Activated Dh Lesions

[eatmeat4good]

I have DH on my face. This is my fourth month gluten free. I have been avoiding iodine and all fish and the sores were almost all healed. I really don't miss the salt. I really do miss the fish. So today, I ate crawfish tails reasoning that they weren't an ocean fish so it might be ok? Wrong. Within 2 hours I have the pain and swelling in all the sores and they are all activated. Darn. I have read that it takes both iodine and gluten to activate the sores. The problem is, I only ate the one cup of crawfish tails, plain, heated in the micowave. And water.

My questions are-

1. How long do I have to avoid iodine? Like 6 months to a year? I guess everyone may be different?

2. Is there ANY kind of fish that doesn't have iodine? I like fish and really miss it. All fish is out until the sores heal then?

3. Why oh why did I test it? I hate this severe pain...my sores are on fire. The pain relieving ointment only works for a little while.

4. Is it possible that I might never be able to eat fish?

5. Could I be allergic to fish? or Iodine? However, the only symptom I have is the activated lesions.

Any opinions will help, I know there are a few who have been dealing with this longer than I have and have more experience.

I have had DH for 7 years. I understand the antibodies stay in the skin a long time. I hope I am not back to square one due to this fish challenge.

[emaegf]

I eat fish on occasion without my DH acting up. It's the shellfish that you have to avoid the most.

I found this on avoiding iodine "It is not necessary for dermatitis herpetiformis patients to eliminate iodine completely from their diet, merely to avoid foods high in iodine as described above. Dr. Zone also explained that dermatitis herpetiformis patients need not avoid iodine indefinitely. Iodine is an important mineral for our bodies. dermatitis herpetiformis patients can stop avoiding iodine when their rash symptoms clear up which can take anywhere from a few months to a couple of years on a gluten-free diet." It was here https://www.celiac.com/articles/177/1/The-Gluten-Intolerance-Group-of-North-America-on-Iodine-and-Dermatitis-Herpetiformis/Page1.html

You don't have to avoid all salt just iodized there are uniodized salts I use kosher salt for cooking and such. You use less and it has a cleaner taste than table salt.

For the active sores cold helps to lessen the pain and itch also you can try sprays like Bactine they work better than the cream.

no you're not back to square one.

[eatmeat4good]

Thank you very much.

I have been confused about fish. I guess I won't try shellfish, I will try other fish next challenge.

I was scared to use salt at all, but did buy some sea salt, albeit while I was at the fish store buying my shelfish!

I so want the sores to be gone.

Thank you for your help and for the link.

How long do your reactions last when you have activated your DH. Has it happened to you?

[eatmeat4good]

Oh my gosh.

I just read that article.

It says do not use sea salt, use uniodized table salt.

So thank you again.

[itchy]

I wonder if avoiding iodine isn't a risky approach to solving your problem.

I don't think it is adviseable to eliminate iodine from one's diet completely; that's why we have iodized salt in NA, to eliminate certain thyroid problems and goiters, etc. Especially if you live inland.

The real problem is the gluten. Because eliminating iodine makes the DH problem go away, it masks the fact that you may still be getting too much gluten. (Help me someone, does iodine avoidance help your GI symptoms as well?)

[mushroom]

The avoidance of iodine is normally a temporary thing, just to get the DH to heal faster. It will eventually heal in the absence of gluten but heals faster without iodine kicking it into a higher gear. It is not a permanent thing, just to relieve the suffering.

[itchy]

But if you keep the lesions in check by limiting iodine, you may be masking the fact that you are still getting gluten. It may be masking damage being done to your GI system.

I would say that if someone gets DH symptoms after putting iodine back in their diet, they should be addressing the gluten issue, not the iodine issue primarily.

Am I making sense?

[Hopeful1950]

Gluten creates the antibodies that end up in your skin just waiting to blister. The iodine in salt and shellfish etc. can activate those antibodies and cause a flare. It takes awhile after eliminating gluten from the diet for the antibodies to clear, but once they have cleared from your skin, then iodine should be no problem. Do be careful about first aid ointments. I made a huge mistake and accidentally used an ointment on some lesions and found out the hard way that it contained some iodine. Ouch! Also be sure to check ingested medications. My DH became acute about 7 years ago when I was taking a weekly dose of the osteoporosis medication, Actonel, which is full of iodine. I have also had a reaction after eating asparagus which has iodine.

I am also worried about the possible effects on my thyroid because lack of iodine can cause problems and ironically thyroid medications almost always contain iodine.

Dealing with this rash is one of the hardest things I've ever had to do!

[Hopeful1950]

But if you keep the lesions in check by limiting iodine, you may be masking the fact that you are still getting gluten. It may be masking damage being done to your GI system.

I would say that if someone gets DH symptoms after putting iodine back in their diet, they should be addressing the gluten issue, not the iodine issue primarily.

Am I making sense?

[Hopeful1950]

Oops messed up.

Even if you aren't consuming any gluten, the antibodies can remain in your skin for years and just lie in wait to be activated by the iodine. So, even if you aren't consuming gluten, you could react to iodine.

[eatmeat4good]

That is what I am finding out.

I am very strict about gluten, so I don't think it's gluten.

Only vegetables and meat each meal, without spices and no restaurants.

No grains.

I had a huge reaction to the shellfish.

If the antibodies stay for years, then that means shellfish is out. (and asparagus-thank you I didn't know that)

I should have my thyroid checked, but to be honest, with how much pain these sores cause, I doubt I could/would take medication that would cause flares.

Thank you all for your replies, this has been very confusing and difficult.

The pain is subsiding and they seem to be healing again.