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!

Newly Gluten Free - Need Input


AustinDH

Recommended Posts

AustinDH Newbie

Hi, I'm a new user here. I have been diagnosed w/DH and under a dermatologist care for if for 14 years. I never went gluten free because I controlled the DH with a low dosage of Dapsone every other day or so, and I never had any abdominal pain or other symptoms of Celiac (thank goodness, from what I have been reading here). I didn't even know about Celiac until I saw a dietician in August and she told me about the link. I asked my derm about this b/c I was mad he never told me the health risk of continuing to eat gluten and he said he thought it was minimal in me b/c I've never had any symptoms of Celiac and my DH was mild.

Anyway, a few months ago, the DH suddenly got really bad and even taking the Dapsone every day at slightly increased dosages didn't keep it under control. Also, we are going to start trying to get pregnant, and my dermatologist told me to get off the Dapsone. So, now the DH is worse than ever and I'm off the medicine (I still have no symptoms of Celiac). I've been gluten free for all of about 2 weeks. It's been hard for me to see all the hidden places with gluten because I'm still in the mindset that I don't have to be that careful since "I don't have it that bad." Well, I'm sitting here right now and I feel like half my body is on fire with these itchy blisters and I can feel the burning in multiple places that means I'll be having even more blisters when I wake up in the morning, so I know I have it bad and I'm so glad I found this message board!

Anyway, my questions are: (1) How long does it take for the itchy blisters to subside once you are gluten free? They are getting worse and worse every day even though I know I am gluten free. Today I ate two boiled eggs, an apple, and then a gluten-free meal at Pei Wei (diner version of PF Changs). Yet, it seems like the blisters are multiplying every hour. Is there a point where they will just stop and then gradually subside, or can I expect this to cover my arms and legs in the next few weeks?? Does it do any good to fast or anything like that?

(2) Has anyone taken Dapsone while they were pregnant?

(3) Any suggestions for how to successfully address the painful itching? The lidocaine my derm. suggested is expensive and useless.

Any suggestions are welcome.

Thanks,

Itching in Austin

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



plantime Contributor

Hi Austin. I am sorry to tell you that, as you now know, your dermatologist was very wrong. There is no such thing as being a little celiac. It is like being a little pregnant. Right now, since you have been gluten-free for two weeks, your body is still detoxing from the years of gluten. Your outbreak is worse, but it will subside. You will have to remain gluten-free for the rest of your life to prevent future outbreaks. I don't know anything about the med you were on, nor do I have any advice on how to ease your suffering, since my celiac never manifested as DH. I do empathize, though, and I am very sorry that you are suffering so. Perhaps making a stinging nettle infusion, chilling it real good, then rinsing your skin with it will help? That is what I use when my psoriasis is driving me insane. It doesn't stop the outbreak, since it caused from within, but it does soothe my skin. To make an infusion, put 1/2 cup dried stinging nettle in a glass jar, pour one quart boiling water over it, cover, let set for at least 4 hours (I prefer to let it set over night). Then strain it, chill it, and pour it over your skin. You can also drink the infusion, it is very good for you. Good luck, and healing to you!

Link to comment
Share on other sites
tarnalberry Community Regular

I don't know how long being gluten-free it'll take for the DH to go away, but I would like to reiterate the need to be _completely_ gluten-free for it to be effective, and the need to be gluten-free for the rest of your life. Additionally, you might want to do further research in the area, but what I've read suggests that, while an episode of DH is occuring, it's best to keep your iodine intake as low as possible, since iodine is an important part of the skin chemistry that leads to the DH itself. (Google will tell you more than I can on the iodine/DH link.)

Link to comment
Share on other sites
lovegrov Collaborator

The experts all agree on this -- if you have DH you have or will have celiac disease. In fact, the NIH says that if you have DH you don't need to be tested for celiac disease. You can just assume you have it.

Until the DH subsides you need to cut the major sources of iodine. This includes seafood and iodized salt.

Getting rid of the DH can take months even if you're very careful. The only other option I can think of is to stop trying to get pregnant and use the dapsone until you've been gluten-free for a few months.

richard

Link to comment
Share on other sites
Pegster Apprentice

For severe DH flare ups, I soak in Aveeno Oatmeal baths. It really helps me. I use a steroid ointment for flare ups also. I have been Gluten Free for about 8 months. My DH symptoms were always worse than my GI symptoms, but it was worth going gluten-free to get rid of the rash. My rash disappeared completely just a few weeks after I went gluten-free. I have had a few flare ups, but I can always trace them to something I ate. I never went on Dapsone, but I will if I need it in the future. Good Luck. With years of gluten inside you, it may take a while to rid your system!

Link to comment
Share on other sites
  • 2 weeks later...
FreyaUSA Contributor

It also took several weeks for my son's DH to clear up once going gluten-free. He also had no GI symptoms. NOW, however, his DH is much worse when he gets into gluten and he's having all the other celiac disease reactions, too. He's 7 months gluten-free with an average of one slip-up a month.

