Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,118
    • Most Online (within 30 mins)
      7,748

    Momoosa
    Newest Member
    Momoosa
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      You may be reacting to some of the ingredients used to imitate gluten products. I eat Amy's Chilli quite often with no problems. When I eat Bush's chilli beans or Hormel Chilli with the same ingredient list, I get heartburn.  Break out the alka seltzer.   Barillo spaghetti has CORN FLOUR, RICE FLOUR, MONO AND DIGLYCERIDES. Udi's White bread Ingredients - water, tapioca starch, brown rice flour, canola oil, dried egg whites, sugar, tapioca maltodextrin, tapioca syrup, sorghum flour, less than 2% of: rice starch, sorghum grain, flaxseed meal,  gum blend (xanthan gum, sodium alginate, guar gum), apple cider vinegar, apple fiber, molasses, salt, amaranth flour, teff flour, yeast, cultured brown rice, locust bean gum, enzymes Chobani Greek Yogurt Cultured nonfat milk, cane sugar, water, natural flavors, fruit pectin, guar gum, locust bean gum, vanilla extract, lemon juice concentrate.
    • Soleihey
      My TTG was 167 one year ago. Recently had it retested one month ago and it went down to 16. I only recently had an endoscopy done as I was pregnant within the last year. I did not eat gluten prior to this endoscopy as I get very sick. Prior to obtaining the biopsies, the endoscopy said “ diffuse moderately erythematous mucosa to the second part of the duodenum without bleeding.” However, the biopsy came back negative. I assume it’s a false negative as I have also had genetic testing to confirm celiac. However, what would cause the inflammation to the second part of the duodenum and continued positive blood markers if the intestines have healed?
    • TerryinCO
      Thank you for direction.  Eating out is a concern though we rarely do, but I'm prepared now.
    • trents
      This might be helpful to you at this point:   
    • cristiana
      Thank you for the update.  So interesting to know how things are changing, when I was diagnosed I had very similar blood results but still had to have the endoscopy.  Glad you know where you stand.  As your father has celiac disease you probably already know a lot about it, but do contact us if we can help further.
×
×
  • Create New...