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

Have You Ever Not Gotten Sick When You Know For Sure You've Been Glutened?

emcmaster

Recommended Posts

emcmaster Collaborator
emcmaster
Posted

Is it possible?

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Yup, I think that can happen. The longer you go gluten free, the more extensive the healing. In SOME people I think that the gluten needs to build up for a major reaction. In OTHERS, one crumb will do it.

Every one is different.

Ann1231 Enthusiast
Ann1231
Posted
Is it possible?

absolutely. I have to be extremely careful because I can eat gluten and not feel sick or anything. Other times I eat it and I have a really hard set-back. I know I was glutened last week when I ate out at one meal. I felt fine. Then this week I had gluten and have been suffering since. I sometimes have a hard time staying on my diet because I often don't get symptoms.

emcmaster Collaborator
emcmaster
Posted
  • Author

What if you usually react to hidden gluten, like cc? It seems odd that I could react to a crumb or particle and not react when it was a major ingredient...

blueeyedmanda Community Regular
blueeyedmanda
Posted

Sometimes nothing happens to me and others I spend the day in the bathroom. It is almost like the toss of the coin, it is strange.

Kassie Apprentice
Kassie
Posted
Sometimes nothing happens to me and others I spend the day in the bathroom. It is almost like the toss of the coin, it is strange.

same here

rez Apprentice
rez
Posted

Everyone is so different, I couldn't agree more. I've heard of a lot of people thinking they outgrew Celiac because they had no symptoms. My 8 year old was soooooooo sick and then we put him back on gluten for a challenge (after his tTG came back slightly positive after being gluten free for three months), and nothing happened. It took about a month to the day to start getting the reactions. Now he gets the tummy aches again and he has a mouth FULL of canker sores. It's still nothing like they used to be, although we found out he's lactose intolerant from a breath test. We're keeping him away from dairy or using Lactaid. It seems one of his most outward symptoms was a lactose intolerance. We are having him biopsied next week. This is one important reason I want to find out for sure, because sometimes there are no evident reactions. They say most of the people right now are asymptomatic.

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

Celiac.com Sponsor (A8-M):


Guhlia Rising Star
Guhlia
Posted

Actually, I get MUCH sicker from CC than I do if I accidentally eat a gluten ingredient. For example, I get sick from just a crumb if I'm eating out, but if I sat down and ate a piece of pizza I probably wouldn't get sick at all. When I did my gluten challenge a year and a half ago I made it just over a month eating gluten every single day at every meal and snack before i started to get sick. When I started to get sick I only ever got really fatigued and slept a lot. I never did get the major gastro symptoms. I just couldn't deal with being so foggy and tired. If I get CC'd I generally end up with stomach cramps and diarrhea. Luckily, I don't stay sick for very long, generally not more than 24 hours. I get mouth sores too when I get glutened, but I didn't get any when I did my gluten challenge.

I think that maybe (just my opinion) this is because my immune system is very strong when I'm gluten free and it reacts to CC violently, but when I'm eating gluten it gets kind of overwhelmed and sort of shuts down. That's just the way I see it.

Maybe you react to gluten like I do.

emcmaster Collaborator
emcmaster
Posted
  • Author
I think that maybe (just my opinion) this is because my immune system is very strong when I'm gluten free and it reacts to CC violently, but when I'm eating gluten it gets kind of overwhelmed and sort of shuts down. That's just the way I see it.

Maybe you react to gluten like I do.

This makes A LOT of sense to me. Thanks for taking the time to explain it!

CMCM Rising Star
CMCM
Posted

In one of my celiac books I remember reading about a similar subject....it said the body actually has an adaptation ability....that when you eat gluten the body can over adapt to the "poison" gluten, hence you may not react, but over time you get overloaded and the adaptation ability breaks down. Something like that, it made some sense to me when I read it. I had always been puzzled by never quite knowing when I'd be affected. Sometimes seemingly not at all, other times quite severely.

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. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    2. trents
      - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient. The one test that was ordered...
    3. mamaof7
      - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful...
    4. Dizzyma
      - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me. My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free i...
    5. tiffanygosci
      - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,956
    • Most Online (within 30 mins)
      7,748
    Srowton
    Newest Member
    Srowton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Help understand results

      By trents · Posted

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      Help understand results

      By mamaof7 · Posted

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.