What Does It Feel Like?
Posted 09 March 2011 - 02:11 PM
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.
Son1-lifelong diarrhea and generally unwell. Diagnosed March 2010 with positive blood work end endoscopy-finally feeling better August 2011
Son2-Diagnosed August2011 Bloodwork only.
Me-Positive bloodwork October 2011, Endoscopy booked November 15th.
Daughter1-no symptoms, negative bloodwork twice
Daugher 2- no symptoms, no bloodwork yet.
Posted 09 March 2011 - 02:18 PM
Posted 09 March 2011 - 02:41 PM
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.
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
Posted 09 March 2011 - 02:57 PM
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.
Posted 09 March 2011 - 03:52 PM
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk & Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis
( )_( )
(")_(") Eat your vegetables!
Posted 09 March 2011 - 03:55 PM
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
Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.
Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free
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