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Jortyle

Dh After Going Gluten Free? Dr. Says Not Possible

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Hello All,

I would definitely appreciate some insight and expertise into a skin condition that I have been dealing with lately. First off, I was diagnosed celiac about about 3 months ago (super high TTG and positive biopsy). Immediately my wife and I went gluten free and are extremely strict. I had been sick for about a year previous to my diagnoses and after 3 months gluten-free had just started feeling like something close to my old self again.

I was working out one evening and doing a lot of sweating and suddenly my skin became very, very, itchy. I scratched and scratched to get some relief, over the course of the next couple days I continued to itch and could see these red, flat, dime-sized blotches on my lower stomach, sides, back, and upper thighs. I kept a watch on it for a week or so, with little relief or improvement and continued itching. From the pictures I have seen online of DH it somewhat resembles it but there is no puss, or oozing just red splotches.

I saw the GI Monday, showed him some of the marks on my upper arms and asked him if it was related to Celiacs. He told me that since I have never had any symptom like this before, it is highly unlikely that it is DH because DH would have revealed itself earlier and likely not developed AFTER going gluten-free... He told me that when people have celiac disease they often try to blame any and every problem they have on it and it is likely unrelated to celiac disease (he is kind of a jerk). He told me the only treatment for DH is gluten free diet and I am already doing that. He advised me to get to a dermatologist (45day waiting period).

On a side note, my Aunt (who has celiac disease) said she was told that often times DH can show up after going gluten-free because the antibodies to gluten that used to reside almost exclusively in the intestines are now accumulating more in the skin, as there is no longer the gluten build up in the digestive tract... Has anyone ever heard anything like that? Does it make sense?

Anyway, it has been several weeks now, the spots are not itching nearly as much and there does not appear to be any new one forming. However, the old red splotches don't seem to be going away... I have been putting vasoline on them daily which seems to alleviate the itch.

Any suggestions, insights, or recommendations?

Thanks!

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First, DH might still occur at very low levels of gluten in your diet, even though other celiac GI symptoms were calmed. For many of us it has taken a long time to get every last shred of gluten out of our diets.

Second, as we've been discussing elsewhere, it seems that once the DH process has started, it can take a while to work out of the system, even without any more gluten.

A couple of us have had DH outbreaks in new areas even as old ones were healing. That suggests that once the process has started (undetected) it might be possible for it to continue to develop even though there is no more gluten challenge. Thus you get a breakout weeks after a gluten challenge. This might be the case for you.

As you might have noticed this is a complex disorder and no one seems to have all the answers.

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You can test your theory that it's DH by eliminating iodine temporarily to see if you can get the last of the blotches to go away. For DH to occur, you need both gluten and iodine. For me, the DH is triggered more by iodine than by gluten, and I was able to control it for 15 years by eliminating all iodine while continuing to eat gluten (I didn't know I had celiac--I just knew the rash disappeared when I eliminated iodine). You might try switching to non-iodized salt and eliminating salty snacks (like chips, nuts, and crackers) that might contain iodized salt, seafood, and asparagus. Sometimes dairy products in certain parts of the U.S. contain high amounts of iodine, too, and I've found that drinking/eating organic dairy products seems to cause less exposure to iodine. If the rash fades away, then you have your answer--the rash was probably celiac-related. You can try reintroducing iodine into your diet after a while.

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Yeah, I did! I knew I had breakouts due to iodine, so I'd avoided iodized salt and salty snacks since I was about 20 years old. Then, when I moved to a new area when I was 30, I began to be covered with DH all over my face and neck. I was tortured for four years while dermatologists treated me for severe acne (even though I told them it itched like crazy and became even more painful with acne medications). Finally, I read an article in a newspaper column that said that people with "acneform" caused by iodine should avoid dairy products because they are sometimes high in iodine. It turned out that the dairy products in my area WERE high in iodine, so after I completely gave up dairy, no new lesions developed...and the others faded away, leaving faint purple scars in their wake. At that time, I was completely unaware that I had celiac.

