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    shygrneyzs's Avatar
    shygrneyzs Posts: 5,017, Reputation: 936
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    #1

    Nov 17, 2006, 06:45 AM
    Celiac Disease Related


    My youngest son was positively diagnosed with Celiac Disease six months ago. He had an ED done then and blood tests. The blood tests came back negative but the biiopsies clearly showed evidence of the disease and so began the treatment.

    My question is has anyone heard of complications with the small intestine closing off due to Celiac Disease? My son has had follow-up ED's done every three months - the last one on Nov. 15th. His doctor had to dilate the opening to the small intestine again - that makes the third time that had to be done.

    He is scheduled to see a lower GI specialist December 8th for consult and schedule a colonscopy.

    Any suggestions, ideas, opinions, on what I should be asking and expecting are appreciated. Thank you.
    J_9's Avatar
    J_9 Posts: 40,299, Reputation: 5646
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    #2

    Nov 17, 2006, 06:53 AM
    Wow, shy, I am sorry to hear that! How old is he?

    From my understanding this is not really uncommon. Celiac disease affects so many people in so many different ways.

    I am sure you have him on a 100% gluten free diet. How is he tolerating that?
    shygrneyzs's Avatar
    shygrneyzs Posts: 5,017, Reputation: 936
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    #3

    Nov 17, 2006, 07:09 AM
    Brandon is 18, soon to be 19. He also has Down's Syndrome. Yes, I am following the glulten free diet to the T. Almost made my own religion out of it. LOL. No one wants to go grocery shopping with me because I read every label before I put it in the cart and I ask the butcher a lot of questions about additives and glazes in/on the meats.

    Thankfully my son is not a fussy eater, he loves food. He was a big pasta eater and that was a disappointment until I found the gluten free pasta. I send his meals to school so I do not worry about what he gets there and he is not a snack person unless it is puddings or yogurt or fruit, which I send too. I try to cover every base and yet I still worry that somewhere there is gluten out there waiting. I have this mental picture of a nasty looking amoeba type critter called gluten out there stalking my grocery list. It does help. Lol

    His specialist told me Wednesday that his Celiac Disease is improving, according to the biopsies. Just that piece about the small intestine which worries me. If there is something else I can do I want to know.
    J_9's Avatar
    J_9 Posts: 40,299, Reputation: 5646
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    #4

    Nov 17, 2006, 07:31 AM
    I am not sure what else you can do. You are a terrific parent though because following a gluten free diet here in the states is like IMPOSSIBLE!! Great job, I have to hand it to you.

    You deserve a major pat on the back for what you are going through. I can understand Downs, as my brother-in-law has a mild form with some severe mental disabilities. He is 47, but can argue over video games with my 4 year old, it is quite amusing actually. Trying to put him (my brother in law) on a gluten free diet would be like mixing oil and water. You just can't take the macaroni anc cheese and hot dogs away from that man.

    Back to you though. What I have read, and I am not a doctor by any means, I understand that this does happen to some people and is in no way unusual. I wish I could help more.

    I would like you to keep me updated on what you learn though. I find this all very interesting.
    ladyandjan's Avatar
    ladyandjan Posts: 191, Reputation: 4
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    #5

    Dec 2, 2006, 07:48 PM
    Have you done an internet search regarding celiac disease? My sister-in-law had the gene test done and she would have had it but is on a gluten free lifestyle to avoid it as it is what caused her mom to become so ill and die eventually from celiac disease. Gluten is really no good for anyone, man nor beast. Remember the Diamond Pet that was recalled? That had moldy wheat in it which killed a lot of dogs and made others quite sick. I would obtain more information for myself about curing this before letting the doctors do all those things. A healthy, organic diet is the best way. Hope this helps.
    J_9's Avatar
    J_9 Posts: 40,299, Reputation: 5646
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    #6

    Dec 2, 2006, 07:55 PM
    Quote Originally Posted by ladyandjan
    I would obtain more information for myself about curing this before letting the doctors do all those things.
    Just so you know, Celiac Disease is not a curable disease.

    Shygrneyz is doing a great job as a mother, and the internet is not always the best place to go when you have a disease such as Celiac.
    shygrneyzs's Avatar
    shygrneyzs Posts: 5,017, Reputation: 936
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    #7

    Dec 3, 2006, 06:07 PM
    An update -- Brandon has his colonoscopy this past Friday and the results were negative as to any damage due to Celiac Disease. I asked the Dr. about the small intestine closing off and he said that there was scar tissue at the opening of the small intestine. I know Brandon had an ulcer at one time but that has been healed for almost two years and he does not have any problems with ulcers. But there too, I watch what he eats and keep the offensive foods out of his diet. So every three - six months that opening to the small intestine will need to be dilated. I guess I can live with that. He is asleep when that happens and thankfully does not remember it. From what both the upper and lower GI specialists told me, this will pass in time hopefully.

    One piece of great news - Brandon loves oatmeal and it has been so hard to keep him away from it. Finally found a gluten free oatmeal. The stores here are just not in tune to a variety of health needs yet but they are slowly improving. Also found a local support group that meets twice a month with one of the meetings a cooking class. So it is getting better. Everything in small steps.

    I agree with J_9 - the internet is not the best place to find information on Celiac Disease. It is a good place to start but I do not believe everything I read - in fact I have printed off some information and shown it to Brandon's dietician and she pointed out some flaws. Best to take net information with a grain or two of salt.
    J_9's Avatar
    J_9 Posts: 40,299, Reputation: 5646
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    #8

    Dec 3, 2006, 06:14 PM
    Wow, I am glad everything went so well. I was wondering when "we" would get the results.

    Oh, and the oatmeal!! Good to hear as well. I don't know about ND, but here in TN if you find a certain product that is a health necessity some of our smaller stores will order it.

    I am sure you tried that though.

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