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Is Dh Related To More Than Gluten Sensitivity?

ellen123

By ellen123
in Dermatitis Herpetiformis

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ellen123 Apprentice
ellen123
Posted

Hey out there,

I've read a lot on this forum about DH and gluten but I'm hoping someone knows the answer to this without my having to go hunting through the threads and articles. Is DH also a symptom of other food sensitivities (like casein, soy, nightshades, etc.)? Also, is there one really good article I can read that'll give me a better understanding of DH? I've seen various people's comments and advice about how to cope with it and I've read some explanations about why so many of us keep getting outreaks (such as that it takes up to 2 years for the IgA antibodies to leave the body, or the skin), but I would love to know the source of that information. I'm also wondering whether there's anything else going on, some other food sensitivy that may be slowing my progress. Since I don't suffer from any overt GI symptoms that so many others here have (mine are mainly neurological-pain related, plus the DH), I haven't been strongly motivated to give up anything other than gluten at this point. (I realize I must have some level of GI damage -- I'm just lucky enough not to have those symptoms.) But I continue to wonder whether maybe I need to try eliminating other things, or whether I should just sit tight and keep trying to improve my game being gluten-free, since overall I'm doing much better, despite minor setbacks each week.

By the way, I think I know why my DH has flared up so badly this week. Last night (as I was scratching) I was reading on the DH forum about how iodine seems to exacerbate DH symptoms, and I was so happy with myself for knowing enough not to use iodized salt in the house. I even confirmed that the big container of salt in my cabinet says it's not iodized. Then today while I was cooking, I casually picked up the salt container next the the stove that I've been using all month, every day -- this sea salt that my husband had been using while he was in France -- and realized the label said "Iode" (iodized)! What a jerk I am! So that explains this week's foolishness. But I'm still wondering whether other things may be causing it too. I'd appreciate any advice.

Ellen

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dhd2000 Newbie
dhd2000
Posted

I would bet it's the iodine that's been bothering you. I am pretty sensitive to that as well. And if you are still using advil or ibuprofin, giving that up can help quite a bit. I do think other things can cause dh outbreaks, maybe not forever, but at least while you're still healing. I gave up maltodextrin, (which I think is a powdered corn product) and high fructose corn syrup and that helped as well. I think maybe anything that is hard on your stomach, or hard to digest, like corn, can cause the flare-ups for awhile. It's hard to keep cutting things out of your diet, I know!

I've used this site for good DH info: Open Original Shared Link

Dee

Hey out there,

I've read a lot on this forum about DH and gluten but I'm hoping someone knows the answer to this without my having to go hunting through the threads and articles. Is DH also a symptom of other food sensitivities (like casein, soy, nightshades, etc.)? Also, is there one really good article I can read that'll give me a better understanding of DH? I've seen various people's comments and advice about how to cope with it and I've read some explanations about why so many of us keep getting outreaks (such as that it takes up to 2 years for the IgA antibodies to leave the body, or the skin), but I would love to know the source of that information. I'm also wondering whether there's anything else going on, some other food sensitivy that may be slowing my progress. Since I don't suffer from any overt GI symptoms that so many others here have (mine are mainly neurological-pain related, plus the DH), I haven't been strongly motivated to give up anything other than gluten at this point. (I realize I must have some level of GI damage -- I'm just lucky enough not to have those symptoms.) But I continue to wonder whether maybe I need to try eliminating other things, or whether I should just sit tight and keep trying to improve my game being gluten-free, since overall I'm doing much better, despite minor setbacks each week.

By the way, I think I know why my DH has flared up so badly this week. Last night (as I was scratching) I was reading on the DH forum about how iodine seems to exacerbate DH symptoms, and I was so happy with myself for knowing enough not to use iodized salt in the house. I even confirmed that the big container of salt in my cabinet says it's not iodized. Then today while I was cooking, I casually picked up the salt container next the the stove that I've been using all month, every day -- this sea salt that my husband had been using while he was in France -- and realized the label said "Iode" (iodized)! What a jerk I am! So that explains this week's foolishness. But I'm still wondering whether other things may be causing it too. I'd appreciate any advice.

Ellen

ellen123 Apprentice
ellen123
Posted
  • Author
And if you are still using advil or ibuprofin, giving that up can help quite a bit.

Dee

Thanks, Dee. I'll definitely switch from ibuprofen to something else, because I have taken it (Advil, in fact) at least 2 or 3 times in the past month for neckaches-headaches. So maybe that's increased the itching, as well as the iodine. Thanks also for the link; I'll check out the article.

Ellen

RoseTapper Newbie
RoseTapper
Posted

I vote for the iodine! While gluten must be present to have a DH attack, iodine serves as the "trigger." This information can be found in Dr. Peter Green's book, "Celiac Disease: The Hidden Epidemic." If you want an excellent resource on celiac disease and gluten sensitivity, this book is outstanding. Dr. Green discusses DH, as well, and I would highly recommend this book for anyone with celiac and DH.

