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Spru Count High


dragonmom

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dragonmom Apprentice

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

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

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

coronalime Rookie

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

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

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

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

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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    • trents
      One small study found that 50% of celiacs react to the dairy protein "casein" like they do to gluten. It is also common for celiacs to be lactose (the sugar in milk) intolerant, though that often disappears in time as the villi heal. About 10% of celiacs react to the oat protein "avenin" like they do gluten.
    • K6315
      Thank you so much Trents (Scott?)! I have started working with a dietitian and did a deep research dive as soon as I got the diagnosis. I am aware of what you mentioned in the first two paragraphs, and was not aware of anything in the third, so I am grateful for that information, and will talk to the dietitian about that. I think I was most interested in the withdrawal process - it gives me hope that, although I have felt unwell recently, I just need to be patient (not a strong suit). I have printed the article you sent and will look at it more closely. Thanks again!
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      I really like Thorne!  I've researched thier products.  Thank you so much.
    • trents
      Welcome to the forum, @K6315! Gluten withdrawal typically lasts for a period of a few weeks. But there is a real learning curve involved in actually attaining to a gluten free dietary state. Much more is involved than just cutting out major sources of gluten such as bread and pasta. It's all the places that gluten is hidden in the food supply that is difficult to ferret out, like soy sauce and canned tomato soup, canned chili and canned pork n' beans, some "lite" pancake syrups, potato salad, flavorings, etc., etc. Gluten-containing grain products are hidden through alternate terminology and found in places you would never expect.  There is also "cross contamination" where naturally gluten free foods come into contact with gluten-containing grains during farming, transportation, storage and manufacturing processes. Then there is the issue of "cross reactivity" whereby you may be having gluten-like reaction to food proteins whose structure is similar to gluten. Chief among these are dairy, oats (even gluten-free oats), soy, corn and eggs. I am including this article that you might find helpful:   
    • K6315
      Prior to being diagnosed, I had a gluten heavy diet. I stopped all gluten exactly a week ago and have continued to feel sick in the ways I did prior to going gluten free - primarily on and off nausea, brain fog, and fatigue. Wondering if this is normal and, if so, how long can I expect to feel this way?
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