Can Someone Explain The Iodine Thing?

[LindsayS]

I have DH and it is controlled with a gluten-free diet. It isn't always completely gone but that is probably because I get trace amounts of gluten. But it is definitely tolerable when I am gluten-free. I am just wondering what the link to iodine is and what I need to look for if I am avoiding it. Obviously iodized salt, but what else? Do all people that suffer with DH have a sensitivity to iodine?

[lovegrov]

I suffered from DH for years but after gong gluten-free iodine never affected me in the least. It all depends on the person.

richard

[squirmingitch]

Iodine affects both myself & my hubs in a big way. There have been many here who have problems with their dh in relation to iodine. But that's not going to do much good unless you are completely gluten free.

Iodine has been medically recognized to aggravate the dh. If you go low iodine then you will probably start noticing a difference within about 3-4 days & get much better in 10 days.

Here is a link to the low iodine diet so you can see what foods you need to eliminate. Your vitamins may contain iodine so check them. I use Solgar brand "Vitamins Only" which contain no iodine, soy, gluten, artificial flavors or colors, etc...

Open Original Shared Link

After iodine, salicylates are the next big factor affecting dh flares & aggravation. Here are links about salicylates (sals).

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Open Original Shared Link

I can't find the link to the reference right now & have to run but I read one medical paper that stated in essence IF one could eliminate ALL iodine then dh would not present even in the presence of gluten. It's like gluten is what causes dh but iodine fires it up.

[itchy]

I've never been able to detect any correlation between iodine in my diet and my DH. Perhaps it is there, but not so great an effect that it makes itself evident.

I think there is a lot of variation between people, so making the assumptions one way or the other without experimenting a little is probably not a good idea.

[ravenwoodglass]

My DH got much better without deleting iodized salt when I first went gluten free. After a couple months I also dropped the iodized salt for a couple of months. Not everyone is going to have an issue with iodized salt and most do not have to eliminate foods that naturally have it. If you DH does not improve then go ahead and drop it but do add it back before too long as it is a needed nutrient.

The antibodies can stay in the skin for up to 2 years after you go gluten free. For me an outbreak was the first sign I had been CC'd for the first year or two gluten-free. Now it is the last thing to show up and I usually only get one or two tiny blisters and I have to be continually being CC'd for that to happen.

I hope you heal quickly as DH is certainly not pleasant.

[squirmingitch]

Here are some links with info. on the iodine connection:

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[rosetapper23]

I've been reading this forum for years, and I haven't read a single posting (except mine) where a poster mentioned that eliminating iodine ALONE could control DH. However, I'd like to point out that it doesn't appear that anyone ever made the connection whatsoever to iodine before discovering that gluten was also the culprit. Therefore, no one did what I did; namely, eliminated iodine exclusively without eliminating the gluten.

When I was 30, I developed DH after a stressful event. Even though I'd suffered from extreme nutritional deficiencies all of my life, I had no idea I had celiac. After suffering with the DH for four years and having dermatologists insist that it was simply an extreme case of acne, I read an article that explained that some people break out in itchy blisters when ingesting iodine. It also pointed out that iodine could be present in dairy products. I immediately eliminated all iodine sources, including dairy, and the DH cleared up immediately (except the horrendous scars took years to fade away). Many years later when I learned I had celiac, I read, "Celiac Disease: The Hidden Epidemic," by Dr. Peter Green, and that's where I read that there is a connection between DH and iodine/gluten. It finally clicked!

I was completely DH-free until my thyroid failed following a bout with chemo when I was 50. Now that I take thyroid medication that contains iodine, if I encounter even the slightest gluten contamination, I break out terribly in DH all over my face and neck. So, for me, iodine MUST be present in order for the DH to appear. Eating gluten while eliminating iodine completely protects me from DH outbreaks. Eliminating ONLY the iodine works for me, and it also works for my 25-year-old son. Once he learned that avoiding iodine completely could allow him to eat gluten without causing a DH breakout, he felt he could, in fact, occasionally cheat. He's acting stupidly, of course, but he serves as additional evidence that avoiding iodine alone (at least for some people) can keep a person DH-free.

Apparently, everyone is different....but I do wonder if everyone who has DH actually MIGHT be able to control their DH through solely eliminating iodine. No one on this forum will ever know because I can't see anyone wishing to ingest gluten again to test the theory. For me, however, the worst part of the equation is the iodine. As I've mentioned on other threads, the gluten lights the fire, but the iodine keeps it burning for months. I accidentally got glutened four months ago, and the DH continued to erupt for three months even though I'm absolutely certain that my diet was gluten free. It's because of the darned iodine in my thyroid medication that the DH just kept erupting, and now I have terrible scars to deal with all over again.

I know many of you will disagree that iodine plays such a major role in DH...but, really, how do you know if you haven't done what I have? And, no, I don't want you to test my theory. I'm just saying, you have no way of knowing one way or the other if what I have said applies to everyone. Only a study can prove it, and I can't imagine anyone wanting to participate in such a study. However, I tend to believe that BOTH gluten and iodine must be present for DH to occur, and if you eliminate one part of the equation completely, it cannot erupt. Again, just my own opinion.

[eatmeat4good]

I healed a little by being gluten free, but the rash and sores stayed there until I got serious about limiting iodine. Thyca.com was the only way I could do it. I had no idea that canned goods had iodine in the lining until I went there. It helped me so much. If iodine is a problem for you, you will be able to tolerate it later, but only after the sores heal. I can use iodine now but really noticed the sores burning and itching if I consumed iodized salt accidentally for example. One must be totally gluten free for iodine limiting to work.

