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Dapsone Day 2 and I am completely relieved of all burning itching pain and the sores actually appear to be healing.

I really really hope I can be one of those who can take this medicine without the anemmia and liver problems.

But if not I am going to make the very best of these two weeks on it that is for sure.

Just wanted to share with you all.

I never thought I would have relief.

It's kinda like being let out of jail... :)

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Dapsone Day 2 and I am completely relieved of all burning itching pain and the sores actually appear to be healing.

I really really hope I can be one of those who can take this medicine without the anemmia and liver problems.

But if not I am going to make the very best of these two weeks on it that is for sure.

Just wanted to share with you all.

I never thought I would have relief.

It's kinda like being let out of jail... :)

I am glad to hear you are feeling so much better!

Just wanted to send you that info about iodine in foods. It was in an article about Hashimotos, however I am betting it could be helpful for DH too. Here is the link: http://www.suite101.com/content/vegetables-containing-small-amounts-of-iodine-a187261

I helped a chef on celiac.com who had DH by advising he take Burdock Root. This may or may not work for you since it is partly a stimulant. However Dandelion Root is not a stimulant and could help. It clears the liver which often is messed up when the skin is having problems like yours. It certainly helped me. Parsley might also be of help. Plus of course exercise, saunas etc. -- once the gluten and iodine problem are under control of course.

Years ago I had DH like pustules without the itch--after which I mostly went off the gluten. I didn't know til 3 years ago I needed to go off trace gluten. I thought it was an allergy. My skin got better and my kidneys stopped getting destroyed, however I still got ill much too easily, long and often.

The last few years however I developed salicylic acid sensitivity to the extent that it created itchy hives and blisters and crusty flaking skin as well as not sleeping at night due to sore nerves and fibromyalgia like sypmtoms. For me it has taken going off the heavy to medium level salicylic containing foods to get past that--which actually I still am working through since sal is in almost everything...

I am imagining that foods containing too much iodine will be a lot easier to avoid.

Good luck!

Bea

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Glad to hear you are getting some relief with Dapsone. I have my fingers crossed that you will be able to tolerate it. Please keep posting your progress. I'm very interested.

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Bea, Thank you for all that information. It is very helpful to me. I also have a swollen thyroid and am suspecting Hashimoto's, but the Dr. isn't as my thyroid levels were "normal". I have to schedule an ultrasound as they think it might be nodules or cancer since the hormone levels appear to be normal.? :huh: But I think that can happen with Hashimoto's. I'm still learning.

By the way, I posted to you some time ago about Salicylates...because unfortunately I'm one of those who is sensitive and has to watch how much of that I eat. It is difficult but I am learning to just keep letting things go... :blink:

Guess I now need to update my signature..Gluten, Salicylate, Soy, Iodine, Shellfish, I don't know where it all ends.

Running Girl, I'm very interested in your progress too. You were thinking of trying Dapsone and I'm curious if you did or if you are still considering. I hope you are doing better and I'd like to know if you are getting relief from being Guten Free.

Hopeful, Thank you for warning me about the headaches you got from Dapsone. I had one yesterday. I'm hoping it was nothing but fear it might be related. <_<

Anyway, got up this morning and had coffee and I have a lightness inside me from this reprieve from the sores...I'm able to be busy and feel really good because I slept without pain or itching. ;)

I really miss tuna sandwiches with chips but for now don't want to eat anything that might activate the lesions.

Thank you for all your support.

I appreciate all of you guys.

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I'm going for another biopsy on Monday. I would like to try Dapsone, but don't think my GP will prescribe it without a definitive diagnosis. I've been Gluten free for almost two weeks now. I'm also greatly limiting my iodine (thanks for this advise). So far, I'd say I am more convinced this is food related. I still have plenty of lesions and the rash has spread to some new areas on my body but I do notice that certain times are worse than others. For instance, I had noticed that I wasn't itching near as much but then ate out at a restaurant. I thought I had ordered well, but by the time I got home my skin was on fire. By morning I had a whole new crop of bumps.

Finding things to eat has been fine and I have my first loaf of very expensive, gluten free bread in the maker now. :D

I'm so thankful for the support and advise I have found in this forum. I know the people around me don't want to hear about my troubles. You know, "it's just a rash"...

Take care! Brenda

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Hi you guys, I am glad the Hashimoto's info on iodine was helpful. Really the idea is to Prevent it from fully manifesting--so going off the iodine rich foods now could really help. Plus of course gluten etc. Many of these auto-immune conditions are inter-related, especially with gluten intolerance.

