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TriciaW

How Long After Exposure Do Lesions Appear

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hello!

My son was diagnosed with DH several months ago and we have been on a gluten free diet since. However, he still has occasional breakouts from "hidden gluten". (I can't seem to find the source of it). Can anyone tell me how long after ingesting gluten the dh lesions appear? A timeline would be helpful in figuring out where he is ingesting the hidden gluten.

And how long do they last? Our doctor does not want to give him the Dapsone since he is only 8. When he does break out, they last up to 6-8 weeks!!! But, I suspect they may heal sooner if he would leave them alone. He keeps picking at the scabs and won't let them heal.

Any feedback would be helpful.

P.S. I have suspected that "whole wheat" bothered me since before I even knew what celiac disease and DH was. Now, I am going mostly gluten-free and my acne is nearly gone and I have virtually no bloating, headaches or gas. Amazing!

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Sorry. I don't know but check out this thread. Maybe it would help him not itch and then not scratch.

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There's a chance he may be sensitive to iodone. If he is, high iodone foods will trigger the iga antibodies in his skin and he'll break out.

For a list if high iodone foods, google "thyca".

The iodone sensitivity should reduce as iga antibodies reduce. Some are more sensitive than others.

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Yes, I agree--iodine may be playing a part in your son's continued breakouts. Absolutely remove any iodized salt from your home and be careful to feed him only foods that are low in iodine. As for my DH, it also lasts 6-8 weeks...and sometimes even 12 weeks. I don't know if scratching would cause it to last longer. For me, it was the constant peeling that seemed to keep the lesions active. I've been on a strict gluten-free diet for nearly eight years, and it took a good 2-3 years before I got a handle on the DH.

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Another thing, keep the sores moisturized. I use Vanicream 3x a day with Vaseline on top when the sores are dry and healing.

As far as how long it takes to break out, I don't know. Everyone is different. A good iodine dosing gets me in 12 hours. I don't react very much (that I know of) to ingested gluten - I don't get stomach aches, etc. It's hard to know if it's gluten or something else for me, since I'm just now hitting the 6 month gluten-free mark. I've never knowingly ingested gluten since going gluten-free.

I may get flu-like symptoms, not sure yet (that was about 12 hours later). I've yet to see a correlation between a 1x gluten ingestion and a DH outbreak - but that's because I don't really know when I get in it. Iodine is easy to identify, though.

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You've asked the million dollar question.

I think we'd all like to be able to trace back with certainty to what food we ate that caused the lesions. I don't think there is likely to be a cut and dried answer though, due to the interplay of gluten, iodine, and one's own immune response system.

There really needs to be research on this. I encourage you to write to your national celiac association, explaining why this research would be helpful. If enough people write maybe someone will eventually fund this kind of practical study.

I don't think picking affects healing much. Lesions don't seem to become infected. But lesions often burn intensely and picking provides relief. The best way to reduce picking is to keep the lesions moist with some kind of antiseptic cream, in my experience. And 'bandaids' if they are practical.

Finally, as my lesions are finally healing, I'm finding that what seems to cause unexpected glutening are manufactured products with various sugars in them. Industrial sugars from a wheat source will likely have gluten in them, while others will not. It is often difficult to detect from labels what the source of the sugar is, so all sugar containing products are suspect.

At least that is the theory of the moment.

Best wishes.

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Check also any spices you may be using to season foods with. I had a break out on my fingers from cajun salt, not on my food but in the water crab legs were boiled in and then I was touching the legs.

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Right, AVR.

And we pitched all the curry powder because that seemed to be causing a reaction.

I'm sure it had unstated contaminants in it.

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The only reaction I was ever sure about was the the lunch I had this summer at a Thai restaurant. By the time I walked home my arm was on fire and blisters started to form, so maybe only about one hour.

My household is not gluten free, so I suspect I am frequently getting cc. This make it nearly impossible to gauge any true reaction between what I think I've eaten and how my skin reacts.

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Unfortunately, no one can actually tell you how long after exposure your son's lesions appear. Just like with how long it takes to get better and how long internal smptoms appear or how long they last, it depends on the individual.

richard

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First -- let me say -- THANK YOU -- to all of you who responded to my query.

