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How Long Until You Stopped Breaking Out?


frenchiemama

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frenchiemama Collaborator

I have been gluten-free since April 21 with about 3 accidental glutenings. My skin has been really clear fo the last couple weeks since I learned to cut down iodine and stay out of the sun. Really clear, as in almost gone. Last week on Sunday I got contaminated food at a restaurant, and within about 2 days I started to break out and it just keeps getting worse. It's so bad today that I had to break out the prednisone and it's been over a week.

My question is do you break out this badly from a gluten accident? Or am I just still having random breakouts? How long did it take to be really clear?


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lovegrov Collaborator

DH can take months and months to completely clear. Small mistakes can cause it to flare almost as bad as before you went gluten-free.

Are you certain this is DH? I've never heard of prednisone for DH, just dapsone.

richard

frenchiemama Collaborator

I can't take dapsone, so my doc gave me some prednisone for the worst of the worst flare ups. It's actually written in the prednisone prescribers information that it is appropriate for DH. I only take it for about 5 days to get things under control.

cdford Contributor

It takes a long time for the breakouts to completely clear. Every time I get accidentally glutened, I just expect it to last for months off and on. It does finally clear.

frenchiemama Collaborator

Argh. Months you say? That blows. I was really liking my nice, clear, non-itchy skin. Oh well. That really makes me not want to eat out.

oakpoint9 Newbie

I have been gluten-free since March, I have had 3 accidental break outs. Each one is worse than the other. Both arms, legs, my chest. back of the nack and my hands are effected. I think that a small amount of gluten effects my skin more than when I was eating gulten and unaware of what was happening.

My out breaks last up to a week, but the painful itch subsides after 3-4 days.

Emotionally, I am a basket case, I fear eating out, being the customer from hell because others do not understand what contaimination can do to me.

I am luckly to live in a large town with Whole Foods, a gluten free bakery, and a large product selection.

Dapsone, benedryl, cortizone cream and cetaphil cream are my friends, if any one has other products that work for them, please let me know.

I spend 2 days fishing in the gulf, 3 days after a break out. I stayed out of the sun, but the heat intensified the rash. I brought my food with me.

My new forced life style is difficult, but TIME is a great healer and I pray that each day brings me new knowledge.

Thanks for listening!!!

Carriefaith Enthusiast
My question is do you break out this badly from a gluten accident? Or am I just still having random breakouts? How long did it take to be really clear?
I broke out in dh after what I believe was a gluten contamination. I mean I didn't delibrately eat gluten, but I got all the symptoms and started breaking out in dh so it had to be gluten. It got really bad one day and then was almost gone the next day. The bigger spots stayed longer, maybe for a few more days. So yes, I think a gluten accident can trigger dh.

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cdford Contributor

You may not take as long as I since some of these others are giving much shorter times. I had been sick for a long time before being diagnosed and may be much more sensitive than most. Hopefully your body's response will be much better.

frenchiemama Collaborator

Ah-HA! Mystery solved.

Here's the story:

Last week we ate at a local restaurant that we have eaten at several times before and never had a problems. When I got my food, I *thought* I saw a teeny little breadcrumb in with my meat. I poked at it, husband poked at it and he proclaimed that it was not bread but part of the meat. So I foolishly ate it.

That night at work I didn't feel well, no D or anything, but I had to go several times, I was nauseated, had gas (good thing I'n outside by myself most of the night :P ), a little dizzy. I wasn't sure that I had been glutened because no D, and that is usually present. Then the next day I started breaking out really badly. I suspected that there had been a breadcrumb in my food, but I didn't know and I also didn't know if that small amount of gluten would cause me to break out so bad.

But now I know. We went to the same place last night (nothing else was open and we were starving). This time I found a piece of bread about the size of a pencil eraser on top of my meat (hubby again tried to tell me it was meat, but it SO wasn't). Turns out they keep the pork right next to the toast station (this is a BBQ place). ARGH!!!! I think the reason that I was able to eat there before and never had a problem was that we were going early in the day for lunch, and it hadn't been busy enough yet to get crumbs all over.

Carriefaith Enthusiast

How annoying! At least you now know the source of your troubles.

oakpoint9 Newbie

I can usually trace the source of my break out. I feel the itch 3-4 hours later, the rash appears within hours of that.

I try to be really careful, but you can not trust the manufacturing process.

I had tortilla chips yesterday, the label listed nothing in the gulten family, but I broke out mildly today. I assume it was cross contamination.

I read somewhere that McD's fries were fried in an assigned vat. I recently talked to a McD's owner, and that is not true.

I just feels like I can't get ahead of the game.

frenchiemama Collaborator

I know how you feel Oakpointe. I was JUST getting over my breakout from eating at the restaurant, when I drank some Tropicana OJ w/calcium on saturday. BIG MISTAKE. I felt sick right away, so I knew I was glutened and then within about 12 hours the first blisters showed up and now it's getting worse. GAH!

casnco Enthusiast

For those of you who break out immediately, you are so lucky! I took 6 weeks to break out the last time I was accidentally glutened. I was at a reception and was missinformed concerning the "rice" in a desert. I ate some and thought to myself, this doesn't taste like rice and the consistancy is questionalble. When I questioned the cook she said, rice or pasta, something like that, why are you getting sick?

!!!!!What!!!! Nice reply.

Anyway, I told you that to say, 6 weeks later, rash. 6 weeks after that. The rash is still here. Very mild on both accounts. Thank God. But those little gluten buggers must be able to float in my blood for a long time wondering where they want to land.

  • 7 months later...
mixmax74 Newbie

Clobex, a topical steroid cream clears me up in about 3 days and stops any itching. But can't be used long term because it thins your skin out.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
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      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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