The antibodies can stay in the skin up to 10 years...according to Dr. Peter Greene, and it takes some people up to 2 years to heal.

It took me a year and a half.

But now I'm healed.

You just have to experiment to see what aggravates your DH.

You should easily know if Iodine is a problem for you with a brief elimination and then a challenge.

[IrishHeart]

I know many of you will disagree that iodine plays such a major role in DH...but, really, how do you know if you haven't done what I have?

I agree with you, Rose.

And I know what EatMeat4Good had to do to get hers to stop flaring.

She reported it to me nearly every other day for a year. But she did it!

I asked SQUIRMY and MEATIE to jump in here because I know they have dealt with this.

from Celiac Disease: A Hidden Epidemic by Dr. Peter Green and Rory Jones:

"DH is very erratic. Since the skin may not be rid of IgA deposits for more than 2 years after starting a gluten-free diet, flare- ups occur without obvious gluten ingestion. It may take patients a substantial amount of time to erase years of IgA buildup in the skin.

A flare could also be due to inadvertent gluten ingestion, iodine, NSAIDS.

Opinions vary as to whether topical lotions and creams have ingredients that might trigger a reaction and stress may exacerbate the flares, although there is no science behind the stress link.

If the patient has DH, it may take years for it to get better."

If there is one thing we all know about celiac disease, it is that everyone is different and "no rules apply"--but in some cases, iodine seems to be a factor.

[eatmeat4good]

This is copied from the body of the article in the following link. I guess that is where I saw the antibodies can stay in the skin for up to 10 years. If it wasn't Dr. Green, I had to find who said it for ya!! It is near the end of the article.

Neither IgA deposition nor circulating antibodies correlate with gluten intake in short-duration studies; however, some studies have suggested a correlation with complement deposition. Avoidance of dietary gluten for 10 years or more has resulted in loss of cutaneous IgA deposits, which then return upon reinstitution of gluten in the diet.

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[rosetapper23]

eatmeat4good,

That certainly explains why my DH "awoke" and completely destroyed my face and neck after I got glutened--it's been only eight years since I went gluten free.

This horrible flare-up may be my last--my previously localized breast cancer metastasized to my lymphatic system only weeks after the accidental glutening, and my oncologist believes, as I do, that the glutening caused my immune system to collapse and encouraged the spread of the cancer. People on this board are always asking if cheating can be tolerated sometimes--I'm living (or perhaps dying) proof that, no, it's never wise to cheat and it's imperative to be as careful as possible to eat gluten free for life. I've always said, "It's not the cancer that will kill me; it's the celiac that will do me in." I guess it's a chicken-and-egg sort of thing, and perhaps they're working together.

[eatmeat4good]

eatmeat4good,

That certainly explains why my DH "awoke" and completely destroyed my face and neck after I got glutened--it's been only eight years since I went gluten free.

This horrible flare-up may be my last--my previously localized breast cancer metastasized to my lymphatic system only weeks after the accidental glutening, and my oncologist believes, as I do, that the glutening caused my immune system to collapse and encouraged the spread of the cancer. People on this board are always asking if cheating can be tolerated sometimes--I'm living (or perhaps dying) proof that, no, it's never wise to cheat and it's imperative to be as careful as possible to eat gluten free for life. I've always said, "It's not the cancer that will kill me; it's the celiac that will do me in." I guess it's a chicken-and-egg sort of thing, and perhaps they're working together.

I'm so sorry to hear about your cancer. You posted about a cancer return in another thread and I cringed for you thinking that I hoped it was not Celiac related Lymphoma. I see now that it isn't lymphoma, but for all the years you have struggled with DH, I sure am sorry you had this happen. You help people so much with your posts about DH. I for one have truly benefitted from your experience and knowledge about dealing with DH. I wish you well with the cancer treatment. It's scary and horrifying. If you read that article...well, I thought twice about posting it because in there they also say that DH is rare on the face and you and I and both of our son's if I recall correctly have DH on the face. And they say in that article that the palms and soles are spared from DH, but I seem to recall that you and your son have had it there too. There is so much to learn about DH. But your contributions here are invaluable to me and many others. Just wanted to say thanks and to wish you well. I'm sure the OP won't mind me making this comment to you here. It seems appropriate to me. Take care Rosetapper. We are rooting for you.

[rosetapper23]

Eatmeat4good,

Thanks for the personal reply--I hadn't expected to say anything, but I just had a chemo treatment, and afterwards I tend to feel despondent. Every time I look at the recent DH scars on my face, I'm reminded of how one misstep (glutening) caused my world to change forever.

Back on topic, though...you're right. My son and I both get DH on our faces and necks, and sometimes we also get it on one hand and the sole of the opposite foot. So, even though the medical literature states that the lesions always appear symmetrically, my son and I deviate from the "norm" in that we each get it on only one hand and the sole of one foot. However, the lesions do mirror each other on our face and neck--we get them in identical locations on both sides. Over the years, I've read many posts where the posters have indicated that the DH is on their faces, so I don't think it's as uncommon as the medical literature would have us believe. Quite honestly, I believe the medical community knows very little about DH (I know this isn't a surprise to you). Perhaps researchers should start with the personal stories related here on this forum (??). What an eye-opener it would be for them!

My friend, thank you for your concern and support...and very kind words. I hope that, with luck and Traditional Chinese Medicine (since modern medicine has failed me), I'll be able to contribute to this forum for a little bit longer. I find a lot of solice in the wisdom shared here.