Dh - Timeframe Between Ingesting Gluten And Dh Lesions Appear

[jammom123]

I was diagnosed with Celiac in September '10 as a result of a diagnosis of Dermatitis Herpetiformis. Have been on strict gluten-free diet since then, (but still learning)....does anyone know how long it takes from the time you ingest gluten for new DH lesions to appear? I go along great with clear skin then I will get a few lesions, it would help to know how long it takes for the DH "sores" to be "activated" so I could determine what I ate that contained gluten. My dermatologist didn't know....

[itchy]

I hesitate to jump in here before more 'experienced' people write in.

I understand your dilemma entirely. As someone who takes extreme precautions but keeps getting lesions, I've wondered how to work back to identify 'mistakes'.

I'm starting to get the impression that it might be 12 to 18 hours, since that seems to be how long it takes on those occasions when I'm convinced I've eaten hidden gluten.

But with me, lesions reappear or begin stinging at times I can't associate with any risky food.

So I suspect there are other factors at play that relate to our immune systems. I've even identified a 7-10 day cycle of remission/exacerbation that doesn't seem to relate to anything at all.

After reading lots of past posts, I've concluded there is a lot of individual variability.

[Hopeful1950]

Couple of thoughts:

1) Even though you have been gluten free since September, the antibodies in your skin (that were formed when you were eating gluten) may take up to two years (sometimes as long as 10 years!) to clear out. Therefore, they can activate even without gluten ingestion.

2) Some of the things that can activate the antibodies are: iodine (in salt, food, vitamins, medicine)and trauma to the skin (cuts, bruises, rubbing clothing).

In my experience it doesn't take very long after getting into iodine for my lesions to blister...usually overnight. I have had a harder time linking gluten exposure since I'm not always sure if I have gotten gluten because I am very strict about my diet. I have been forced to trust restaurants when travelling and in every case have flared up, but still don't know whether it was gluten or iodine or both.

Try not to get discouraged. Sometimes there is no clear link to what causes this rash to flare up, it seems to have a life of its own! My experience with dermatologists is that they don't know that much about it. You were lucky to even get diagnosed.

Identify any sources of iodine in your diet and eliminate them. It is in shellfish, table salt, sea salt, vitamins, thyroid medications. Some antiseptic ointments contain it.

Good luck.

[rosetapper23]

This question has been asked many times before, and the time from gluten exposure to DH symptoms seems to vary. Personally, I broke out within 30 minutes during the first three years after I went gluten free, but nowadays it can take a few hours or even overnight. I do know that the longer I go gluten free, the longer it takes to break out when I'm accidentally glutened. Because I'm so careful, I get glutened perhaps once every year or two.

[georgie]

I have been strictly gluten-free for 4 years but after a restaurant meal last week I broke out in 36 hours. I am not confirmed as DH but highly suspected.

[jammom123]

Thank you for all the replies....I will check into the vitamins I'm taking - One A Day Women's - also someone mentioned avoiding asparagus???? Please fill me in... thanks!

[mushroom]

I have heard that asparagus has a high iodine content.

[jammom123]

I have heard that asparagus has a high iodine content.

Ok, so if iodine causes flare ups in terms of new sores on my skin, is it also further damaging the small intestine as with the ingestion of gluten? Or is iodine something I need to avoid until the I detox from the DH? Also, is it possible to have a DH break out any other place other than our "external skin"...i.e. my tongue??

[Hopeful1950]

It is my understanding that the iodine causes existing antibodies (that have been previously caused by gluten)to flare into sores so it shouldn't cause further damage to the gut. The bodie's reaction to gluten in the gut is what causes the damage. I think I recall reading that sores in the mouth are not as common, but some people do get them.

[eatmeat4good]

Yes, your tongue can develop sores.

I finally realized I had DH after the skin on my tongue sloughed off. Sounds awful but it wasn't painful. I also got sores on the corners of my mouth whereas before they were always on my face and dermatologists treated it as adult acne. Which I knew it wasn't. The last major outbreak gave me sores in all the classic places. One elbow, lower back, face, mouth, tongue, forehead, wrist all at the same time.

That night I googled and found Celiac. Recovering for 4 months and I still get flares from any tiny little bit of salt or gluten. My reaction starts withing an hour with swelling, then oozing, and pain. 3 days to start healing again.

Avoid shellfish. I had a huge reaction to it. And that iodine thing is very serious. Even a dab as in salted food in a restaurant will cause me to break out.

Outback has gluten free food, but I was getting sores every time I ate there, and thinking it was gluten and they must not be very careful. Turns out it was the salt on the outside of the baked potato. I washed it off, but there was enough to cause a breakout.

Sad and very true that DH is supersensitive to iodine and gluten. Either one will cause a reaction for years. I can't quite believe it yet. I thought gluten was bad enough, but the iodine is actually worse for me now.

Vitamins, fish, shellfish, medications, asparagus...I wonder if there are any other vergetables with iodine? Anyway, these are the things that have caused a reaction for me.

[jammom123]

Yes, your tongue can develop sores.

I finally realized I had DH after the skin on my tongue sloughed off. Sounds awful but it wasn't painful. I also got sores on the corners of my mouth whereas before they were always on my face and dermatologists treated it as adult acne. Which I knew it wasn't. The last major outbreak gave me sores in all the classic places. One elbow, lower back, face, mouth, tongue, forehead, wrist all at the same time.

That night I googled and found Celiac. Recovering for 4 months and I still get flares from any tiny little bit of salt or gluten. My reaction starts withing an hour with swelling, then oozing, and pain. 3 days to start healing again.

Avoid shellfish. I had a huge reaction to it. And that iodine thing is very serious. Even a dab as in salted food in a restaurant will cause me to break out.

Outback has gluten free food, but I was getting sores every time I ate there, and thinking it was gluten and they must not be very careful. Turns out it was the salt on the outside of the baked potato. I washed it off, but there was enough to cause a breakout.

Sad and very true that DH is supersensitive to iodine and gluten. Either one will cause a reaction for years. I can't quite believe it yet. I thought gluten was bad enough, but the iodine is actually worse for me now.

Vitamins, fish, shellfish, medications, asparagus...I wonder if there are any other vergetables with iodine? Anyway, these are the things that have caused a reaction for me.

eatgoodmeat4good - Thanks for the detailed information, gosh, just when I think I sort of have my arms around this thing, I open another "pandora's box" of other potential complications and information. The vitamins and asparagus thing really surprised me.

[eatmeat4good]

You are very welcome.

They surprised me too.

I'm just getting the last of my sores healed.

And fearing the next Pandora's box I will discover.

This will be my first time in 7 years without sores

if they actually really do heal.

I love shrimp and crab and those are awful. Just awful on the sores.

My pharmacist recommended a vitamin that was just vitamins...without minerals.

I take the minerals separately to avoid the iodine.

You can use uniodized table salt...it is sold next to the iodized salt.

So far, I'm scared to try it...but I bought some.

good luck

[eatmeat4good]

oops-

I want to clarify my previous post when I said either one will cause a reaction for years. I meant the antibodies stay in your skin for years, not that a reaction will last for years. Hope I didn't confuse you.

Most people seem to clear up in a matter of months from all the reading I have done here.