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14 Weeks gluten-free And No Significant Change Yet...Is This Normal?


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#1 jennifert

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Posted 23 February 2010 - 08:09 AM

I have done this diet strickt for 14 weeks now and notice little if any change. I am wondering if anyone else has had similar experiences. Most people I have heard of have some change in a couple of weeks, even if minor...

My biopsies for the last 5 years or so have always been negative for celiac but my GI wanted me to try Gluten Free becuase of my symtpoms and because the anti-gliadin test was positve many years ago. However, the TTG test was recently negative, as well as biopsy- and i hadn't yet started the diet. I want to give this up, but I wanted to see others experinces first and I wanted to give it a long enough trial.

Just for back ground- I had lost 17 pds in last year, developed neurological symptoms, skin rashes, joint issues, etc...after 14 weeks, still have all those things, and only gained 1 pound and I think its becuase I am eating so much meat now! :)

Any feedback would be appreciated.
jennifer
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#2 tarnalberry

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Posted 23 February 2010 - 08:32 AM

There is a huge difference between "no significant change" and "no change at all".
Two questions:
1. Are you certain you are completely gluten free with no contamination? New wood cooking things (cutting boards, spoons, etc.), new colander, no shared scratched non-stick pans, no shared condiments, no hidden gluten in food items (soy sauce, etc.) or other items (hand lotion), no oats, and no eating out?
2. Are you noticing ANY changes? Not just in symptoms you started with, but in any other area?
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#3 iamgf

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Posted 23 February 2010 - 10:06 AM

You are absolutely right to stay on the diet. I am sure your GI has told you, but you can have blood tests and biopsy's come back negative for Celiac, and still have Celiac.

If Celiac is the issue, 1st) your body must heal 2nd) your body can then utilize the nutrients you feed it and 3rd) only then can your WHOLE body begin to experience relief. It is slow and gradual healing, with slow and gradual relief. Give you body at least 14-months for this process.

Have you had your thyroid checked?
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#4 jennifert

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Posted 24 February 2010 - 09:16 AM

Hi Tiffany, I have been super strict- following it to a T and no eating out- no lotions, no new cutting boards etc. No sauces ever- I am eating chicken and white rice and steamed veggies, and potatoes and gluten free pasta- and more veggies- I never add any sauces to anything- no soy sauce- no msg- no anything... I have not cheated even once. I follow the food list on this web site of the safe ingredients and cook at home.

And as far as the change- I can't say that I really feel anything- at first I thought maybe my skin may have gotten slightly more clear- but my spasms, bloating, joint pains, rashes, neurological issues, etc- no better. I dont' even feel like I have more energy like some friends have told me when they go gluten free. I would have thought that if I had it bad enough to cause neurological symptoms that it would have showed on biopsy one of these times.?

I did read on this site about the genetic testing and I think I am going to ask my dr about that today...any experience with that?

In my gut, no pun intended, I just feel I should have felt more by now...
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#5 jennifert

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Posted 24 February 2010 - 09:25 AM

Iamgf: I have had my thyroid checked a million times, and they did a spinal tap to check for MS- they put me through the ringer! My GI told me he did not think I needed to continue because I had not gained any weight but I still kept on a little longer cause I wanted to give it a good trial. My rheumatologist said it can often take longer- but when he did the colonoscopy and endoscopy he said the villi were intact and no damage... so I feel so torn about what to do.
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#6 tarnalberry

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Posted 24 February 2010 - 10:36 AM

Hi Tiffany, I have been super strict- following it to a T and no eating out- no lotions, no new cutting boards etc. No sauces ever- I am eating chicken and white rice and steamed veggies, and potatoes and gluten free pasta- and more veggies- I never add any sauces to anything- no soy sauce- no msg- no anything... I have not cheated even once. I follow the food list on this web site of the safe ingredients and cook at home.

And as far as the change- I can't say that I really feel anything- at first I thought maybe my skin may have gotten slightly more clear- but my spasms, bloating, joint pains, rashes, neurological issues, etc- no better. I dont' even feel like I have more energy like some friends have told me when they go gluten free. I would have thought that if I had it bad enough to cause neurological symptoms that it would have showed on biopsy one of these times.?

I did read on this site about the genetic testing and I think I am going to ask my dr about that today...any experience with that?

In my gut, no pun intended, I just feel I should have felt more by now...


That's fair - 3 months on a strict gluten-free diet generally ought to show *some* change (though not necessarily complete relief, of course).
I'm not a huge fan of genetic testing. It gives you a clue, but it's like a riddle - the clue is hard to gauge for its real value.
If you've got the patience for it - and it sounds like you do - I would go with something like an elimination diet to see if something else is bothering you. There are LOTS of ways to do an elimination diet, and you don't have to go hard-core right away if you don't want to. In your shoes (and I'm not saying this is the right answer, just what I would do), I would keep gluten out of my diet, and eliminate the next major allergen you suspect. I'd probably go with dairy, myself, but it'd depend on what you generally eat. Leave that out (completely) for a month, see if there are any changes. If none, move to the next (I'd probably go to soy) for another month. And so on.
Yes, it's an experiment, but it's under your control and you can take it any direction you want.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#7 jennifert

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Posted 24 February 2010 - 11:07 AM

thanks for your feedback Tiffany- Are genetic tests not accuate? I just figured if both of the genetic tests for it came out negative it would at least exclude it more... maybe I'm wrong...

As far as elimination diets, I don't use soy..I guess the only thing would be dairy, but I dont' think that would cause the symptoms I am having such as the weight loss, stomache spasms and neurological isues. Maybe I am wrong...but I don't have diarreah- more on the constipated side, after some dairy. I could see if it was the opposite, since that would lead to weight loss. I am going to the doctor today to hopefully get a little more direction.

thanks again for your help...
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