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leenabeana

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leenabeana Newbie

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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mushroom Proficient

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.

lizard00 Enthusiast

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!

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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