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Could It Still Be Celiac Or Gluten Sensitivity?


Lovelivedance

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Lovelivedance Newbie

Okay, here's my story. Ever since the age of 7 I have been experiencing stomach pain after meals. In the last few years the stomach pains have been going away but I still have many symptoms such as headaches,skin rashes,dizziness and constipation. I went to the doctor for my problems and they told me to go off dairy and tested me for celiac among other things.The next day they called to say all my blood work was fine and that I don't have celiac ( I find this strange because doesn't the blood work take more than 1 day) Anyways so going off dairy helped a bit but I still have many symptoms. The reason I'm still thinking gluten is the culprit is because my mom also has many symptoms such as psoriasis,keratosis Polaris, fatigue and sleep apnea. I still live with my mom and she thinks that gluten sensitivity is a myth and won't let me go off of gluten to see if I have a sensitivity. Anyways so what should I do and is it possible I still have celiac or even a gluten sensitivity?


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nvsmom Community Regular

Can you get a hold of what tests were done?  Some doctors run the old tests, misinterpret the results, or only run one test when more should be done.  You do have some symptoms that could be attributed to celiac disease or NCGS (non-celiac gluten sensitivity) so it is worth rechecking.

 

If you think it could be NCGS, go gluten-free for a few months and documents your symptoms.  No one needs a doctor's prescription to go gluten-free. Gluten has no nutritional value anyways, and is not heavily eaten in other parts of the world... it is just convenient and tastes good.  ;)

user001 Contributor

I do think the test does take more than one day to run and interpret. I was told 4 days is about the shortest. So that is strange. I have heard that many people have the test run several times and sometimes it takes a few times to actually come back positive. I was young (17) when I first started to realize something was wrong, like yourself. I wish I knew about celiac disease then, because I am about to turn 30 and I have been through a lifetime of hurt because of this disease. I was always misunderstood by my parents because of the way I ate and felt all the time. It is certainly difficult. You are very lucky to have the resources to help you determine what tests the doctors should run, i wish i had the resources at a young age because I would have asked the Dr to run the tests sooner and saved myself and my health.

Lovelivedance Newbie

Thank you both for you're help

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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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