meals/menus.

It can take a while (months, years) to learn what a real gluten free diet is, and which risks are worth taking. People vary somewhat in their level of sensitivity, and you will learn how sensitive Grace is over time, mostly through mistakes.

I believe that most people can conquer DH without medication, but with Grace's autism this might not be realistic.

Share this post


Link to post
Share on other sites

It could be also that b/c Grace is a child that she gets infections in the lesions. Adults are more aware of hygiene I think as a general rule whereas kids --- well, they're kids... they get their hands in dirt & don't wash them immediately, they scratch the cat or dog & don't wash their hands immediately, etc....

Like itchy, of scores (more like hundreds) of lesions, I've not had any become infected. We have, on this forum, surmised that a big reason for that is because there are so many antibodies in our skin that infection doesn't stand much of a chance.

Share this post


Link to post
Share on other sites

I've had a patch on my leg for nearly 6 months now. I think some spots take time, a lot of time. I also talked to a new dermatologist today and he recommended the drug Dapsone, I still need to look into it more but he seemed to think it would help clear things up?

I started Dapsone after researching and asking my PCP to prescribe it. She took blood test after 4 days and everything was ok. I am glad I started it. Having great results!

Share this post


Link to post
Share on other sites

YES- i ALSO recommend SILVER.. i totally forgot i put it on my rash too... calmed it down a little bit while i healed and detoxified of gluten

Share this post


Link to post
Share on other sites

This Dec I will have been gluten free for 2 years. Also within the last year I have avoided iodine as much as possible. That is a big trigger for me. I had no idea my DH would be so persistent. At first it seemed to improve, but the longer I was gluten free I seemed to react even more strongly to the least bit of gluten. It used to take days to get a skin reaction & it was very difficult to pinpoint the trigger. What I do notice now is that within hours I have a breakout which I can watch erupt on my skin as well as feel the burning, itching, crawling feeling in my skin before it breaks out. The breakouts aren't quite as severe as before. However I have not had skin clear of DH in this entire 2 year time of being gluten free.. I am always broken out to some degree. I do believe it is not as severe as earlier but the reaction occurs more quickly. I know this doesn't sound like good news but I now know it is going to take more time for me to heal completely. Hope this is helpful

Share this post


Link to post
Share on other sites

FWIW I've been gluten-free for 4 months (antibodies now test negative) but still have DH. Ive had the latter for more than 2 years but would say it's relatively mild - annoying yes, but doesn't stop me sleeping or anything thank God.

Share this post


Link to post
Share on other sites

My 9 year old daughter has had this horrible DH rash for 5 years. After 6 weeks gluten free with drastically reduced iodine, it looks totally clear today! I know it could flare up at any moment, but I'm thankful for today.

  • Upvote 1

Share this post


Link to post
Share on other sites

LFitts, YAY!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,949
    • Total Posts
      943,639
  • Member Statistics

