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

Horrific Glutening

Emily Elizabeth

Recommended Posts

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted

I have been horribly sick for 32 hours now and am starting to wonder if this is a "normal" celiac related glutening or if I am sick with something else. It is like I have been taking the colonoscopy prep pills for 32 hours straight (seriously - no exaggeration). Has anyone else been glutened this badly? If so, do you have any advice on how to get through it? I'm scared to eat anything so I'm making jello and drinking tea with honey in it. Thanks in advance for your help!

__________________________________________

Diagnosed with Celiac Disease 5/15/07

no other allergies that I know of

gluten free for about 6 months with occasional accidental glutenings

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

Celiac.com Sponsor (A8-M):


confused Community Regular
confused
Posted

yes i have had it that bad, what i do sometimes is gbo on the brat diet, well minus the toast and it helps me feels somewhat better and lots of gatorade.

hope you feel better soon

paula

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
  • Author

Thanks so much for posting this. I'm glad to hear that I'm not alone in this experience and I'm not dying! I'd never heard of the Brat diet before so I googled it. It definitely looks like a good plan. I just wish now that I knew what glutened me. It'd be worth it if I had a nice big slice of pizza for all this pain. :)

yes i have had it that bad, what i do sometimes is gbo on the brat diet, well minus the toast and it helps me feels somewhat better and lots of gatorade.

hope you feel better soon

paula

Lisa Mentor
Lisa
Posted

Yes, the BRAT diet can help ease the symptoms, a little.

Banana, Rice, Apple Sauce and Tea.

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
  • Author

Thanks for your help! I just tried eating rice in chicken bouillon so we'll see how that goes. It can only get better at this point I think!

Yes, the BRAT diet can help ease the symptoms, a little.

Banana, Rice, Apple Sauce and Tea.

buffettbride Enthusiast
buffettbride
Posted

If it helps any, my non-Celiac child has had awful poopies since last Friday. We call them the uberpoopies. Nothing solid has come out of that boy in almost a week.

I hope you get to feeling better soon.

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
  • Author

It does help, thanks! It's nice to know that I'm not crazy over here. I really appreciate all of the responses. I called my doctor twice this morning and emailed yesterday and have not heard anything back. This board is such a comfort. I am so thankful to be able to have such a large and knowledgeable support group! Thank you very much!

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

Celiac.com Sponsor (A8-M):


JNBunnie1 Community Regular
JNBunnie1
Posted
I have been horribly sick for 32 hours now and am starting to wonder if this is a "normal" celiac related glutening or if I am sick with something else. It is like I have been taking the colonoscopy prep pills for 32 hours straight (seriously - no exaggeration). Has anyone else been glutened this badly? If so, do you have any advice on how to get through it? I'm scared to eat anything so I'm making jello and drinking tea with honey in it. Thanks in advance for your help!

__________________________________________

Diagnosed with Celiac Disease 5/15/07

no other allergies that I know of

gluten free for about 6 months with occasional accidental glutenings

I think you're fine, but ask yourself a couple questions. What ELSE feels wrong? Are you vomiting? Any funky rashes? I don't think jello will help, the brat idea is much better. Other than that, do you generally feel the way you did last time you got glutened?

Generic Apprentice
Generic
Posted

I used to ride it out, sometimes I would end up in the ER for dehydration, since I would have both ends going. I don't get that sick anymore since i went to acupuncture.

I suggest imodium (not the liquid kind, I think it has gluten in it). It will slow the D or completely stop it.

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
  • Author

Those are good questions. I haven't felt this way since I was glutened only a few weeks after being diagnosed after eating out at PF Changs. I was up in the middle of the night a few times with D, but it didn't last nearly as long as this. Nothing else feels wrong really. I am only tired from being kept up all night with D from what I can tell. I do have a little bit of the ichy upper leg that I used to have, the foot cramping and the blood blister inside my mouth is back. Ohter than the jello, I have eaten rice with bouillon or with just water and salt and applesauce all day long. I do feel better. I haven't had to go in a long time so thats good. I'm hoping that I will actually sleep through the night tonight.

Thank goodness for this support group. My doctor/nurse never responded to the message I left. I go to Dr. Fasano in MD. Is this not something that GI doctor's help with? Should I have called my regular doctor first? Thanks!

I think you're fine, but ask yourself a couple questions. What ELSE feels wrong? Are you vomiting? Any funky rashes? I don't think jello will help, the brat idea is much better. Other than that, do you generally feel the way you did last time you got glutened?
JNBunnie1 Community Regular
JNBunnie1
Posted
Those are good questions. I haven't felt this way since I was glutened only a few weeks after being diagnosed after eating out at PF Changs. I was up in the middle of the night a few times with D, but it didn't last nearly as long as this. Nothing else feels wrong really. I am only tired from being kept up all night with D from what I can tell. I do have a little bit of the ichy upper leg that I used to have, the foot cramping and the blood blister inside my mouth is back. Ohter than the jello, I have eaten rice with bouillon or with just water and salt and applesauce all day long. I do feel better. I haven't had to go in a long time so thats good. I'm hoping that I will actually sleep through the night tonight.

Thank goodness for this support group. My doctor/nurse never responded to the message I left. I go to Dr. Fasano in MD. Is this not something that GI doctor's help with? Should I have called my regular doctor first? Thanks!

Oh, itchy leg foot cramps- that's a glutening! You don't get that stuff from a stomach bug.

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
  • Author

I'm sure you're right. I really wish that I knew what caused it. I was on a cruise a couple weeks ago where I'm sure I was mildly glutened the whole time - stomach distention, multiple trips to the bathroom and irritability. I don't think I had ever really gotten over it and I certainly wasn't being super careful about cc and such like I used to be. I wonder if getting glutened slightly for a long period of time will cause a big reaction later? Like a breaking point or something? Anyway, I will now go back to being a crazy OCD person about gluten. I certainly learned my lesson!

Thanks again for your help. It means a lot to be able to talk with people who have gone through this.

Oh, itchy leg foot cramps- that's a glutening! You don't get that stuff from a stomach bug.
LilyCeliac Rookie
LilyCeliac
Posted

It really is the worst. Your not alone.

And I know how you feel about the non responsive Doctors. Even if they did respond they probably wouldn't have useful information. Thats been my experience.

I also have to rely on this forum for information cause its almost impossible to get it anywhere else.

The last time I felt really sick I was so nauseous and I took two gravol and it knocked me out and I slept like a baby and when i woke up I felt so much better! The Pharmacist told me gravol was gluten free so I'm hoping that was correct.

Also I agree with the Gatorade suggestion. That always seems to help me when I'm feeling sick and also when I have no appetite.

Emily Elizabeth Enthusiast
Emily Elizabeth
Posted
  • Author

Yeah, you're right about the doctors. I called again yesterday to ask if I should call my regular doctor rather then them (GI doc) when I am having a problem since I didn't get a call back the day before. I was then put right in contact with the nurse. She was very nice and said she wasn't in the day before so that is why I didn't get a call. She did say that I could call either them or my regular doc when I'm having problems or have questions. You're right though, in the end, I really get the most information from this board as far as coping with symptoms and such. She didn't tell me anything that I hadn't read here. I'm so thankful for this board!

It really is the worst. Your not alone.

And I know how you feel about the non responsive Doctors. Even if they did respond they probably wouldn't have useful information. Thats been my experience.

I also have to rely on this forum for information cause its almost impossible to get it anywhere else.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,678
    • Most Online (within 30 mins)
      7,748
    Kristina S
    Newest Member
    Kristina S
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.