I am actually now wondering if some of my itchy b%$@#ies are DH. Clearly some of it is due to salicylic acid. Taking benedryl at night has almost become imperative for me to sleep so I don't flail around. It also reduces the bumps, swelling scaling, hives and itch. But it really makes me wonder since I am avoiding salicylic foods and it still is happening even though it has lessened greatly.

Any thoughts on this--esp. eatmeat4life??

Bea

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Hi Bea,

You have been gluten free for a long time.

But still having itchy rash.

Maybe it is time for you to watch the iodine that keeps the antibodies activated?

The more I learn about DH, the more imperative that seems. Like iodine can keep you reacting even without the gluten.

Also, it becomes more active at night...hmm suspicious.

Maybe you DO have DH.

I first attributed my sores to salicylic acid...but after a year of avoiding that I still had outbreaks.

Now I know it is DH. I think there is a range of presentations for the sores, but the common symptom of intense burning, stinging, and/or itching causes me to suspect DH. I don't think there is any other rash that causes such intense discomfort.

It seems it would be worth a try for you to avoid the iodine too and see if it helps your itch.

Or ask Doc about Dapsone.

You probably wouldn't test postive on a biiopsy since you are gluten free, but you could try.

Or at least ask the Dr. if they think it could be DH.

I swear DH is a puzzle that took me 7 years to figure out.

But I never would have avoided fish, shellfish, iodine, AND gluten all at the same time unless I had read about others reactions here. It has saved me.

If you are that miserable at night Bea, I'd ask to try the dapsone if you dare.

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Hi Bea,

You have been gluten free for a long time.

But still having itchy rash.

Maybe it is time for you to watch the iodine that keeps the antibodies activated?

The more I learn about DH, the more imperative that seems. Like iodine can keep you reacting even without the gluten.

Also, it becomes more active at night...hmm suspicious.

Maybe you DO have DH.

I first attributed my sores to salicylic acid...but after a year of avoiding that I still had outbreaks.

Now I know it is DH. I think there is a range of presentations for the sores, but the common symptom of intense burning, stinging, and/or itching causes me to suspect DH. I don't think there is any other rash that causes such intense discomfort.

It seems it would be worth a try for you to avoid the iodine too and see if it helps your itch.

Or ask Doc about Dapsone.

You probably wouldn't test postive on a biiopsy since you are gluten free, but you could try.

Or at least ask the Dr. if they think it could be DH.

I swear DH is a puzzle that took me 7 years to figure out.

But I never would have avoided fish, shellfish, iodine, AND gluten all at the same time unless I had read about others reactions here. It has saved me.

If you are that miserable at night Bea, I'd ask to try the dapsone if you dare.

Thanks for your encouragement eatmeat4-life. You are making me think that I really should investigate this matter with iodine more. I hate it about these niggling hunches I get. However more often than not they turn out to be worthy of investigating. I have avoided learning much about DH until recently. I just did not think it applied to me. But now I am increasingly wondering if that has been wise.

I also have to admit I am less than enthusiastic about doctors in general give my frequent lack of success with many of them in the past. How did you find a good doc by the way??

As far as a test goes however, it could possibly work out since I have had much more frequent experiences of cross contamination (which exhibits as migraines) these last two months since I have been living back at my mother's. The migraines haven't lasted as long as they used to thankfully--only one day instead of three or more--though its been occurring far more often than when I didn't live here. The CC seems to stir up other symptoms too sometimes, like recently painful ganglion lumps appearing on the top of my hip bones and L-5 vertebrae (an old injury acting up). No matter what, I think I have been glutened enough these last two months for a bowel antibody test, but doubt that would convince the AMA.

Of course I am thinking about leaving this place again just to preserve myself. However I will have to get someone else to take my place--which isn't just an overnight thing. My brother is getting better but even at the best of times he is not the most nurturing person in the world. He needs help taking care of our aged mother as well as this rambling house here in the woods. He is recuperating from a bad bicycle accident. Although he is getting better quickly, the docs distrust his ability to drive. Unfortunately he is the biggest reason I have been getting cross contamination with gluten since he refuses to change some of his habits--so I am now eating in the kitchen downstairs.

I am in a bit of a bind since I don't really want my mom to live in a board and care--like our sister the nurse wants her to. Fortunately Mom is far stronger and more able than the average 95 year old--even though I think she may also have DH and some memory loss due to gluten sensitivity (though I have yet to convince my family about that)-- which my mother continues to think she outgrew.

I suppose I should start avoiding kale and cabbage--I would miss them--but am willing to give it a try. I do like eating baby bok choy and brussel sprouts--other members of the cabbage family. Sheesh. Without broccoli too I am left with green beans, celery, iceburg lettuce, green onions, chard, parsley, and what else? Am forgetting if spinach is OK or not. I guess I will need to do trial and error and see what works, keeping an eagle eye out for symptoms. Chinese peas seem to be out too. I am very allergic to carrots by the way. I suppose I should start sprouting mung beans and lentils etc. I am grouching, however I would love to get rid of this skin condition--which if that happens I will be grateful no matter what I give up.