Fast-forward 15 years....and I began to suffer digestive problems and severe nutritional deficiencies. After two years, I was diagnosed with celiac disease and began researching it. Lo and behold, I learned that ingesting iodine and gluten caused DH! Mystery solved! My son developed DH at age 20, too, and I must admit that he cheats sometimes and eats gluten...and he's able to hide this fact from everyone by eliminating all iodine, since then he doesn't break out in DH. He's told me that DH is so much worse than the other celiac symptoms, he's taking no chances--so iodine had to go. He gets DH on his face, neck, right hand, and left foot, so the DH on his hand makes it impossible for him to work (the herpetic pain makes it difficult for him to bend his fingers). Four years ago when my thyroid finally failed, I had to start taking thyroid medication. If I get cc'd with gluten, a couple of DH lesions will rise up on my face, left hand, and right foot (yeah, opposite of my son's!). So, yes, gluten figures in the equation...but for me, it's more about the iodine. Even without gluten, I have permanent dermatitis across my upper back and on my "nether-feathers" because of the iodine in my thyroid medication. I've been told that I'll just have to live with it because I need to take the thyroid med for life.

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For DH to occur, you need both gluten and iodine. For me, the DH is triggered more by iodine than by gluten,

You are an unusual case if just eliminating iodine while still eating gluten was enough to clear up the DH. Most don't need iodine and gluten both for a DH outbreak. The antibodies from gluten is the cause of the DH. Iodine will keep the antibodies active in the skin though.

Most folks after a time gluten and iodine free will be able, and should, add iodine back into their diet. It is important for thyroid function and I am sorry that for you that has brought back the DH. For some just eliminating iodized salt is enough but some folks do go on a low iodine diet and eliminate much more. For me it took about 6 months to a year for the antibodies to leave my skin and for me to go back to iodized salt. For some it might take a longer or shorter time.

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I would love to see more research on this topic. I'd like to know if other people connected the rash to iodine and eliminated only that. If no one else has, then my son and I are the only evidence that this may be the case. Probably everyone else learned first that they had celiac and eliminated gluten. Also, when I say that I eliminated iodine, I mean that I eliminated ALL iodine (except trace amounts found in some foods), which I know was not a healthy thing to do....but I chose to do it because the DH on my face was so hideous, I looked like a burn victim and only went out in public in the middle of the night.

I know that I probably have an actual allergy to iodine. When I had surgery last year, the nurses used Betadine on me even though I'd made them aware of my iodine allergy. I ended up with a horribly itchy red rash all over my body that lasted nearly a month. That triggered an allergic response to everything that was used during that first surgery....so that my subsequent surgery two months later caused me to develop anaphylactic shock and scalded skin syndrome. All of my skin peeled off in sheets a week later.

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I forgot to include this little tidbit... I am MAJORLY IgA Deficient (i.e., < 2)

If I don't have IgA how can I have DH?

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Wow. I would have beat the living crap of those people in the hospital, btw. After I could stand to move...that's AWFUL.

I am sensitive to iodone (sushi gives me a red spot where I usually break out), and I think too much iodone at Thanksgiving sent my antibodies flaring... I'm lucky I can withdraw iodine and snuff out the rash.

I was back on all food except gluten, I had just added sea salt back and then broke out again. However this time it was VERY mild. I think the antibodies are leaving my skin quickly (5 months gluten-free).

I think my grandmother is allergic to iodine. They gave her iodine as a child and she got a rash everywhere. She avoids it.

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Pricklypear,

That's very interesting.....so there's an iodine connection in your family, too.

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Jortyle,

That almost sounds like a rash I had about 25 years ago. I'd actually had at least 1 previous DH outbreak before that I think, but I didn't know it was DH. I went to see a Dr. about it, it was some type of roseasea (sp?) and he looked for what he called a 'primary patch' to confirm the diagnosis. The 'primary patch' was also a round dry itchy spot, but it was larger than the other ones. It was on my side, and the rest of the spots were on my torso and back I think. He said not to scratch them or they'd spread, and they were getting close to my face.

I was told there wasn't much they could do for it and that it would run it's course in a couple of weeks or so, which it did. I put calamine lotion on the spots to help with the itching. I would see if you can find a spot that seems to be larger than the other spots, that might confirm it. And now I'm feeling itchy again thinking about it.

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I would love to see more research on this topic. I'd like to know if other people connected the rash to iodine and eliminated only that. If no one else has, then my son and I are the only evidence that this may be the case. Probably everyone else learned first that they had celiac and eliminated gluten. Also, when I say that I eliminated iodine, I mean that I eliminated ALL iodine (except trace amounts found in some foods), which I know was not a healthy thing to do....but I chose to do it because the DH on my face was so hideous, I looked like a burn victim and only went out in public in the middle of the night.

