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New And Kinda Confused

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Posted 31 January 2013 - 07:24 AM

I went to the doctor yesterday because I just could not stand how thirsty I am all the time any more. The nurse checked my sugar first thing, and it was fine. Then the doctor came in and started asking me some questions.

I told her I cannot get enough water (15-18 8 oz glasses a day and I am still thirsty). Of course, I have to go to the bathroom all the time as a result. We discussed my joint pain--thumb, elbow, shoulder and hip. I have been checked for RA, lupus, gout and nothing shows. Bone scans on my thumb (which is the worst) are fine. She asked about any digestive issues, and I told her pasta kills my stomach (diarrhea), that usually my bms are soft and greasy, and that I try to avoid pasta and usually bread because they make it worse.

But, by and large, the joint pain, fatigue, and foggy memory are worse concerns for me.

The first thing she said was it sounds like celiac. She is referring me for blood work, mentioned something about a biopsy, and so here I am--doing my homework!

I read that avoiding gluten can throw off testing. I can't say I have been gluten free, but I don't eat a high level of it, either. My stomach just does better when I don't have the pasta and such.

It felt so good to have someone validate what I was feeling, as I had started to think of myself as a bit of a hypochondriac. Part of me is worried that any testing will be negative and I will go back to feeling like it is all in my head!

Does this sound typical of celiac?
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Posted 31 January 2013 - 10:58 AM

Eh, if it does, then you probably have NCGI (non-celiac gluten intolegence). There is no testing for that outside of a gluten free trial I belive.

It could very well be. Pasta, and i was (correction still am) a pasta fanatic. The wheaty stuff would set my stomach off and fealt like lead. It did eventually get worse too.

Now i eat a corn/quinoa mix pasta and i'm happy :D

At any rate, you're probably getting enough in ya. Generally its reccommended for those who are doing a trial to do 1-2 slices of bread per day. But i think you can also sub that with other gltueny things.
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Posted 31 January 2013 - 02:15 PM

Congratulations on finding a celiac savvy doctor. The symptoms you describe are associated with celiac disease and, as Wolfie mentions, gluten intolerance in general. Tlhere is no way of knowing without testing which it is. It is true that low levels of gluten eating can affect test results because the tests are measuring the antibodies your body is making to gluten, hence: no gluten, no antibodies. :) In fact, this is the way to test for compliance with a gluten free diet - the absence of antibodies. I don't know how much gluten you are eating but eat as much as you can manage until your testing.

Welcome to the board and let us know how we can help.
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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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Posted 31 January 2013 - 07:10 PM

Thank you for the support and advice. I go in for blood tests next week, so I guess I will up my intake until then. And I will read up on both celiac and gluten intollerence!
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Posted 31 January 2013 - 07:15 PM

I met a celiac once whose only symptom was severe throat and mouth ulcers... celiac can affect almost anything, even brain and skin.

Good luck with the testing. I hope you get some clear and definitive results. If you are unsure of what the results mean, bring them here. There are a few veterens around here with a wealth of information. :)

And good luck with the gluten consumption... perhaps eat it in the evening before bed to minimize symptoms affecting your day. Best wishes.
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