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

Long Time Celiac But Experiencing New Problems Need Some Guidance


swatson

Recommended Posts

swatson Rookie

hi. I have been diagnosed with celiac since 1996. I had my share of two years of mistakes trying to adhere to this diet. For about 5-6 years I had hardly any mistakes and felt great. I know every ingredient and what to look out for. Recently for about a year now I have been experiencing gluten attacks similar to when I was first diagnosed. I know for a fact that I ate something over the holidays with either soy or gluten at a restaurant. I found out after begging them and talking to the chef to keep it free of everything. I had an immeditae reaction. I would like to know if anyone has the same kind of reaction that I have. About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.

I also have little white blisters on my forehead. Please let me know if anyone else has these same

symptoms.

Also does rice bother anyone?

thanks.


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



Celiac.com Sponsor (A8-M):



Merika Contributor

Hi,

I don't get the skin stuff. I do get stomach problems, nausea, anxiety and fatigue. And the symtpoms follow a predictable pattern day by day after the event, like you said.

Sorry you've been glutened/soyed. :( That sucks. I've been gluten-free for 2 years, and done really really mess-up free for the last 1 1/2 yrs, until we had a little get-together with some neighbors who brought a pie, and I was careful, but there must have been some cross-contamination because both ds and I got sick.

Merika

hope you're feeling better soon

PS. my son gets tiny skin bumps when he eats eggs...

CeliaCruz Rookie

I get the white blisters. I think. Do they resemble acne? I used to think they were whiteheads and I'd try to pop them but they were unpoppable -- almost like warts or something. I get them all over my face. I told my dermatologist that I was a Celiac and suggested to him that these might be DH, but he assured me they weren't DH and put me on anti-biotics to clear them up. They've gotten "better" but they haven't totally cleared up.

The redness on the ears sounds like it might be rosacea -- which I also have. Do you notice that the flareups happen when you've just had alcohol or caffiene?

Carriefaith Enthusiast
About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.
Those symptoms are very similar to mine. I also get a rash/hives, severe stomach pain, depression, increased anxiety to the point where I get heart palpitations, and I also get GI problems. I actually just had a mild gluten reaction this week and I got a rash/hives over most of my legs. The rash was hot after being outside in cold temperatures and after a shower.
Rusla Enthusiast
I get the white blisters. I think. Do they resemble acne? I used to think they were whiteheads and I'd try to pop them but they were unpoppable -- almost like warts or something. I get them all over my face. I told my dermatologist that I was a Celiac and suggested to him that these might be DH, but he assured me they weren't DH and put me on anti-biotics to clear them up. They've gotten "better" but they haven't totally cleared up.

The redness on the ears sounds like it might be rosacea -- which I also have. Do you notice that the flareups happen when you've just had alcohol or caffiene?

I get the same thing and my dermatologist said the exact same thing. I told him to humor me and do a skin biopsy and it came back positive. Do yours itch and you get a rash with them? Mine only happen when I have been glutened.

luvs2eat Collaborator

No rashes here... but I'm experiencing similar "attacks" (all intestinal) after years of being fine. I think I've gotten quite careless and have been accidentally glutened several times in the past month. For example... I JUST learned that many of the light sour creams have modified food starch... I've NEVER even looked at the label, cause how would wheat, etc. go in sour cream???

I am back to reading EVERY SINGLE LABEL EVERY SINGLE TIME. When did I become so confident and stop doing that anyhow??

swatson Rookie
hi. I have been diagnosed with celiac since 1996. I had my share of two years of mistakes trying to adhere to this diet. For about 5-6 years I had hardly any mistakes and felt great. I know every ingredient and what to look out for. Recently for about a year now I have been experiencing gluten attacks similar to when I was first diagnosed. I know for a fact that I ate something over the holidays with either soy or gluten at a restaurant. I found out after begging them and talking to the chef to keep it free of everything. I had an immeditae reaction. I would like to know if anyone has the same kind of reaction that I have. About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.

I also have little white blisters on my forehead. Please let me know if anyone else has these same

symptoms.

Also does rice bother anyone?

thanks.

hi. I have been diagnosed with celiac since 1996. I had my share of two years of mistakes trying to adhere to this diet. For about 5-6 years I had hardly any mistakes and felt great. I know every ingredient and what to look out for. Recently for about a year now I have been experiencing gluten attacks similar to when I was first diagnosed. I know for a fact that I ate something over the holidays with either soy or gluten at a restaurant. I found out after begging them and talking to the chef to keep it free of everything. I had an immeditae reaction. I would like to know if anyone has the same kind of reaction that I have. About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.

I also have little white blisters on my forehead. Please let me know if anyone else has these same

symptoms.

Also does rice bother anyone?

thanks.


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



Celiac.com Sponsor (A8-M):



traveljunkie Rookie

Hello swatson,

I have a similar reaction as yours...my ears get red hot too! Then I break out in a rash and diarrhea typically the next day. I must admit I ate gluten knowingly as well in the past few weeks. (cheese bread and a piece of cake) The next day I definiatly had brain fog...couldn't think of the right words to say! :(

The only time rice bothered me was when I was really sick and didn't know what was causing it. Everything bothered me, but now rice is a staple in my diet. I have heard that it can bother some people, everyone is different and if your intestines are irritated, it's more likely you'll be more intolerant to a lot of different foods.

Charlene

Pegster Apprentice

I also get the bumps (like little blisters for me) when I'm glutened. I have definitely been diagnosed with DH so I always just assume that's what it is. I have been gluten-free for nearly two years and it always seems to be a restaurant that messes me up. I have also had the red ear thing, but I never associated it with gluten! Hmmm.

Archived

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

  • 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. - Shellly posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      New labs are now very elevated

    2. - Scott Adams replied to Elena1234's topic in Gluten-Free Restaurants
      3

      Is Cracker Barrel`s gluten-free menu safe for kids with celiac disease?

    3. - trents replied to Elena1234's topic in Gluten-Free Restaurants
      3

      Is Cracker Barrel`s gluten-free menu safe for kids with celiac disease?

    4. - Russ H replied to Elena1234's topic in Gluten-Free Restaurants
      3

      Is Cracker Barrel`s gluten-free menu safe for kids with celiac disease?

    5. - Elena1234 posted a topic in Gluten-Free Restaurants
      3

      Is Cracker Barrel`s gluten-free menu safe for kids with celiac disease?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,181
    • Most Online (within 30 mins)
      7,748

    Lisa Miller
    Newest Member
    Lisa Miller
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Shellly
      Hello, I was very stick,  with flu like symptoms, but my virus panel came back negative and we couldn’t figure out what’s going on. The doctor then added a celiac panel.  Has anyone ever had such a dramatic change?  What are the odds this is true celiac I am going to have an endoscopy, but it’s expensive and I just feel like why can’t the labs be enough? 
    • Scott Adams
      Eating out in general is full of risks, but this article may help:  
    • trents
      This kind of question is always difficult to give a definitive answer to because of so many variables. One such variable is the sensitivity of the individual celiac to small amounts of gluten cross contamination. An amount that causes a reaction in one celiac many not in another, or at least not be discernable which, of course, does not exactly equate to being "safe".
    • Russ H
      I don't live in the US, but based on this thread, I wouldn't risk it:   https://www.reddit.com/r/glutenfree/comments/1n2ehw8/cracker_barrel/   This app is helpful: https://www.findmeglutenfree.com/
    • Elena1234
      I see that Cracker Barrel restaurants have a gluten free menu (not all locations, but one confirmed that they do). I was wondering if it is safe for my 5 year old son with celiac disease? 
×
×
  • 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.