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. dixonpete
      0

      Hookworm load planner

    2. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    5. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,089
    • Most Online (within 30 mins)
      7,748
    Clare Durham
    Newest Member
    Clare Durham
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.