I know that I probably have an actual allergy to iodine. When I had surgery last year, the nurses used Betadine on me even though I'd made them aware of my iodine allergy. I ended up with a horribly itchy red rash all over my body that lasted nearly a month. That triggered an allergic response to everything that was used during that first surgery....so that my subsequent surgery two months later caused me to develop anaphylactic shock and scalded skin syndrome. All of my skin peeled off in sheets a week later.

What was it about 'I am allergic to iodine' that they didn't understand. Geesh! What a horrible thing to go through. Your lucky you survived that.

I wish just eliminating iodine had been the trick for me. I spent most of my life covered in oozing sores until I was finally diagnosed celiac. Strangely I had an aversion to salt also for most of my life. I had one salt container that went with me for moves to 4 different states over the course of 10 years. It still wasn't empty when my son was 2 and decided to 'make a cake' using all my spices, flour, salt and sugar in the middle of my kitchen floor one morning. One very big and expensive mess. At least I caught him before he thought to try and turn on the gas stove.

My Mom had DH also and her mothers treatment for it, back in the 1920's, was to use a scrub brush on the blisters and then pour salt on them to dry them up. When I would complain about the itching she would threaten to do the same to me.

I also wish there was more research into both DH and Celiac. It annoys me that doctors will diagnose someone with DH as Celiac even with no gut damage but folks that have positive blood work and a negative biopsy are told they aren't Celiac. Makes no sense to me.

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I forgot to include this little tidbit... I am MAJORLY IgA Deficient (i.e., < 2)

If I don't have IgA how can I have DH?

Did they dx your DH by biopsy? If so that's very interesting. I guess it's all in your skin??

Ooops, just reread your OP. Duh.

Have you considered chronic "heat hives"? Celiacs have lots of skin issues.... Hives are not uncommon. Ice packs help me, and others with various skin conditions. I like Vanicream lotion as a moisturizer. I use Vaseline if I have thick scabs, but Vanicream is always the undercoat.

Sad that I have this down to "coats"...,

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What was it about 'I am allergic to iodine' that they didn't understand. Geesh! What a horrible thing to go through. Your lucky you survived that.

I wish just eliminating iodine had been the trick for me. I spent most of my life covered in oozing sores until I was finally diagnosed celiac. Strangely I had an aversion to salt also for most of my life. I had one salt container that went with me for moves to 4 different states over the course of 10 years. It still wasn't empty when my son was 2 and decided to 'make a cake' using all my spices, flour, salt and sugar in the middle of my kitchen floor one morning. One very big and expensive mess. At least I caught him before he thought to try and turn on the gas stove.

My Mom had DH also and her mothers treatment for it, back in the 1920's, was to use a scrub brush on the blisters and then pour salt on them to dry them up. When I would complain about the itching she would threaten to do the same to me.

I also wish there was more research into both DH and Celiac. It annoys me that doctors will diagnose someone with DH as Celiac even with no gut damage but folks that have positive blood work and a negative biopsy are told they aren't Celiac. Makes no sense to me.

I think the damage is assumed in 90% of DH patients. Its just very patchy so for the first time common sense is used and they don't try to find it on endoscopy. I don't know when they came up with that rule...

I'd like to see a new method of dx'ing DH since its difficult and Derms hesitate to even attempt it. I think a lot of it is misdiagnosed.

I also wonder how many iodine-sensitive DH patients are Hashimotos or hypothyroid patients?????

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I wonder rosetapper if your thyroid failed because you had no iodine for so many years? You stated only that it failed but not in what manner.

Gosh, there is so much to talk about here & so many implications.....

And here's a thought... They say if you live within 50 miles of the ocean you don't need iodized salt or any other form of iodine as you actually get it through breathing the air & licking your lips from the salt air. So who of you lives within 50 miles of the salt water? If you think or thought you were eliminating iodine then you weren't completely. Of those of you super sensitive to iodine --- have you ever noticed that when you took a trip to the seaside you had outbreaks?

I wonder where all the dh sufferers who used to post on here are now? I see very few who have been around more than a few years. Ravenwoodglass has been around the longest (since 2004) as far as I have seen I think. What happened to those who were here before us? Did they all get better & just move on with their lives? Or did they give up & are just living with this? Do they have any answers?

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When I visited my parents (who live on the beach) I did not break out. I guess I should say it was no worse...it was a slightly red time????

We swam quite a few times while we were there....

