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
      126,820
    • Most Online (within 30 mins)
      7,748

    Maclissa
    Newest Member
    Maclissa
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • ABP2025
      Got it. Thanks Scott. I'll set up an appointment with a GI after the holidays and get all the celiac disease screening done. Thanks to this amazing forum and to all who have answered my question, I now know what my next steps are.
    • ABP2025
      Aah it sucks that there's no definitive way to confirm NCGS or celiac. I've found a GI clinic that is covered by my insurance and I'll contact them after the holidays to setup an appointment. I hope to get some sort of clarity with further tests. 
    • ABP2025
      Thanks @knitty kitty. I didn't know about thiamine deficiency before you had mentioned it. I'm doing more research into what it is and how I can test for that deficiency. Is Vitamin B1 test the best way to find it? I saw that there is another test: Erythrocyte transketolase activity coefficient (ETKAC) assay to test for thiamine deficiency but I'm not sure how that test is done. Is that something I can take on my own or do I need GI referral. If it does turn out that I'm thiamine deficient, does that confirm that I have celiac disease or could it just mean that I have not been consuming Vitamin B1 rich food and once I address that with a supplement or food, I would no longer be thiamine deficient? Also full disclosure, I'm a vegetarian and only last year I found out that my Vitamin D level was very low. It was 3.7 ng/ml and the ideal range is >29.9 ng/ml. After a year of taking multivitamin supplement, my Vitamin D level has gone up to 27 ng/ml. Though it's better than 3.7 ng/ml, it's still below the range. I'm not sure for how long my Vitamin D level was around 3.7 ng/ml before 2023 as I didn't have my Vitamin D test taken prior to that. My doctor also wanted to check my Vitamin B12 level as I might not be getting enough of it from vegetarian sources. When I took that test last year, Vitamin B12 was 247 pg/ml and ideal range is 200-1100 pg/ml. So it's still within the range though it's on the lower end of the ideal range. I also have recently started taking vitamin b-complex tablets daily. I've never checked other Vitamin B levels including Vitamin B1. Do you know if such a very low level of Vitamin D and moderately lower level of Vitamin B12 would cause celiac disease or may contribute to some of the symptoms I've been experiencing? Regarding the DNA test to test celiac genes, are you referring to HLA DQ2 and HLA DQ8 tests? As soon as I got the result where my IgG was above range, I had ordered the "HLA Typing for Celiac Disease" test in Quest Diagnostics which measures HLA DQ2 and HLA DQ8. The test is 2 weeks from now and I'll post my results here once I receive them.  
    • Russ H
      Small amounts of gliadin are detectable in some samples of human breast milk but these are at too low a level to cause symptoms. No gliadin has been detected in the beef of grain-fed cattle.   https://pmc.ncbi.nlm.nih.gov/articles/PMC5622696/
    • knitty kitty
      Welcome to the forum, @Kiwifruit, I agree further testing is needed.  Disaccharidase deficiency is a symptom of Celiac disease.   On your test results, this line  "IgA: 0.9 g/l (norm 0.8 - 4.0)" is referring to Total IgA and it's very low.  People with low or deficient Total IgA should also have DGP IgG test done.  Low Total IgA means you are making low levels of tTg  IgA as well, leading to false negatives or "weak positives".  Maybe a DNA test for known Celiac genes.   Anemia, diabetes, and thiamine deficiency can cause test results like these.  Get checked for B12 deficiency anemia and have your iron (ferritin) checked.  Vitamin D deficiency is common, too.   Might be time to find a gastrointestinal doctor who is more familiar with diagnosing Celiac Disease.   Best wishes on your journey!  Please keep us posted on your progress.  
×
×
  • Create New...