It is very possible I could have reacted to eating kale two days ago. Certainly the itchy b%$@#y symptoms came back that night.

Eating cooked bananas occasionally may or may not be OK. Am in a wait and see on that. Ditto with peeled ripe pears. Cooking seems to help with both fruits.

What happens to you when you eat fish?? And shellfish? Is shrimp OK for you?? Is it the mercury that bothers you? Or is it possible iodine??

I really don't know about trying dapsone--so I am not actually sure I should take up your dare. I have damaged kidneys and don't really want to put stress on them. I don't do well with a lot of medications. The benedryl as well as dietary changes does make this condition more bearable. My ears at least are so much better. If it gets really bad I will consider it. No matter what diet seems to be the real cure--and its possible dandelion root tea may help. Meanwhile though I am glad the dapsone is giving you much needed relief.

Bea

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I swear DH is a puzzle that took me 7 years to figure out.

Wow, that was a fast diagnoses of DH... In my case it was 56-1/2 years(lifetime @ the time for me), 4 Dermatologists in the last 30 years and lost count of the many Doctors my parents took me see... Dapsone was a wonder drug for me, but there were many blood tests involved... I always get a copy of the lab work and share it with my other Doctors, the GI finds it very useful...

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Oh my Captaincrab...I guess I will stop complaining about how long it took me and start feeling grateful for what I now know.

That must have been terrible. Glad you are better now. Doctors and dermatologists are infuriating.

Bea, I wasn't trying to dare you to take Dapsone, I was just saying "if you dare" due to the blood tests and side effects.

As to iodine. I absolutely cannot eat shellfish. They are very high in iodine. One shrimp activates all the lesions. Same for any shellfish, I tested them all because I love them. But no more.

Haven't tried salmon or white fish but tuna does aggravate the sores quickly.

When they heal I might try salmon.

And as to your question about finding a good Dr.?

I don't know. I just started with a new Dr. told her I have Celiac and want to take Dapsone for the rash. She gave it to me. I guess that makes her a good Dr.

Never had a biopsy or anything as the dermatologists over the years refused and called it neurotic excoriation.

The best Dr. for DH is Celiac.com where all of my information on Dermatitis Herpetiformis information comes from.

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I don't know. I just started with a new Dr. told her I have Celiac and want to take Dapsone for the rash. She gave it to me. I guess that makes her a good Dr.

Before my Dermatologist would prescribe Dapsone, he wanted to see a base line blood lab... Only after reviewing my Lab results did he call in a prescription.. Than it was weekly labs for the first month and now every 3 months

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Wow! She said call me in two weeks and we will increase you 100 mg a day if 50 mg isn't working.

Not a single mention of blood tests.

But I plan to ask for them based on what others here have said.

Thank you my Captain!

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Wow! She said call me in two weeks and we will increase you 100 mg a day if 50 mg isn't working.

Not a single mention of blood tests.

My Dr started me on 25mg for the first month, now I'm allowed to double that as needed.. I try to keep it @ 25mg, knowing that it may cause some nasty side effects..

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Wow, I guess I lucked out. My dermatologist took one look 30 years ago and told me I had DH. He was right, but he didn't know at the time about the DH-celiac connection.

You absolutely must have blood tests for a while and an occasional liver panel. Bad side effects are very rare but need to be watched for.

richard

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Thank you Richard.

I've read your post before that your derm took one look at you and told you what it was. I used to have fantasies that it would happen to me. That they would say Aha! I know what you have!

But it never happened.

I've spent thousands on Dr.'s and derms who told me I did this to myself. neurotic excoriation.

I have PTSD nightmares about it.

Anyway thanks for the tip about testing. I do plan to follow up.

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Oh my Captaincrab...I guess I will stop complaining about how long it took me and start feeling grateful for what I now know.

As to iodine. I absolutely cannot eat shellfish. They are very high in iodine. One shrimp activates all the lesions. Same for any shellfish, I tested them all because I love them. But no more.

Haven't tried salmon or white fish but tuna does aggravate the sores quickly.

When they heal I might try salmon.

And as to your question about finding a good Dr.?

I don't know. I just started with a new Dr. told her I have Celiac and want to take Dapsone for the rash. She gave it to me. I guess that makes her a good Dr.