    • Total Members
      67,313
    • Most Online
      3,093

    Newest Member
    Kellyon
    Joined
  • Popular Now

  • Topics

  • Posts

    • Also I should add that in the 12 weeks, my vitamin d plummeted and now am deficient. Would you guys accept a celiac diagnosis (I am pretty confident that I have it- I was sad before the challenge that I couldn’t eat gluten anymore. Now after the challenge i am EXCITED to never eat it again as I feel like such crap now) or can a positive diamodated Gliadin  IgG indicate anything else? Or is it specific to celiac? I am happy to get a diagnosis,  but want to make sure it’s the right one. I wish I trusted my doc more (example- 3 days ago they called and said congrats, no celiac, u can eat gluten!! The doc signed off on it. But I looked at my results and pointed out that the deamidated IgG levels were not reported yet. The doc said whoops my bad. The next day they came back positive and I got another call & they said, nevermind, no gluten, you’re positive! They are idiots). 
    • Looking for advice and also to help those undergoing testing. I went to my general practitioner back in August with nausea, bloating, diarrhea, migraines, sluggishness, and a feeling of general unwellness. I was eating a gluten diet at the time. My doc ordered the dual antigen screen- it came back positive for celiac. He set up an appointment for me with a specialist. I called the specialist and they could get me in 8 weeks later. I asked the specialist if I went gluten free is this would affect any testing. They said “no” that I was in a gluten diet for so long I would be fine. However, 8 weeks later, the blood test showed no celiac- my results were normal after 8 weeks on a gluten free diet. I felt great, for me the turnaround was almost immediate- in a week or 2 I felt amazing. But that didn’t help with getting accurate results (mostly wanted to rule out another autoimmune disorder). I then went on gluten for 7 weeks (I ate a lot of gluten- like at least a bagel a day and much more on some days- I wasn’t messing around, I wanted an accurate diagnosis)and repeated the blood test at 7 weeks. It came back a very weak positive for deamidated gliadin abs iGg. I then underwent a endoscopy because the doc said that number, although positive, was not high enough to go off of. The endoscopy came back normal- however, the doc noted that higher levels of antibodies were found but not in the “abnormal range.” So, they were present, just not in crazy levels. I then kept eating gluten- I should note my doctors SUCK (could do a whole other post just on this- I have been my own doctor pretty much). I just took another blood test at 3 months eating gluten. My levels are now SUPER high for deamidated Gliadin abs IgG. The doc is confident I have celiac. Question is- my doc is so bad, I wanted to check here to make sure that it indicates celiac. I also wanted to help others as I know there’s lots of conflicting information on how long to do a gluten Challenge. For me, it took 3 months. My gut tells me I am early stage celiac- I don’t have full blown damage yet, but if I keep eating it I am sure it will do some damage. Just wanted to highlight this as if your case isn’t super bad yet, you may have to eat gluten longer- everyone is different. Any advice on my results would be awesome!
    • Hi Matt,  Thanks for taking the time to reply!  I completely agree haha.  Thanks for the links - I'll give them a read over!  I think it was a mixture of the first time travelling with being gluten-free and the added bonus of the language barrier, it made me dread meal times when usually food is the first thing I think about when travelling to new places! Again, I think the planning element was also a factor, not being able to walk past a nice bakery without walking in - why do most Berlin train stations have bakeries in everyone?!?! THE SMELL!!!  Haha, good excuse! Could have used that in the hotel restaurant (arrived late the first night) and the only avail dish was a dry chicken Caesar salad (literally 3 thin slices of chicken, 5 cherry tomatoes and a plate of lettuce).  I am I'll give the website a look over too - thank you! My app's with my consultant are every 6 months, basically was just sent away with no info/advice given and feeling the struggle now that reality has set in that this is for good!  Hope you are well! 
    • Gluten is a protein smaller then blood,bleach does not kill it as it is not a germ. I would replace scratched pans. baking dishes, tubaware, wooden utensils, colanders, etc. Throw out crumby condiment jars and any non gluten-free spices and condiments. Cast Iron can be saved and some metal utensils by putting in your oven self clean cycle, 500F will destroy the protein. I always tell people easy ways to get started on new cookware, nordicware microwave cook ware, omelette makers, steamers, rice cookers, grilling plates (do not forgot the splatter cover), This way you can have a cheap and easy meals, a new crockpot and use crockpot liners is great for soups, I suggested a combo rice cooker/crockpot/steamer as a great investment. OH if you want a nice clean safe prep area/counter/eating place mat, look up freezer paper/butcher paper. I did a post on where to get it in bulk awhile back. But laying it out is perfects, and makes clean up a breeze. Foil sheets in baking dishes works great for a extra precaution but if you have any with baked on stuff or scratched look at getting new ones. PS took me over  months to start feeling much better. Sometimes the improvement is minor and you have to think back to the worst you had. It does improve but normally big changes are after a year.
      https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
      https://www.celiac.com/gluten-free/topic/118842-freezer-paper-for-safe-prep-surface/?tab=comments#comment-979071 https://www.celiac.com/gluten-free/topic/120402-gluten-free-food-alternative-list-2018-q1/  
    • It sounds like your hives resolved.  I had a six month bout with them.  Antihistamines really helped.  My doctors are not sure if Mast Cell or autoimmune is the root cause.  
  • Upcoming Events