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What Does It Feel Like?


concernedmamma

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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


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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

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
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    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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