I agree with Richard, you must absolutely have blood tests, weekly for the first month then monthly after that. I had no problems with my bloodwork, but I had the other side effect, which is extreme muscle weakness. I couldn't walk without being out of breath and tired, and I pulled more muscles than I knew I had. I couldn't exercise and gained weight. I heard a story on these boards of a runner who had to give up running because his muscles were so weak. I was on dapsone for about 9 months and went off slowly, and it took me abother 6 months to get y muscle strength back. However, now that the gluten is out of my system I can eat iodine and shellfish with no breakouts. I didn't know if you knew to stay away from NSAIDS too, like Advil and Aleve. Both NSAIDS and iodine can aggravate your DH, but only when there's already gluten in your system. Strict gluten-free diet = you can eat iodine again, but if you think you've been glutened stay away from it for a week until the gluten gets out of your system. Good luck!

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I wasn't told about the NSAID connection.

That means I must have made it way worse for several years because I took NSAIDs for the pain of the sores I couldn't heal. And I took it every day.

Oh wow. I will stay off the NSAIDs.

I do not like hearing about weight gain or muscle weakness but thank you so much for the warning.

This is my second week and I have only one tiny sore left.

Does anyone only take this drug when they have outbreaks?

I'm not sure if I should stay on it but it certainly has given me peace for now.

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I wasn't told about the NSAID connection.

That means I must have made it way worse for several years because I took NSAIDs for the pain of the sores I couldn't heal. And I took it every day.

Oh wow. I will stay off the NSAIDs.

I do not like hearing about weight gain or muscle weakness but thank you so much for the warning.

This is my second week and I have only one tiny sore left.

Does anyone only take this drug when they have outbreaks?

I'm not sure if I should stay on it but it certainly has given me peace for now.

If I didn't have those nasty side effects, my goal was to stay on it for a year and then taper off. I'd heard that it takes about a year for DH to totally clear up on its own (no dapsone), but that may be just anecdotal. I would think about how long you want to stay on, then taper off the drug (take 1/2 pill a day for a week or 2, the 1/4 per day for the same time). Did you know there is a topical dapsone? It's called Aczone and it's for a certain kind of acne. It's really pricey, but I have afew sample tubes from my dermatologist that I used on some particulary long-existing sores. I didn't have any active lesions so I couldn't check it. Search the forums for 'aczone' and you may get more results. Congrats on feeling better!

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I'm really glad to here the dapsone has worked and your sores have healed. The information about NSAID is very valuable. I will certainly add to my avoid list.

I'm still waiting for the results of my second biopsy, but in the meantime my strict gluten free - iodine reduced diet seems to be doing the trick. In the last few days my sores are clearing up. They were on my arms, legs, back, torso, hands and scalp and suddenly they are all disappearing. :)

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Just to complicate the matter, I have to say that I have been using aspirin (an NSAID) regularly, and I haven't noticed any negative effect, all positive.

But, after three weeks of healing, I had some saltwater fish three days ago and suddenly I'm relapsing a bit. Do other people find that the reaction takes that time, or should I be looking for some food I've eaten more recently.

BTW, thanks folks, it's been an interesting thread.

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Hey Running Girl! I was wondering how you were doing!

I hope you will post when your biopsy results come back.

I am so pleased to hear that the gluten and iodine avoidance is working for you.

Mine went on so long that I think I must have extra antibodies built up.

But this week I only have two small sores.

If they weren't on my face I might not take Dapsone, but it is working.

I'm just a little paranoid about the side effects.

I'm going for a blood test next week.

Itchy- That is strange that aspirin and NSAIDS work for you.

I took them a long time for the pain of the sores...then found out I was allergic to them.

Not anaphalactic shock allergic, but had the symptoms of chronic aspirin toxicity due to taking it every day to deal with the pain of the DH sores.

I broke down and ate a tuna sandwich one day. I regretted it terribly.

No more fish for me. I guess that is why my name is Eat Meat!

Yes, it has been an interesting thread.

Thank you all for your replies.

I have really learned a lot here.

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So much of this depends on the individual. I never avoided NSAIDS and never avoided seafood. And I had no trouble with the DH after I went gluten-free.

As for the blood tests for Dapsone, you need frequent tests at first, but once you've been tested with no negative results for a while, you don't need them as often. I think I was getting them just once a year after a while. I took dapsone for more than 20 years.

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I think the iodine issue becomes more tricky for those of us choosing not to use Dapsone.

If I'm not mistaken, Dapsone will make the lesions disappear even in the presence of iodine, but for non users of Dapsone iodine may be still aggravate the condition.

I'm still experimenting my diet to see if iodine is an issue for me. One saltwater fish meal on the weekend was followed by a small breakout of my lesions, but there may have been other factors, so I'll wait a few days and try again.

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