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I haven't yet been diagnosed with Celiac's, but think my symptoms definitely point to it. For many years I've had sharp stomach pains that wake me at night. For some reason I thought they were normal and once I realized they weren't talked to my doctor at the time about them. He had me start taking metamucil as I wasn't having very regular bowel movements. I started experiencing a lot of fatigue, which they took blood work and had me see a pulmonologist to see if I had a sleep disorder. Came back anemic, so they started me on Iron, and thought I had restless leg syndrome, which I won't even go into the horrors of all the medications they circulated me through with that, all to no avail. I had pretty much given up and the iron helped with the fatigue, so I let it be... until the stomach pains started getting worse and I started seeing blood in my stool. Was told to have a colonoscopy, and get off the iron (which I'd been taking for probably a good year and a half). Colonoscopy came out fine, but the stomach pains were still happening, so I went to the doctor last Friday. He thinks it could be Celiac's and if not then he doesn't know what it could be, but is confident that it isn't anything life threatening. I'm still waiting to hear what my bloodwork results were and I'm so nervous about it. The more I read about the disease the more my problems make sense.

I guess I'm just scared the test will come back negative and I'm stuck still wondering what is wrong. If it comes back negative should I still try the gluten free diet and just see if it helps the stomach pain?

I just want a solution, or at least an answer as to why all this is happening. Thanks for letting me vent!

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Hi Leenabeana, and welcome to the forum.

The blood tests are not foolproof and give a fairly high false negative rate. You could always ask for an endoscopy with biopsy of the small intestine, which is considered to be the so-called "gold standard" of diagnosis, but he may not want to do this if the bloodwork is negative.

But you can certainly try the gluten free diet on your own. You don't need a doctor's prescription or permission for that and there are many of us here that did just that with amazing results. While a diagnosis is good to have I don't think it's worth making yourself more ill for, just to get a positive test. Eliminating gluten, and then doing a gluten challenge is regarded by many doctors as diagnostic in and of itself if your symptoms go away off gluten, and return when you start eating it again.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

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

Celiac.com - Celiac Disease Board Moderator

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Hi and welcome to the forum! :)

As the previous poster said, you can always try the diet if your bloodwork comes back inconclusive. Try for the endoscopy either way, because often, that will reveal celiac damage when bloodwork comes back negative.

I hope you get some answers soon so you can start feeling better!


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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