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New Parent With Sick Child


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3 replies to this topic

#1 mca

 
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Posted 08 June 2004 - 09:09 AM

Can someone please help! I have a 11 year old son who has been sick since
birth.. he has Gluten and Lactose intolerence or allergy not sure which and a doctor says he has IBS.
but told me to give him only meat and veggies. nothing else but only he is saying it is that he has IBS. He stays tired and has joint pain often and loose bowels 24/7.
He is also very moody. I've seen him for the last 3 years get worse. wanting to vomit with most of his bowel movements. I live in West Virginia I've been to DC and Charlottsville Va. for treatment and not getting the help I think he needs..He doesn't understand all about this and I tell him he wouldn't be sick if he stayed on this diet. If some one has a doctor that is close or has any advise please fill me in.
Thanks
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#2 kejohe

 
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Posted 08 June 2004 - 04:12 PM

Hi mca, I'm so sorry your son is suffering so much. My son's doctor gave me the same IBS diagnosis before he decided to test for celiac, so I know how you feel.

My suggestion is to keep pushing your doc to test for celiac disease. The thing that sucks is that you have to keep your son on a diet that includes gluten, in order to get accurate results. However, in the meantime you can help him to feel a little better by trying a few things. My son's doc actually suggested fatty foods. I know it sounds a little crazy, but it worked wonders. Foods like mashed potatoes with a dollop of butter, or buttered veggies, mac and cheese, something like that. The extra fat is more difficult for the stomach to digest, so the system slows down and becomes less painful and it can help the body absorb some other nutrients from the foods and help him form less loose stools.

This doesn't work for everyone, but at this point anything is worth a try right? I know the first time I suggested this to someone I thought I was going to be told I was crazy, but several parents on this site said their docs had suggest the same thing and that it does work well.

Good luck and I hope this is helpful to you.
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Kathleen
Son has been gluten-free since December 2001

#3 DawnI

 
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Posted 17 June 2004 - 08:41 AM

please explain to your son about celiac disease - he will understand with more knowledge. My son was diagnosed last year - age 10. my 4.5 year old understands about gluten free - and also understands she just tested positivewith the' blood and now needs the biopsy. I've explained to her for the past year' - if she ever is positive for Celiac that she will have To change her diet.....

My son has adapted extreemely well. He wont cheat at all - and will Even Wash his hands if he touches something that has gluten in it.....There are lots of regular products that are gluten free - finding out what those are - are a challenge, but makes it worth the while in The end.

Dawn
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Dawn
Son - age 11 Sean, dx 4/03
daughter - age 4.5 Hope dx 7/04
In memory of husband Bob - undiagnosed celiac disease that lead to lymphoma - March 5, 2003

#4 dana_g

 
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Posted 17 June 2004 - 10:54 AM

Danna Korn's "Kids With Celiac Disease" is highly recommended reading. At age 11, your son can read labels, understand what gluten is, have a short list of safe snacks he can count on, understand never to accept food without checking first, and start getting active in his gluten-free lifestyle. My daughter is also 11 and was recently diagnosed. She's doing great, because we have been matter-of-fact with her, and so has her doctor. This gives them some control, and that is empowering! I, too, have celiac disease, and was relieved and broken hearted when she was diagnosed. The best thing you can do is take a deep breath. Then take another one! The single most important aspect in your boy's recovery is YOUR attitude. And the only treatment we have right now for celiac disease is to change his diet. So with all its compexities, and in the words of my daughter's doc, the diet is "a pain in the ***" but it's all we've got. There are tons of incredible people on this message board to help you. One of the first things I did was to ask my daughter which mainstream foods she wanted me to find gluten-free substitutes for. Then I looked through cookbooks, the internet, healthfood store, etc., and came up with alternatives. Kids are not exactly gourmets, and gluten-free, even dairy free alternatives are easy to come up with, especially from the folks on this message board, who are brimming with suggestions! Do not despair! And don't think you have to "fix" this today! Because you can't. It's a day-to-day learning process, and you will get better at it a little at a time. You've gotten better at it already, right? Think of where you were before...
I promise you there are kids in your son's school who have food allergies and can't eat the birthday cupcakes either--my daughter has a stash of Reese's PB cups for celebrations at school. Some of the other kids even buy them especially for her! And yesterday I had to stop one of her friends from eating all of her gluten-free pizza at a pool party! (He said it tasted like chicken--you know how 11 year old boys are!) My point is, life will normalize, or at least become a gluten-free normal. I was fairly freaked out at first, too. Both of my children were in the hospital at the same time for their biopsies--side-by-side hospital rooms for back-to-back biopsies--unbelievably stressful! I haven't always been this calm! But you will be okay. Keep in touch here. I know it 's saved me from going off the deep end.
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Gloriously gluten-free--Dana




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