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Dermatus Herpetformus


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:unsure: 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? :unsure:
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Fiddle-Faddle Community Regular

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.

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JoeB Apprentice

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.

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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. :D

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Fiddle-Faddle Community Regular

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.

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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

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Fiddle-Faddle Community Regular
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.

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purplemom Apprentice

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.

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tarnalberry Community Regular

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.

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:o 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? :unsure:
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Fiddle-Faddle Community Regular

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.

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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.

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VegasCeliacBuckeye Collaborator

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.

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    • 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.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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