Alona Newbie
Alona
Posted

Not disagreeing with the iodine part, but I've also read that some poor patients also have to eliminate dairy for full results. I hope that's not the case, as dairy is one of my favorite foods, as I'm sure it is for many others. *Thinks about sour cream on tacos and gets hungry*

lovegrov Collaborator
lovegrov
Posted

Gluten and iodine are the only dietary items I've ever heard of that can trigger DH. And the iodine shouldn't be a problem after you clear your body of the Iga deposits. I don't worry about iodine and I haven't had a DH attack in years.

richard

dadoffiveboys Rookie
dadoffiveboys
Posted
Gluten and iodine are the only dietary items I've ever heard of that can trigger DH. And the iodine shouldn't be a problem after you clear your body of the Iga deposits. I don't worry about iodine and I haven't had a DH attack in years.

richard

My DH is also triggered by Casein. Although I'm not sure if this is a 'cross-reaction' and mimicry so it's really Gluten but my body confuses it. Since I am gluten-free/CF though I am completely DH free. I did a test recently to confirm I can't have any dairy at all (NOT DOING THAT AGAIN) where I tried a 4oz yogurt. It made me sick for a week (or so) and I had 5 DH bumps. Not so sick I couldn't do anything but sick enough to never try that again. I can't even handle cross-contamination from gluten without getting a DH bump. If a product is 'legally gluten-free' by some definitions companies use (<20ppm) I STILL can't have it w/o bumps.

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  • 2 weeks later...
Austin C Newbie
Austin C
Posted

I am a parent of a 4 year old with DH. We have known of this for only 5 months. Does anyone know about how long after gluten is eaten that you will recognize DH bumps? My son is in pre-school and I pack his own lunch's and snacks, but I cannot watch him or prevent his eating something with gluten in it all the time. I know that we do not give him anything with gluten in it, so I was wondering if I would be able to track the person or persons that might not be watching what they are giving him and be able to help them to know the right things.

psipsina Rookie
psipsina
Posted
I would bet it's the iodine that's been bothering you. I am pretty sensitive to that as well. And if you are still using advil or ibuprofin, giving that up can help quite a bit. I do think other things can cause dh outbreaks, maybe not forever, but at least while you're still healing. I gave up maltodextrin, (which I think is a powdered corn product) and high fructose corn syrup and that helped as well. I think maybe anything that is hard on your stomach, or hard to digest, like corn, can cause the flare-ups for awhile. It's hard to keep cutting things out of your diet, I know!

I've used this site for good DH info: Open Original Shared Link

Dee

Would you mind elaborating on why no advil or ibuprofen? I'm pretty sure I have DH though I haven't had a skin biopsy. I got glutened by accident (just figured out that it was the reeses eggs I had during easter) and had a MRI with iodine contrast in the same week and got itchy red raised bumps all over my legs focused around pressure points. I have never had this reaction to being glutened so I think it was the combo of iodine+gluten that really caused it. I already don't use iodized table salt but want to make sure I avoid anything that might flare this back up as it was miserable! Thanks.

solange Newbie
solange
Posted

I had to give up dairy to get rid of DH, and there is a miracle recipe to get DH back: three days after eating dairy, it is back like a charm. A friend of mine who isn't gluten intolerant claims the same thing happens to her.

nora-n Rookie
nora-n
Posted

About how long it takes before the bumps show up, I read this can be any time from very soon to a few weeks, making tracking down glutening/ iodine really difficult and confusing.

Also, I keep reading ibuprofen (NSAIDS) are not good when one has celiac or DH or neuro symptoms from gluten or IBD.

I can feel my gut gets leaky from NSAIDS or glutening. taking potassium somewhat makes it better, I guess it is just replacing some potassium I lose. Otherwise I crawl on the skin and have to kick the wall as my feet crawl and feel like spasms.

I cannot have milk or traces of milk either.

nora

dhd2000 Newbie
dhd2000
Posted
Would you mind elaborating on why no advil or ibuprofen? I'm pretty sure I have DH though I haven't had a skin biopsy. I got glutened by accident (just figured out that it was the reeses eggs I had during easter) and had a MRI with iodine contrast in the same week and got itchy red raised bumps all over my legs focused around pressure points. I have never had this reaction to being glutened so I think it was the combo of iodine+gluten that really caused it. I already don't use iodized table salt but want to make sure I avoid anything that might flare this back up as it was miserable! Thanks.

I know from personal experience that advil can cause DH outbreaks on me. It seems like it's related to inflammation somehow. Read this: Open Original Shared Link

That site has tons of good DH info in the Ask the experts section.

ellen123 Apprentice
ellen123
Posted
  • Author

I tried a good homeopathic alternative to ibuprofen: an anti-inflammatory remedy called Traumeel. It's recommended for muscular pain, sports injuries, bruising, stuff like that. It actually seemed to help a lot when I pulled a muscle in my back. I don't know if would help for headaches, though, which is the other reason I used to take ibuprofen fairly frequently.

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