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Okay, Now I Am Scared....

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Posted 29 July 2004 - 05:47 AM

Don't have time to read all the posts on this one but let me re-emphasize.

True refractory sprue is very, very rare. Almost all people who think they have refractory sprue are either still eating some gluten or they have bacterial overgrowth. You must get ALL gluten out of your diet and you must take some probiotics. Then go from there.

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Posted 29 July 2004 - 08:37 AM

Karen, I have celiac disease and I am also dairy intolerant. After 4 months of being on the gluten free diet I was still having "permenant " diarrhea. Nothing seemed to want to stay in my system for a long period of time. Sometimes the food I ate was almost instantly out. It was awful.
I was weak, tired, annoyed, underweight, and very frustrated.

I went back to my GI specialist and he said I should be 100% dairy free and 100%gluten free of coarse. Then he suggested that I may also have IBS (Irritable bowel syndrome) in addition to Celiac Disease. (Oh joy). <_<

He started me on a medication called Modulon and it has worked wonders! I actually had almost a week of no diarrhea!

I have learned the hard way that the drug doesn't work well if you have a gluten accident.

But as long as there was no gluten in me I was fine and felt wonderful, better that I had in months!

Just thought you'd be interested
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004



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Posted 29 July 2004 - 02:11 PM

Hi Karen,

My mother said the same thing to me the other day...I don't know whether to pick out the crumbs or invest in a new toaster... 

New toaster......it's not too expensive, but it'll make a big difference.

I know you mentioned that you drink alot of kool aid, and wanted to cut your sugar intake. Crystal light if gluten free, and sugar free. And it comes in a variety of flavors, that might be a good alternative. Also, check out those Toronto gluten-free stores from the Toronto section for gluten-free soy sauce.

Crystal Light is great....I called Kraft awhile ago and it's fine. I don't know if it's sugar free, but it's gluten-free and really good. I drink it all the time. I like the strawberry kiwi the most, but their lemonade and pink lemonade are good also. You might want to check the sugar, but it's gluten-free and I really like it.
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Posted 29 July 2004 - 08:12 PM

Thanks celiac3270--I'll opt for the new toaster!!!
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Posted 29 July 2004 - 09:39 PM


I get that burning/gnawing feeling in my upper intestines from dairy. I am dairy free now since November 2003, and gluten free since January 2004. The only thing that made going back on gluten for a gluten challenge (Nov-Jan) possible was being dairy free. I get horrible cramping, gas and diarrhea from dairy, and it is the casein and NOT lactose that causes it for me. My three kids also have problems with casein.

We have found subtitutes for some of the dairy products, but not all. A lot of the non-dairy products are not actually dairy free! You have to read labels and look for things like the obvious milk, milk protein, powdered milk, casein, lactose, but also for the less obvious like whey, sodium caseinate, any other type of caseinate, and I'm sure there are some I am forgetting.

It is much harder to be gluten AND dairy free, but it is so worth it. I would have been like you and wondered if the tests were wrong or if it was refactory sprue, since if I had not done the Enterolab tests that told me to stay off dairy I would have continued to have tons of intestinal complaints. I am glad to be dairy free.

Some of our favorite gluten-free/cf foods are:

Mocha Mix Non-Dairy Frozen Dessert; Mocha Almond Fudge and Neopolitan
Philly Swirl; Stix and Cups
Nucoa Margarine
Blue Diamond Almond Breeze Chocolate Beverage
Gluten Solutions Chocolate Mint Protein Bars

God bless,
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children


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Posted 31 July 2004 - 07:53 AM

Hi Smith,

Thank you so much for the suggestion of Crystal Light. I purchased it and it tastes very good!!! I can even make my slushies out of it (I have a slushy machine because I just LOVE them - I usually used Kool-Aid with it but now I can use the Crystal Light instead)..... Thanks for the suggestion!

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positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
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"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

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