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11 posts in this topic

heya there. just registered. dunno if i do everything right.

ok, i start.

my best friend has been diagnosed with Celiac about two years ago but it seems it's a lot more than just that. it's all related but he's got so many diagnoses that he doesn't even know half of them.

he keeps going into anaphylactic shock. his bones are a bit fragilised, he's started to walk with difficulty.

now doctors say his chances to survive are extremly thin... :(

I keep checking out sites and books to get info, but i'm getting a bit lost... does anyone know why he's so screwed up and getting worse every single day?

Leela

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If he is celiac and still consuming gluten even in trace amounts, he will continue to get sick. It could be that the damage before diagnosis was so severe that it was already too late to save him. It could also be that something entirely different is causing the decline. I am very sorry about your friend. I hope you get answers and peace with what is happening to him.

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thanks for having tried to answer, it means a lot.

answers, maybe. peace, never.

Leela

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Please just keep us posted.

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I will... tho i have no clue where this is going. i dont wanna see where it's going actually.

i dunno if his diet is totally gluten free... i guess it is.

docs keep running tests tho... they have this nasty habit to take so much blood out of him that he passes out. does anyone know what they're testing?

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me again...

he says he's getting a bit better. he can walk again! :)

i talked a lot with him and now he says he wont give up anymore.

d'you think prayers can do miracles?

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If he's actually going into anaphylactic shock that sounds like an allergy of some sort, not just celiac.

richard

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I have celiac and allergies, so he probably has both. It makes finding the culprits and eliminating them harder. I am glad he is starting to get better. Yes, I believe in prayer!!

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true... i think he's got an awful lot of allergies...

prayers are all that is left...

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I absolutely believe in prayers, and specific ones help. What is your friend's name and where does he live ? I would be glad to pray for answers and health for him. I know prayers made a tremendous difference for one of my boys that had very little hope for survival.

Lorraine

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I've PMed you... thanks

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    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
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