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Pre Dx-Testing In Progress


Dnnysm

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Dnnysm Newbie

So I've been complaining of the same issues for as long as I can remember: upset stomach, naseau, bowel moments that are never consistent usually very very soft, headaches day in and day out and numb to painful arms hands and feet and as a child told growing pains, as an adult I've just confused all doctors. Recently I've lived some very stressful events that have lasted for months and have been dx'd as having anxiety.

Well the symptoms will leave for a bit then come back and they always come back hard so I went to the doctors again.

His resident was the one who asked if I have ever been checked for celiac disease and here comes the testing again (first time for this of course but all this gets so tiring.)

I've already had quite the blood test with multiple things checked off but unfortunately I didn't really read what (as a doctors secretary I'm disappointed in myself) but results have not yet been discussed. Tomorrow I am going for an esophagus, stomach and Duodenum fluoroscopy test which I'm dreading as I always struggle with fluroscopy. I'm also currently awaiting an appointment with a GI which I hope isnt too long of a wait.

I really am struggling to eat as I normally do as I just wanna say f it and eat gluten free if it means I could possibly feel better but I know I should hold off.

I've been researching it intently and taking down tips, I am now keeping a food guide and poop guide as per the suggestion on my GP so the gi has info to go on. Any tips in the mean time to numb the stomach ache during this process or even calm it a bit or really anything! I'm just such a zombie these days with symptoms all over the board!

I really do believe it's this and with or without a positive Dx I will attempt this lifestyle since all my ailments finally fit, and my poor mom has closure on my nail nutrition hospitalizations as a child even though I was a well fed healthy eater as a kid! Haha!

Thanks guys! Look forward to sticking around this board!

Dianna!


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rosetapper23 Explorer

I also had ALL those symptoms (and more) before being diagnosed with celiac. I would BET that you either have celiac or gluten sensitivity. Hopefully, the testing will be over soon....but if your tests come out negative, I hope you'll still consider going gluten free. The tests are notoriously inaccurate....and you could be suffering from gluten sensitivity rather than celiac.

You're definitely on the right track!

WitsEnd Rookie

I also have had all those symptoms and more. Im still in the middle of testing but it looks like I have a gluten intolerance.

Good luck with your tests! I know they are scary and annoying, but hopefully you'll get some answers.

Dnnysm Newbie

Just thought I'd update! Today was the first day I ever succesfully drank the disgusting barium and completed a fluoroscope test without throwing up. Only a ct, an appointment with a gi and what my gp assumes will be a biopsy left! What a process! I'm really itching to get gluten free. The quicker this process is over the sooner I can start to try and feel better! My family is very support on me trying this out regardless of test results!

Dnnysm Newbie

I`m not sure if there is a forum board all about bloodwork- i may be missing it but I recieved a call from my GP today telling me that my bloodwork showed elevated white blood cell counts- I don`t have specifics (I`ll be asking for a copy when I go see him monday) and was asked to repeat my labwork. Is this something normal or seen in celiacs? I honestly have no clue.

kareng Grand Master

I`m not sure if there is a forum board all about bloodwork- i may be missing it but I recieved a call from my GP today telling me that my bloodwork showed elevated white blood cell counts- I don`t have specifics (I`ll be asking for a copy when I go see him monday) and was asked to repeat my labwork. Is this something normal or seen in celiacs? I honestly have no clue.

It's fine to continue on with your thread.

Sounds like you didn't have the Celiac blood teast run? I would ask to get those done.

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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
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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