I think it's terrible that your doctor took it upon himself to not even let you know about the DH-gluten connection! :angry:

Welcome to the board! :)

Link to comment
Share on other sites
  • 1 month later...
ravenwoodglass Mentor
Hi, I'm a new user here. I have been diagnosed w/DH and under a dermatologist care for if for 14 years. I never went gluten free because I controlled the DH with a low dosage of Dapsone every other day or so, and I never had any abdominal pain or other symptoms of Celiac (thank goodness, from what I have been reading here). I didn't even know about Celiac until I saw a dietician in August and she told me about the link. I asked my derm about this b/c I was mad he never told me the health risk of continuing to eat gluten and he said he thought it was minimal in me b/c I've never had any symptoms of Celiac and my DH was mild.

Anyway, a few months ago, the DH suddenly got really bad and even taking the Dapsone every day at slightly increased dosages didn't keep it under control. Also, we are going to start trying to get pregnant, and my dermatologist told me to get off the Dapsone. So, now the DH is worse than ever and I'm off the medicine (I still have no symptoms of Celiac). I've been gluten free for all of about 2 weeks. It's been hard for me to see all the hidden places with gluten because I'm still in the mindset that I don't have to be that careful since "I don't have it that bad." Well, I'm sitting here right now and I feel like half my body is on fire with these itchy blisters and I can feel the burning in multiple places that means I'll be having even more blisters when I wake up in the morning, so I know I have it bad and I'm so glad I found this message board!

Anyway, my questions are: (1) How long does it take for the itchy blisters to subside once you are gluten free? They are getting worse and worse every day even though I know I am gluten free. Today I ate two boiled eggs, an apple, and then a gluten-free meal at Pei Wei (diner version of PF Changs). Yet, it seems like the blisters are multiplying every hour. Is there a point where they will just stop and then gradually subside, or can I expect this to cover my arms and legs in the next few weeks?? Does it do any good to fast or anything like that?

(2) Has anyone taken Dapsone while they were pregnant?

(3) Any suggestions for how to successfully address the painful itching? The lidocaine my derm. suggested is expensive and useless.

Any suggestions are welcome.

Thanks,

Itching in Austin

One thing that noone has mentioned yet is you need to make certain that all your toiletries are gluten-free. Anything that comes in contact with your skin, I even check laundry products. I ended up throwing away most everything after I was diagnosed. The blisters should improve soon but may take awhile to go away completely. Also make sure everything you use in your kitchen is new or very well cleaned. Ie. Get a new toaster. And look at the bright side at least they knew what it was, they treated me for poison ivy 12 months of the year for my whole childhood! Good Luck

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



cdford Contributor

Been where you are...

The good news is that the DH symptoms will improve with time. They got much worse with both of us for the first few weeks. Then they gradually got better. Since there is so much controversity over the oatmeal, we don't do Aveeno baths. At first we did baking soda, then I found a Shaklee product called Basic H that works wonders. You can see and feel the difference once you get out of the tub. It is actually a natural household cleaner but is so mild that you can use it on a baby's bottom for diaper rash. We put about a teaspoon in a large tub of warm water and soak. I keep a bathcloth handy and dip it into the water and place in on the spots on my face and neck (and even drizzle it on the ones on my ears).

Stay absolutely and completely gluten-free. It is the only way to ensure that the DH gets better and stays better. And it does get much, much better with time. It took six months for the places to completely go away. They would then come and go some for another six months. Now we only see them when we have an accidental gluten ingestion.

Link to comment
Share on other sites
  • 1 month later...
casnco Enthusiast

Austin:

I know it has been a while since you posted but if I may I would like to just add my support and offer some comments. I too tried to stay gluten-free for several months before figuring out that gluten is in just about everything I love to eat. I avoided the obvious. Bread, pasta, crackers, pies, cakes, cookies. But I was still broke out. Every evening I would stop at Wendy's for an order of French Fries. (I know, not very healthy) and every evening I would itch like crazy after being pretty mild all day long. Then I read about the oil being contaminated by the breaded chicken they fry in the same oil. Bye, bye Wendy's. There were several incidents of not realizing the cross contamination or worse yet, eating foods I thought would be gluten-free by nature, like cottage cheese. So now I have been completely aware and have only had one accidental contamination. Well small depends on who you talk to, my DH came back with a vengance! Dang, it took 41/2 weeks to go away!!!!! All for one small accidental contamination at a resturant. Because I was to ashamed to ask questions before ordering. Now if I am feeling timid about questioning the wait staff and the chef I just dont eat out.

Good Luck! There is so much information on this site as you have probably already found out. Also, I have menues from my favorite resturants that I carry with me. When i shop I keep my cell phone handy to call 1-800 #s. There hasn't been anyone that couldn't tell me if an item was safe or not. I email alot of companies and they are glad to send me a list of gluten-free products. There are more of us out there than meets the eye when companies like hormel can email within the hour their list of gluten-free products!

Again, good luck and keep us posted.

