Dermatus Herpetformus

[Guest Educator]

I have broke out with this wonderful Dermatitus problem. My gastro doc says just straighten up on my diet and all will be healed. My question is: can celiac cause premature hearing loss? Will a ear infection cause a breakout of Dermatitus Herpetiformus? My diet has not changed at all so what has caused this terrible skin irratiton? Sores on my back, under my arm and on elbows. Knees are starting to itch but no blisters yet. Any ideas out there?

[Fiddle-Faddle]

So sorry to hear that you have DH--I know how horrible that is.

Any chance there might be "hidden" gluten in your diet? Oatmeal, soy sauce, cereal that used to be gluten-free that isn't now (like corn pops), something like that?

The other thing is, did you recently change soap, laundry detergent, fabric softener, or anything like that? I had my DH outbreak right after changing all of the above--maybe celiac immune systems freak out at that sort of thing more easily than "gluten-normal" people's immune systems?

Be careful of hearing loss things--many doctors are clueless about that sort of thing (actually, a lot of them seem to be clueless about everything). A friend of mine lost the hearing in one ear after having a silent (symptomless) viral ear infection. Her only symptom: hearing loss, which the doctor didn't take seriously. The kicker is, she's a professional musician--not exactly good for her career.

[JoeB]

I had severe DH symptoms for about two years before I was diagnosed. I've been gluten-free for about 1 1/2 years now and it's only in the last couple of months that the DH symptoms have disappeared. You are still going to have symptoms in the early stages of healing.

Sorry, I can't help with the hearing loss questions.

[Guest Educator]

So sorry to hear that you have DH--I know how horrible that is.

Any chance there might be "hidden" gluten in your diet? Oatmeal, soy sauce, cereal that used to be gluten-free that isn't now (like corn pops), something like that?

The other thing is, did you recently change soap, laundry detergent, fabric softener, or anything like that? I had my DH outbreak right after changing all of the above--maybe celiac immune systems freak out at that sort of thing more easily than "gluten-normal" people's immune systems?

Be careful of hearing loss things--many doctors are clueless about that sort of thing (actually, a lot of them seem to be clueless about everything). A friend of mine lost the hearing in one ear after having a silent (symptomless) viral ear infection. Her only symptom: hearing loss, which the doctor didn't take seriously. The kicker is, she's a professional musician--not exactly good for her career.

No hidden things I know of. I purchase Gluten-free cereal from the health food store and it says gluten-free on the box. I use rice milk drink on cereal. I have recently changed clothes washing soap and bathing soap. Never thought of those items. I did check my lotions and use clinic makeup, suppose to be allergy free. I will check on the bath soap and laundry detergent. My immune system is so weak from my other illnesses that I guess it just take something small to cause a breakout.

I will do some digging into this hearing problem. I have never had an ear infection until this time. I really fine it strange to have it suddenly pop up like it did. Doc says there is a lot of scaring on the ear drum but I don't know from what as I never listen to loud music and never had any ear infection.

Thanks for the information. It was very insiteful.

[Fiddle-Faddle]

RICE MILK!!!!! That might be your hidden gluten source. I read in several places that a lot of the rice milks are NOT gluten free, even though you won't see any gluten listed on the ingredients. Apparently, a barley enzyme is used in the processing.

[Guest Educator]

RICE MILK!!!!! That might be your hidden gluten source. I read in several places that a lot of the rice milks are NOT gluten free, even though you won't see any gluten listed on the ingredients. Apparently, a barley enzyme is used in the processing.

Thanks so much for that bit of information. But I do have one question. What do you put on your gluten-free cereal? What do you use to bake with? Shells and Cheese (guten-free) calls for 1/4 c. milk. What do you use for that? Sincerely

[Fiddle-Faddle]

Thanks so much for that bit of information. But I do have one question. What do you put on your gluten-free cereal? What do you use to bake with? Shells and Cheese (guten-free) calls for 1/4 c. milk. What do you use for that? Sincerely

Can you eat almonds? I love almond milk, which is made by Blue Diamond and carried by some of the larger grocery stores. I actually prefer it to regular milk (which so far I'm not having problems with)! There is also a potato-based milk substitute that a lot of people really like, called Vance's Dari-Free. That one can be much less expensive as you buy it as a dry mix, so buying in bulk (I thinkyou can only get it mail-order, but I might be wrong on that one) is what you'd do if you try it and like it. And, of course, there are lots of soy milks available now, if you can tolerate soy.

[purplemom]

What if the Rice Milk says gluten free right on it? I live in Mass. and buy Stop & Shop Nature's Promise rice milk. I have never challenged it because it says gluten free on the back. I know Rice Dream uses barley.

[tarnalberry]

Have you also checked all your non-food, personal care items, like soap, shampoo, and toothpaste? (Two toothpastes, that I know of, have gluten, Sensodyne, and one other less common one that I don't remember.)

Additionally, removing iodine from your diet during an outbreak can help, as iodine is required in the reaction for forming the deposits that cause DH.

[Guest Educator]

Well, confirmed yesterday by two biopsy results, I have DH!! Can this problem crawl down in your ear canal? Left ear is killing me and I have the DH all over my face. Dermitologist said he will start me on some medication called D something. Said it can cause A Plastic Anemia. I am already at 11.4 on anemia due to kidney failure. He said it could drop my number by 2 points in two weeks. I would be dangerously anemic I think at that level. What do you think? Any suggestions?

[Fiddle-Faddle]

I'm so sorry--you must be feeling really miserable at this point.

I'm guessing the D med is Dapsone--google it and you should be able to find all the risks, etc. I think a lot of people on here have taken it for DH with good effect, though.

Can you sort of prophylactically counteract the anemia by upping iron intake, esp. consumption of beef, turkey, and dark greens? I know upping iron by pill can be problematic, but it isn't always. Hmmm. Oh, and I read on this board that iodine can be a big DH trigger, as it needs iodine to appear--can you cut down your sodium intake, as salt is usually iodized? Maybe sea salt would have less? Do dark greens contain a lot of iodine, or is that just seaweed?

I hope it improves very quickly.

[Guest Educator]

I cannot have iron or fiberous foods due to the gastroparesis. I am one complicated mess. I went to the Ear doctor today and now have a fungal and bacterial infection from the DH running into my ear canal. There is also mucus puddling. I wish I could take the allergy shots so this ear problem could clear up. All this infection is causing my blood sugars to be irradic. I have DH ALL over my face, left ear, elbows, shoulders and upper back! URG!!! I NEED a MAGIC pill. I also found out that Arm and Hammer Laundry detergent has gluten in it. BE AWARE. I am allergic to my cat too. If any of you pray; please remember me. Oh, I am already on a sodium restricted diet. Heart attacks last year.

[VegasCeliacBuckeye]

I have been on Dapsone for 9 years with few ill effects.

Admittedly, my DH has never gone away with a gluten free diet. Part of me is convinced I have other food allergies, I just have never tested positive for them.

The only bad thing dapsone does to me is make me sensitive to sunlight (I burn easily). As long as you take Iron Supplements and abide by a gluten free diet, most people are usually ok.