This was 1 1/2 years ago. Didn't go this summer, too busy.

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I forgot to include this little tidbit... I am MAJORLY IgA Deficient (i.e., < 2)

If I don't have IgA how can I have DH?

Hi Jortyle,

Is that from blood test?

Very little is really known about DH so tests that indicate you are IgA Deficient are virtually meaningless when it comes to your skin condition.

There are stats/studies showing plenty of IgA deficient Celiacs also.

http://www.ncbi.nlm.nih.gov/pubmed/16631941

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No medical proof of this, but I'd tend more to agree with your doctor -- if you didn't have DH before and you've been strict for 3 months, it's unlikely this is DH. Maybe psoriasis?

BTW, my father's DH came and went over the years even while he was still eating gluten (and iodine). Mine disappeared almost immediately when I quit gluten (but never avoided iodine).

richard

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BTW, my father's DH came and went over the years even while he was still eating gluten (and iodine). Mine disappeared almost immediately when I quit gluten (but never avoided iodine).

richard

Mine changed in intensity over my lifetime also. At times I had only a couple lesions, at times I would be covered in them.

I also saw great relief as soon as I went gluten free. It took time for the active lesions to heal but I stopped getting new ones within a couple weeks. However even a tiny bit of CC would cause an outbreak within minutes of injestion. I didn't drop iodine until a few months after going gluten free and once I did the outbreaks from CC became my last symptom to appear after a glutening instead of the first. Now I am back to consuming iodine with no problems and CC will only cause maybe one or two blisters that are very tiny and heal quickly.

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i didnt get my 1st patch of DH untill 2 weeks after i went 100% Gluten free over a year ago... at age 37. it lasted for 4 months then finally cleared up... this whole time i was gluten free. doctors dont know everything obviously. they're even more clueless when it comes to Thyroid Disease :angry:

about 6 or 7 months after going gluten free- i suspected an accidental glutening at PF Changs-> a week after suspected incident- my stomach (original site of DH)- started itching like mad- the red bumps came back- but not the blisters- it only itched for a few days and not months luckily.... i was pissed- and knew i was right about the glutening.

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Squirmingitch,

In answer to your question, I developed Hashimoto's after I finished my chemo treatments for breast cancer in late 2007. I also thought that avoiding iodine for so many years might have caused it to fail, but, as you know, Hashimoto's is an auto-immune disease prevalent in celiacs. I'd like to blame the chemo, too, but my doctors have told me that it had nothing to do with my developing Hashimoto's.

Very interesting information on iodized salt in the air. I live in the San Francisco Bay Area, and my complexion is always messed up....until I travel elsewhere. Then it clears up and looks perfect! Perhaps my skin is reacting to the iodine in the air (??). I've always assumed that I'm simply reacting to the refineries and chemical companies in the area. Thanks for the info!

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Hmmmm... I wish I could give you my experience for although I have lived in coastal Florida all my life I've never had any complexion problems out of the norm. EXCEPT when my first major flare of dh happened the day we arrived from moving inland a min. of 65 mi. from the coast. My thinking is that if your complexion problems are not any or ALL from air pollution then perhaps they are caused (at least in part)from an excess of iodine. Perhaps you should severely limit the iodine in your diet & see what happens.

I'm so new at all this & it seems like the deeper one digs the deeper one HAS to dig! Groan.

Hooray for you bring a breast cancer survivor!

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Unfortunately, I can't severely limit my iodine because of the thyroid meds. :(

And thanks for the kind words....but it may be too soon to celebrate. I had four invasive tumors removed in the past year--the last only five weeks ago. Hopefully, I've beaten it this time....but I'm feeling weary. I was cancerfree for four years, and then out of the blue, it came back. And the chemo I should be taking is not friendly to celiacs (causes severe diarrhea), so I refused to take it.

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Unfortunately, I can't severely limit my iodine because of the thyroid meds. :(

And thanks for the kind words....but it may be too soon to celebrate. I had four invasive tumors removed in the past year--the last only five weeks ago. Hopefully, I've beaten it this time....but I'm feeling weary. I was cancerfree for four years, and then out of the blue, it came back. And the chemo I should be taking is not friendly to celiacs (causes severe diarrhea), so I refused to take it.

I'm very sorry to hear that, rosetapper.

Could you please explain what thyroid med you are on?

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Me too rosetapper. Every particle of positive energy I have is coming your way.

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