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

[Grace's mom]

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.

[cassP]

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

[pricklypear1971]

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.

[squirmingitch]

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.

[kmag]

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.

[Grace's mom]

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.

[pricklypear1971]

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.

[Anianna]

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.

[tlcounts]

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?

[squirmingitch]

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.

[itchy]

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.

[squirmingitch]

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.

[sisterlynr]

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!

[cassP]

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

[mendylou]

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

[zamm0]

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.

[LFitts]

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.

[squirmingitch]

LFitts, YAY!