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dragonmom

By dragonmom
in Coping with Celiac Disease

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dragonmom Apprentice
dragonmom
Posted

Since March 2004 when I was diagnosed with Celiac I have been, to the best of my knowledge, gluten free. My blood tests keep coming back high in spru levels. I am feeling - I don,t know weird. I lost 60 pounds really fast before I knew what was happening-now I have gained it all back. That would lead me to believe that my body was functioning(for my weird body) normally. I read lables - just lost...... :huh:

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Guhlia Rising Star
Guhlia
Posted

It sounds like gluten is sneaking in somewhere... Either that or you have another intolerance that is causing an autoimmune reaction like casein sensitivity...

daffadilly Apprentice
daffadilly
Posted

Are you eating a lot of gluten-free breads and crackers, cookies and cakes?

coronalime Rookie
coronalime
Posted

I just had the same thing! I started Enbrel which suppreses your immune system for arthritis. They did a bunch of tests and I have been gluten free since like 2003 ish. Well he flat out told me I was not doing well on my diet. He said that if it does not say gluten free or you have not researched the product and know its gluten free then it does not go in or on the body. He said you must go to extremes you cant just read a label. I am sitting here today just reeling from this. I just assumed since my bowel movements have gotten better then I was coping fine. but I am wrong..way wrong. Good luck to you. I have to go back to the drawing board, and I may join a group here in town..Start buckling down and becoming one of those crazy gluten free people :)

daffadilly Apprentice
daffadilly
Posted

welcome to the crazy bunch :lol::lol:

I highly recommend a local support group, there is invaluable current information there...

Our group in Houston is awesome, but I have heard of some smaller groups that uh, might be a little radical even for me, if that is believable :P

happygirl Collaborator
happygirl
Posted

Are you eating out? Chances are, if you are eating out, even at gluten-free places, you have a high chance of cross contamination. I didn't start to get really better til I stopped eating out.

Another option--refractory Celiac. But, until your diet goes "crazy gluten free" (and girl, do I understand!) I would not wory about that quite yet.

Let us know what we can do to help. I bet we can come up with some culprits.

xoxo

dragonmom Apprentice
dragonmom
Posted
  • Author

We rarely eat out, I make gluten-free meals- they go out for Italian when I'm working late. Could working in a grocery store that has a bakery make any difference? I do eat a lot of cheese. I have gained so much weight that I pretty much avoid gluten-free cookies,bread etc. I have also been reading about the chocolate cross contamination- I do like chocolate :) I'm going to try to limit my dairy-but does that make the spru test higher? Thanks for all the replies.

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happygirl Collaborator
happygirl
Posted

no-the blood panel is specific to celiac antibodies.

I would try to "buckle" down (if possible)....and then have your bloodwork re-done. See how that is. Depending on that, you might want to do an endoscopy with multiple biopsies to check the status of your villi (and possibly refractory celiac)

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