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

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

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

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

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Dakota4
    Newest Member
    Dakota4
    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

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.