Link to comment
Share on other sites
tiny86 Newbie
For severe DH flare ups, I soak in Aveeno Oatmeal baths. It really helps me. I use a steroid ointment for flare ups also. I have been Gluten Free for about 8 months. My DH symptoms were always worse than my GI symptoms, but it was worth going gluten-free to get rid of the rash. My rash disappeared completely just a few weeks after I went gluten-free. I have had a few flare ups, but I can always trace them to something I ate. I never went on Dapsone, but I will if I need it in the future. Good Luck. With years of gluten inside you, it may take a while to rid your system!

Hello, I'm a newbie, but I was wondering how you could take an oatmeal bath if that is one of the things us DH people are supposed to avoid?? <_<

Thanks

Tiny86

Link to comment
Share on other sites
oakpoint9 Newbie

I am very new at this, skin rahes, hives, and the bumps everyone is talking about on the hair line, no GI problems.

My mother had a allergy to Gluten, her's startered in the 70's.

I have tried to be gluten-free for the last week, but have slipped up.

My rashes have improved recently and I see an allerigest on the 18th.

I was hoping that people would share things like menus and phone numbers, (please casnco).

Heck, I had french fires this week and cottage cheese. It is overwhelming learning what works and what does not. Any help is welcome.

P.S. My mother passed away in 2001, the doctors were uncertian as to the source of her cancer, ovarian oor stomache, maybe I could teach them a thing or two.

Link to comment
Share on other sites
casnco Enthusiast

Oakpoint9

This is tough learning and I learn something new everyday. Fortunatly everytime I get some gluten now I do not get the rash.

Phone numbers - on the back of most packages there is a 1-800 #

The web has been my friend for most of my information. I put the company name in the search engine. Then search their sites. I have found in the FAQ section they frequently have already dealt with my question. Otherwise I just email them using the contact link. Usually withing 24 hours I get a reply. One exception was honey baked ham. So I won't eat it.

If you're jonesing form fries try McDonalds. They have dedicated friers. They are also one of the only places I will eat chicken breast from, but only as the breast, not on the salad. They cross contaminate it on the cutting board. Too Bad.

Good luck Oakpoint9. I'm off to the Ben & Jerry's site now. I need ice cream ;)

Link to comment
Share on other sites
casnco Enthusiast

Oakpoint9

Okay, I know the nutritional value of this post is little to none but we all need a few indulgences.

This is a copy of the reply from Ben & Jerrys I received today.

Link to comment
Share on other sites
Guest gliX

Sorry to be redundant from what other people wrote, but you will need to be gluten free for the rest of your life. If you have any questions about specific foods post them on this thread and we could tell you if they're gluten-free or not, or any additonal information.

In my case, I also had absolutely no symptoms, however, when I had my bioscopy I was told my intestine was completely inflamed from not being gluten-free, and if I had kept eating gluten then I would probably have severe health problems when I got older. It's a good thing you found out about it.

Link to comment
Share on other sites
Pegster Apprentice
Hello, I'm a newbie, but I was wondering how you could take an oatmeal bath if that is one of the things us DH people are supposed to avoid?? <_<

Thanks

Tiny86

I know there is controversy about oats. I don't eat them, because they seem to affect my DH somehow, but soaking in them works very well for me. I'm sure others will disagree with me, but every one reacts differently.

Link to comment
Share on other sites
  • 1 month later...
Marciatin Newbie

I found out I had HD in April of this year. I had the rash for 2 months trying to find out what caused it. After searching the internet myself and with the help of co-workers, (Science Dept at a Community College) we came up with HD and I shared my concerns with my Dr. who did the Biopsy at the rash site and confirmed my suspicians. I have been on Dapsone since the first of May and will have my first appointment since the diagnosis this June 17. The Dr. is keeping me on the Dapsone for 6 months and then we will see what happens, I have been gluten-free to the best of my knowledge since diagnosis. It is very hard and I am still learning. I have not had any new break outs since the Dapsone.

Be sure to ask a physician about Dapsone and pregnancy, don't take any chances.

For the rash I found Calamine lotion worked best for me. Before I was diagnosed, the Dr. did put me on prednisone and it cleared up the rash immediately, but the minute I stopped it, the rash was back the very next day. Cold packs also help the itching, but when you have it in your scalp, on both arms and knees, it a little hard to keep all the cold packs in place! LOL!

I have no GI symptoms and never have. So I look at the HD as a blessing in disguise, that maybe I've gotten gluten-free in time before any GI symptoms. My Mother died from Colon cancer in 95 and looking back on her life now, I am convinced that she had celiac and was never diagnosed, so was never gluten-free and all her health problems were probably from celiac disease.

I have met a woman in my town that suffers from celiac disease and she has been a tremendous help. Recipes, cookbooks support etc..

I could use any hints on baking with the gluten-free flours and mixes, I can't get things to turn out very well. All my breads and crusts are gummy and heavy, any suggestions? I had to laugh at my husband today, he was looking for something to take in his lunch, and I had some left over gluten-free pizza and offered it to him, he said "I don't think I would have enough time to chew it" I will leave on that note. Good luck and remaining totally gluten-free is the key.

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
      120,505
    • Most Online (within 30 mins)
      7,748

    Afton Horvath
    Newest Member
    Afton Horvath
    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

    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • 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.
×
×
  • Create New...