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

What Does It Feel Like?

concernedmamma

Recommended Posts

concernedmamma Explorer
concernedmamma
Posted

Can you please explain to me what it feels like when you get 'glutened'. My son is 5.5, was diagnosed through blood work and positive biopsy almost a year ago. Just recently are we starting to see some clarity to his symptoms, with a bit of a pattern. He got 'something' in the last day or so, came home from school yesterday with a sore tummy, didn't want to eat supper, woke up a few hours later with explosive diarrhea. Ate a small breakfast, and went to school. As he was walking out the door he told me his tummy felt sick. I, being a mean mommy, (?) still had him go to school. His kindergarten teacher sent me an email stating he was chatty and smiling at school, but was saying his tummy hurts and he wants to come home. We agreed that since he is still participating in class, and not running to the bathroom constantly that he should stay at school.

Am I being unfair? My thought is that he has to live with this for the rest of his life. I hope that we are able to tweak his diet and eating habits enough that he doesn't suffer from symptoms too often. However, I also don't want to set the standard that he can stay home at the slightest sore tummy. BUT I don't have celiac. I don't know what he is feeling. Am I being unfair in sending him to school? Please help me understand, a little bit, what he may be feeling.

Thank you!

Kim

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

Celiac.com Sponsor (A8-M):


GFreeMO Proficient
GFreeMO
Posted

I'm sorry that your little guy got glutened. For me, I know that I wouldn't be able to sit at school while I am having a reaction. It feels like I have glass in my intestines with a plug up my rear to trap the gas and I feel like I have the flu...so yeah, if he feels anything like that, I wouldn't make him go to school if he was glutened. A regular stomach ache and a glutened stomach ache feels NOTHING alike. It's not just a stomach ache but intestinal pain.

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm sorry that your little guy got glutened. For me, I know that I wouldn't be able to sit at school while I am having a reaction. It feels like I have glass in my intestines with a plug up my rear to trap the gas and I feel like I have the flu...so yeah, if he feels anything like that, I wouldn't make him go to school if he was glutened. A regular stomach ache and a glutened stomach ache feels NOTHING alike. It's not just a stomach ache but intestinal pain.

Couldn't have described it better myself. My intestines hurt so much when I get glutened that I can't even button my jeans and my stomach pain could be best described as feeling like someone is stabbing me under my ribs and turning the blade slowly. It has been bad enough at times that I wondered if I was having a heart attack. That's when I start chugging pepto since I know if it is gluten the pepto would help. I should note you should not give pepto to your child without talking to his doctor first even though it is an otc med.

eatmeat4good Enthusiast
eatmeat4good
Posted

I had this as a child, and my mother always sent me to school. Another stomach ache? Well, just go to school and you will feel better. I felt dizzy, nauseous, anxious, scared out of my mind but didn't know why. I "knew" others didn't feel this way. I could tell by how they acted. I knew I wanted to be normal, so I acted like they did. I had sharp stomach pains that made me want to double over, but I stood staight up to be a big girl and stay with all the rest. When I got home, I collapsed. This happened over and over. I always wondered why my mother didn't believe me. I'm 47, been faking it my whole life. Feeling dizzy nauseous, spacy weak,shaky anxious, nervous confused. But I hung with the rest of em...because my mother expected it and my teachers did too. I did stay home some days, but then there was never an answer to why I was sick so I just "learned to live with it" But I was miserable.

Fast forward to being a mom. My son started getting stomach aches at 6. He often told me he didn't feel well. I kept him home, but I couldn't make him well and neither could his Dr.'s. He developed severe asthma and had to stay home for that as well, but there was this huge fatigue and lethargy that I couldn't understand. Eventually the Dr. said to me, "Mom, you are spoiling him. You need to send him to school." So I forced him to go. The teachers called me to come get him if he was unable to walk, fell asleep at his desk, or vomited or had an asthma attack. There was one day, his head was lolled against the side of the car. He said, "Mom? Don't you believe me I'm sick?" I snapped back to reality and stopped forcing him to go. He was VERY sick. Took him to the Dr. same answer...send him to school. Months and years of this strange illness that came and went, but mostly stayed. Anyway, I wish I hadn't forced him to go when the Dr. told me I should. I even knew how it felt and I still went through a time of making him "act right".

They eventually told me "there is an emotional component to asthma." BS. That was just BS. He was sick. Finally found Celiac for both of us. Now, if he gets glutened I don't send him to school until he feels able to or wants to. Yes, he has a lot of absences, but it feels really bad to be sick and have to stay in school and try to act normal. Of course he knows he can't just lay down in a corner. It isn't socially appropriate.

It's hard to say, cause some reactions are worse than others and some last longer than others, but even at his age, I would think he will tell you how he feels. I ended up using a scale of 1 to 10 with my son. 1 is well enough to function and 10 is I gotta go to the emergency room. If you have some talks with him about how he feels, you might better be able to judge.

You can't always know, but I wouldn't want to sit in class if I were glutened. Luckily I know how bad it feels too. That was a good question mom! I hope I didn't give you too much information.

Salax Contributor
Salax
Posted

The glass through your gut concept is brillant. I feel like that plus the dizziness, vomiting, headache, and D. A tummy ache is one thing. A glutened tummy ache is a whole other ball of icky. It does feel like some one is slicing you up from the inside. Hope that helps. :( Sorry your little one is going through this, I can't imagine.

txplowgirl Enthusiast
txplowgirl
Posted

Oh Mom, hugs to you and your little one.

I remember what it felt like having to go to school when I felt bad. There were days when I was just flat out tired, no energy and bad stomach aches. They would range from just slightly achey to sharp stabbing pains with nausea.

My parents didn't seem to wanna listen and I was really angry with them. I couldn't stay home unless I was vomiting or spending a lot of time in the bathroom.

I didn't get good grades in school because I was just so miserable. My brain didn't want to function, I couldn't keep my concentration and I would fall asleep in class.

I hope you can keep him gluten free because those days will be better. Good luck

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. trents
      - trents replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference...
    2. lalan45
      - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things ...
    3. Russ H
      - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled...
    4. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation...
    5. Scott Adams
      - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748
    lalan45
    Newest Member
    lalan45
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • trents
      Am I nuts?

      By trents · Posted

      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      My journey is it gluten or fiber?

      By lalan45 · Posted

      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      Anti-endomysial Antibody (EMA) Testing

      By Russ H · Posted

      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      Just diagnosed today

      By Scott Adams · Posted

      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Am I nuts?

      By Scott Adams · Posted

      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
×
×
  • 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.