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Jaxonthehuman

Iodine

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I was diagnosed with DH in Oct. through a biopsy. I have been gluten free since Oct. 15 (two and a half months) and am still getting new sores. I feel confident that I have eliminated all gluten, I called by rx manufactuers, cleaned out my house and fridge, replaced toaster.

I read Idodine will prevent my rash from clearing up. but I looked up high iodine foods, and it seems its in everything. what should I be eating? I dont mind a simple diet of just a few foods, but i dont even know what to eat?

I tried dapsone, but after 3 blood draws, my derm took me off of it.

then I went on prednisone for 10 days and it did not help.

I am now on day 3 of sulfapyridine (500 mg) is that dose too low?

im not responding to any meds. is the iodine keeping me from healing?

i just want to stop itching. I only sleep about 3 hours at a time. anyone else sleep like this? its exhausting.

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Hi Jaxon,

Some observations: I would have thought you would be improving after two and a half months, but it isn't unusual to get new lesions even on a gluten free diet. Several of us have had that experience.

I'm sure others will comment on iodine, but I think that they will say that reducing iodine will help even if not all the iodine is eliminated. (It is dangerous to eliminate all iodine over a long period). For my part I have never been able to notice any effect from iodine in my diet, so eliminating iodine isn't guaranteed to help. But worth a try.

Just a suggestion: It takes a long time to learn to be truely gluten free. Maybe you've already done it, but it might help if you have someone else who is a long term celiac have a look at what you are eating. You might be missing something. I think we've all had the experience of finding that one of our favourite foods is full of gluten, long after we thought we were gluten free.

Finding relief seems to be trial and error. And waiting. The only thing that helped me was keeping the affected areas slathered in various creams and lotions that served to keep the areas moisturised. But there are a range of theories.

Some people find relief quite quickly. For me it has been almost exactly two and a half years from onset to the point where I am almost symptom free. It can be a long haul.

Best wishes.

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Take a look at you diet. Look up "salicylates" and seeif you are eating foods on that list. They gave me trouble and I itched like a mad dog until I eliminated them. Also, are you taking a probiotic and a L-Lysine supplement? I was having terrible trouble with yeast and cranker sores which I feel the L-Lysine took care of.

I have been on an iodized med for the past 6 months and I did not notice it contributing to my itching issues. Been off less than 2 weeks ad have not noticed it changing my issues with itching. I do however avoid salt just because of everything I have read about it and know how bad it is for you. I use seasalt instead and find no difference in taste between the two.

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But sea salt is high in iodine if he's trying to cut down on the iodine. Buy kosher, non iodized salt.

Eat egg whites, apples, avoid all processed foods, eat beef, chicken, pork but not ham or bacon or sausage with a casing. I eat Jimmy Dean original pork sausage fully cooked patties. Eat fresh fruit & veggies. No spinach, lima beans, turnip greens, asparagus as they are high in iodine. NO dairy unless you go for "stinky" cheeses which are the very "hard" cheeses. Eat peas, rice, potatoes but NO skin on the potatoes as it has iodine.

Look up thyca.com for the low iodine diet.

We FEEL for you. We REALLY do. We've been there, done that!

Blessings

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For me I was able go get my DH under control by avoiding :

sea food

dairy

iodized salt, I do use sea salt in limited amount with no problems

ham and other processed meats

vitamins with iodine

The last major out break I had was after I had been gluten free for over a year. The outbreak occurred because I was taking a mult vitamin that had the recommended daily amount of iodine in it . I thought I would go nuts ,from the itching and no sleep , until I discovered the culprit.

If you are taking thyroid meds , they have iodine in them.Iodine is a necessary mineral for us and for thyroid health .

I have Hashimotos . My thyroid is all but destroyed from the hashimots and I take thyroid meds daily. I also have diagnosed DH.Finding a balance between what iodine my body needs and what I can tolerate is ( to say the least) DIFFICULT but in my case necessary.

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Thanks!! I went to a diatician and went over some of the foods in my diet. I also found a gluten intollerance group in my city that hooks newbies up with more experienced mentors. I don't have a mentor yet because meetings are just once a month and I found it just a few weeks ago. Very excited to talk with a fellow DH sufferer though.

One other thing that has helped a lot is an IPad/iPhone app called "Is that gluten free" it covers all the hidden sources and has handy charts. But mostly I've been trying to eat fresh fruits and veggies, meat, and things labeled gluten free. I guess I'll just hang tight, like you said, it could be awhile.

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I was diagnosed with DH in Oct. through a biopsy. I have been gluten free since Oct. 15 (two and a half months) and am still getting new sores. I feel confident that I have eliminated all gluten, I called by rx manufactuers, cleaned out my house and fridge, replaced toaster.

I read Idodine will prevent my rash from clearing up. but I looked up high iodine foods, and it seems its in everything. what should I be eating? I dont mind a simple diet of just a few foods, but i dont even know what to eat?

