Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Long Until You Stopped Breaking Out?

frenchiemama

Recommended Posts

frenchiemama Collaborator
frenchiemama
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

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
frenchiemama
Posted
  • Author

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
cdford
Posted

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
frenchiemama
Posted
  • Author

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
oakpoint9
Posted

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
Carriefaith
Posted
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.
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cdford Contributor
cdford
Posted

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
frenchiemama
Posted
  • Author

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
Carriefaith
Posted

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

oakpoint9 Newbie
oakpoint9
Posted

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
frenchiemama
Posted
  • Author

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
casnco
Posted

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
mixmax74
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    2. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    3. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    4. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Medications

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fa...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,189
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Gluten tester

      By Scott Adams · Posted

      I am not aware of an air detector for gluten, but Nima Partners sells a device that can detect gluten in minutes in a small sample of a meal or food that you eat. They are also a sponsor here for full disclosure: https://nimanow.com
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.