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Endoscope Showed A Lot Of Sprue...despite Being gluten-free

sydneysmommy

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sydneysmommy Apprentice
sydneysmommy
Posted

I was diagnosed in 2001. And I am really frustrated as I had been having some more problems [getting full very fast etc] so my doc did an endoscope AND colonoscopy [had some other stupid issues as well] and come to find out... i have TONS of sprue active in the upper intestine!!!!

HOW!!?????

i am soooooooooooooooo gluten free it isnt even funny.

WHAT do i do? where do i go? do i start over? do i have to just go back to SCD diet? Am i the only one this has happened to? I am SO frustrated!

What is getting by me in food labels? Will I NEVER get to go to a restaurant again? And to make matters WORSE... gluten free products [if you want to gauruntee the saftey of what you eat] are SO DANG EXPENSIVE!

im really at a loss.

:(

Sara

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Ursa Major Collaborator
Ursa Major
Posted

Sara, that must be very frustrating, especially if you know you are following the gluten-free diet.

Is your house gluten-free? Is there a chance of cross-contamination? Have you checked all your medicines (if you are taking any) and vitamins to make sure they are gluten-free?

Are you sharing a toaster used for gluten bread with somebody else? Or a colander for both kinds of pasta?

Do you use shampoo/conditioner, soap, lotion etc. that is gluten-free? It is possible to get glutened from those.

There can be reasons for damaged villi other than celiac disease. Dairy and soy can cause villi damage as well, and there are other possibilities you need to research and explore.

I hope you figure it out.

Sweetfudge Community Regular
Sweetfudge
Posted

how frustrating. i hope you can figure out what's bothering you. i would try somewhat of an elimination diet, and cut out big suspects - dairy, soy, corn, etc. i've tried to limit my dairy intake, and that's helped. i take lactaid when i can't resist. it's very hard to feel like you have to cut more stuff out though :( hang in there!

Guest j_mommy
Guest j_mommy
Posted

What about refractory sprue????

Do you have symptoms?

I would also keep a journal of what you are eating to help identify anything that you may be missing!

Good Luck!

Ursa Major Collaborator
Ursa Major
Posted
What about refractory sprue????

Do you have symptoms?

I would also keep a journal of what you are eating to help identify anything that you may be missing!

Good Luck!

Refractory sprue! (slapping my forehead) That might unfortunately be the best explanation (which isn't too reassuring, of course).

Did you have another blood test? If it comes out negative, indicating that you are following a strict gluten-free diet along with extensive damage still happening in your intestines, that would likely mean refractory sprue.

Hopefully it is just something you missed in your diet.

gramma bea Newbie
gramma bea
Posted
I was diagnosed in 2001. And I am really frustrated as I had been having some more problems [getting full very fast etc] so my doc did an endoscope AND colonoscopy [had some other stupid issues as well] and come to find out... i have TONS of sprue active in the upper intestine!!!!

HOW!!?????

i am soooooooooooooooo gluten free it isnt even funny.

WHAT do i do? where do i go? do i start over? do i have to just go back to SCD diet? Am i the only one this has happened to? I am SO frustrated!

What is getting by me in food labels? Will I NEVER get to go to a restaurant again? And to make matters WORSE... gluten free products [if you want to gauruntee the saftey of what you eat] are SO DANG EXPENSIVE!

im really at a loss.

:(

Sara

gramma bea Newbie
gramma bea
Posted

Unfortunately, I experienced the same thing. Mine turned out to be dairy and soy that was also doing damage. :angry: Now I treat those two offenders just like gluten, and have eliminated them completely from my diet. Its not easy, but so necessary to completely heal.

Good luck! Gramma Bea

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