I tried dapsone, but after 3 blood draws, my derm took me off of it.

then I went on prednisone for 10 days and it did not help.

I am now on day 3 of sulfapyridine (500 mg) is that dose too low?

im not responding to any meds. is the iodine keeping me from healing?

i just want to stop itching. I only sleep about 3 hours at a time. anyone else sleep like this? its exhausting.

Hello Jaxonthehuman,

Sorry for your continued " new lesion " experience. Here's an article that my future wife came across researching and diagnosing DH in myself that you may find some value in:

http://www.gluten.net/learn/dermatitis-herpetiformis.aspx

I wish you the best with healing and controlling your DH,

WF

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I am sensitive to iodine, and at 2 months gluten-free I found following the thyca diet put mine into fast remission. I was strict for 2 weeks (except a bit if butter) and saw immediate results.

There are a few caveats, at least for me...corticosteroids seemed to interfere with the healing of the rash. Going off them 100% was ugly, but necessary (including topical). Colorings/preservatives (salicylates) seemed to make it flare. A lot of things made it flare in the beginning....

My big triggers are still egg yolks, dairy and carageenan. Too much (like at Thanksgiving) made me flare a bit. And repeated cc exposure (eating out) seems to get me. Eating out 1x per week is ok, more than may get me. And sushi is a "no iodine for 48 hours surrounding the meal" event.

Everyone is different. Keep the lesions moisturized, and I reco making sure your body care products are gluten-free. Check your supplaments, too. My multivitamin had iodine in it which is how I figured out the iodine sensitivity.

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Also, I would like to add that personally, for me, at this early stage of being gluten free, I ABSOLUTELY will not touch any of those products labeled "gluten free" UNLESS they also state that they are processed in a GLUTEN FREE FACILITY. There is NO WAY I want to take any chance of getting any CC from anywhere! I need to be completely itch free for a long time before I care to risk even the tiniest return to "itching hell".

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But sea salt is high in iodine if he's trying to cut down on the iodine. Buy kosher, non iodized salt.

Hum? I don't know about all sea salt but Morton's course sea salt says right on the bottle that it does not have iodine.

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Iodine was a big problem for me in the early days. Now I can tolerate it in moderation.

I am one of the "all over" DH suffers so I think that has a lot to do with it. My theory/hypothosis is that that the more gluten in the system the longer to discharge it and hence how long iodine will have an effect on DH. I ate prawns(shrimps) 3 months ago and immediately reacted. This xmas I ate prawns and it was far less of an effect(less effect in terms of time and intensity). I am otherwise very strict with my diet so I can gauge effects of newly introduced "extras".

If you are iodine sensitive DH then you need to be patient. If you are like most of us then you will have new lesions for some time. I am gluten free (with lots of mistakes) since June and strictly (including xantan gum and other known as "gluten free" additives) since early Oct11. It isn't easy but be assured that there are a few of us here to help you out with questions and issues along the way.

I still have new lesions now and my brain and sanity suffers some times/days .. be patient because this is the place to go when it seems a bit crazy.

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My Diamond Crystal Fine Sea Salt says that it does not contain iodide.

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My Diamond Crystal Fine Sea Salt says that it does not contain iodide.

Most sea salt (I've never seen one that ads it, frankly) does not contain ADDED sea salt. I think they put that in there since people are used to table salt containing added iodine.

My sea salt (Redmond) says it contains .002%.

I have a French Celtic grey salt (imagine the oddities of that one) that says it does not contain iodine.

I think the content may vary based on where it is gathered. I really don't know...

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I have seen sea salt with added iodine, I think it's by Hain, and Morton also has iodized sea salt. I've actually been using non-iodized 'regular' salt for the last few weeks, due to suggestions on the thyca low-iodine diet. But, reading the article that AVR1962 linked, I may try adding back regular (non-iodized) sea salt soon, since I prefer it.

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Iodisation of table salt isn't practised as intensively everywhere as in the US and Canada.

In the UK most table salt is apparently not iodised as near as I can tell, and the standards for iodisation call for lower amounts to be added.

That makes sense because iodisation was a programme to cut down on iodine deficiency diseases resulting from low iodine content of foods grown far from the sea (often in the interior of North America).

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My DH took a full year to heal and I was strictly gluten free. I found reactions from shellfish, iodized salt, benzoates, salicylate, and food coloring. I followed the thyca.com diet to lower iodine. The expert Peter Green says some DH patients take a full 2 years to heal and sometimes reactions can happen even if you are strictly gluten free. Check out salicylate sensitivity, limit iodine, be extreme about avoiding gluten, and for the pain you can use Benzocaine containing products like Bactine, Walgreens Pain Relieving Ointment, or Solarcaine spray depending on where your sores are. It gives temporary relief but helps you to get some sleep. There is also a lidocaine creme your Dr. can prescribe for the misery of the pain, burning and itch of DH.

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