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Waiting For My Test Results...


Jeevie

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Jeevie Newbie

I am trying to patiently wait for my TTG results. I have been sick for several years. I have had iron deficiency that hasn't responded to supplements or iron iv, joint pain, fatigue, bloating, unexplained weight gain, CRP is high at 28, negative RF, ANA, ENA. My doctor told me he doesn't know what's wrong with me and to just live with it. In my opinion, it seems like doctors just don't want to be the one diagnosing a patient and prefer other doctors do it. I have paid for a lot of tests out of pocket and went to the USA to get them done as in Canada, it takes forever to see a specialist (sometimes up to 8 or 9 months) and family doctors are limited in what tests they can order. 

 

I went to a walk in clinic due to joint pain being so bad. The doctor immediately gave me a requisition to be tested for Celiac. Researching online, I didn't realize that celiac can mimic other autoimmune diseases. But its hard waiting for the test results. 


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cyclinglady Grand Master

I hear you! I am waiting for some glucose tests! I am hoping that I have improved greatly!

Anemia was really my only symptom when I went for a routine colonoscopy consult. Doc suggested celiac disease. I was shocked because my hubby has been gluten-free for 13 years. What are the odds?

Docs never bothered about the anemia since I had a genetic anemia already and I was menstruating! Anemia resolved with supplements for good in about six months. Glad to be able to talk without gasping!

Let us know where you stand.

nvsmom Community Regular

Waiting really is awful! Going gluten-free was almost easier than not knowing. Hang in there.

I have a lot of joint pain too. There are a fair number of us that experienced joint pain with this disease. It's good that you were tested. Be aware though, that the tTG IgA can miss 5-25% of all celiacs - it's not a perfect test. It is often a good idea to get all the tests done so you do not get missed (DGP IgA, DGP IgG, EMA IgA, tTG IgG, total serum IgA control test, and possibly the older AGA IgA and AGA IgG).

If the test comes back negative, you might want to pursue more testing, including the endoscopic biopsy. If you can't get any more tests done, then go gluten-free for 6 months to a year to see if it helps. Joint pain is often one of the slower symptoms to reverse. You may need to give it a year or three.

Best wishes. Let us know the results!

user001 Contributor

Waiting is horrible, but finally having answers is great! Good luck to you.

 

Joint pain is terrible. I have very bad arthritis in many places, especially my lower back and that will unfortunately never be reversible but I do have more good days than bad days recently. Today it rained in NJ, so a pretty bad day.

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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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