Newly Gluten Free - Need Input

[AustinDH]

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

[plantime]

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!

[tarnalberry]

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.)

[lovegrov]

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

[Pegster]

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!

[FreyaUSA]

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!

Welcome to the board!

[ravenwoodglass]

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

[cdford]

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.

[casnco]

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.

[tiny86]

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

[oakpoint9]

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.

[casnco]

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

[casnco]

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.

[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.

[Pegster]

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.

[Marciatin]

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.