I have read about the iodine link, but I am so nervous about eliminating it because it is so critical to healthy thyroid functioning. And -- he is just eight, so I think it is hard for him to vocalize any internal changes he may experience due to change in his thyroid function-- anyone out there have similar concerns? So, do I just eliminate iodize salt? What else?

I feel so overwhelmed. I can eliminate the obvious gluten, easily enough, but all of the hidden sources -- ugh! He eats the lunches at school about 50% of the time and they are being so good about trying to accomodate his needs, but I can't help but think that the mostly processed foods (althought they appear to be gluten free)that they are serving are contributing to the problem.

Also, we are in a rural area and don't have access to a knowledgeable doctor or dietician. And every time I ask about getting referred to one that good with Celiac/DH, I get info regarding a GI doctor. Since Zach (my son) isn't really affected too much with GI symptoms, I really need more knowledge about how to manage the DH symptoms.

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You can learn more about a low iodine diet by googling "thyca". It's a website with info for people about to undergo thyroid irradiation, and they must limit iodine.

In the grand scheme of things, pulling down iodine levels for a few weeks is not a big deal. if you're nervous, consult a pediatrician.

I would be equally concerned about the mental effects and physical effects of the rash, if not more so since I've been there. It is intensely painful and itchy for most. It can make you feel ostracized and sick.

Also, if he's on any vitamins check them for iodone. That got me once.

If he is iodone responsive his rash should start to heal up within a week or so, or you should see fewer new sores. Then, try adding back bits of high iodine foods. My biggest offenders are egg yolks and carageenan (you find carageenan in commercial ice creams, etc.).

Also, if he's getting glutened at school you must insist on stricter measures, and teach him how to avoid it. it is very difficult and overwhelming, I know. Just keep working at it and y'all will figure it out.

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I feel so overwhelmed.

Your feelings are completely understandable. Don't be too hard on yourself. Your son is incredibly lucky to have you to advocate for his health.

You really need to get your head around the fact that this is a life time issue for you and your family. The sooner you see it as a long term / lifestyle change the easier it will be for you to deal with today, tomorrow, then next week, next month.

Do what you can do today and think about tomorrow tomorrow. If you do one good thing for him today then you've done well!!

And make sure you keep us uptodate with how you are both progressing!

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Hi Tricia

I strongly agree with your concern about the prepared foods at school being very risky. You have to have a lot of trust in someone to allow them to prepare your food, because it takes a lot of time and experience to reach a truely gluten free diet. Well meaning people are often the source of accidental glutenings.

We've all developed our own strategies for coping with this condition.

One of my strategies is to minimise food prepared outside the house, and manufactured food that isn't explicitly labelled gluten free. And I try to avoid trying to substitute new food to replace the old diet, although that has its limits. That means you don't have to feel you need to buy gluten free bread at $8 a loaf just to replace the bread in sandwiches. I replace the idea of sandwiches rather than the bread.

When I'm going out, I eat something before I leave, so I won't be tempted by something because I'm hungry.

By simplifying the diet, you can minimise that overwhelmed feeling.

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I don't let the school try and feed my boys at all. Top much chance of cross contamination. I pack a lunch for them every day. This might be a good place to start to look for gluten cc.

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I don't let the school try and feed my boys at all. Top much chance of cross contamination. I pack a lunch for them every day. This might be a good place to start to look for gluten cc.

Yes! I think that is what we are going to try and do starting with the New Year. Since being home this week, he hasn't had any new outbreaks and the sores are healing up.

However, last night after eating some Werther's Original Sugar Free candy that he received at Christmas... he was bloated and gassy. I was racking my brain to figure out what he had eaten that was bothering him. (Although since he is an 8 year old boy... he doesn't seem to find passing gas bothersome at all, but instead rather cool... lol) I looked at the ingredients label and saw it contained "isomalt". After some quick internet research... I see that it is gluten free, but celiacs tend to be really bothered by it as well as others. So, another new food ingredient to watch for! ugh!

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There are a number of "gluten free" ingredients that effect me which are of gluten product origin (such as xanthan gum etc etc). You might need to be like me and others and research online ingredients in detail. If it says grain/starch (not necessarily but "might" be wheat/barley etc involved in manufacturer) then it is best to avoid.

Most of the research, manufacturing, producers webpages will class it as gluten free as per regulations however I like others seem to be sensitive enough to react.

This takes "label reading" to a different level but it will be worth your, and your childs, effort.

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