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I Need Help,thinking On Ordering Test Online.


driedupfish

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driedupfish Rookie

I went to the University of Chicago Celiac center annual free screening. My test result came back negative, however, I am still experiencing stomach discomfort from time to time. So I call them back to see if I can get another test, or a biopsy. They told me I should go to my primary doctor for another tests. I don't have a primary doctor, I call them a few times and doesn't seem like they want to give me another test. :(

What should I do? Does anyone know where I can get tested in the Chicago area?

I am thinking of ordering the test on directlabs, I order from this site before ( different tests), I don't think it's a scam.

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Anyone know which test(s) I should order?


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lizard00 Enthusiast

How do the tests work?

If you are able, I suggest finding a PCP to help you sort out any other issues you may be having, and run the full version of the celiac panel.

Besides, those tests still don't test for total IgA serum (IF they do, I didn't see where it was listed), and if you are IgA deficient you will be wasting your money. Which could be why you tested negative with the screening.

Mother of Jibril Enthusiast

Another reason to see a PCP is because the "stomach discomfort" could be something else... an ulcer, too much stomach acid (or not enough), stomach cancer, etc...

What led you to seek testing for celiac disease? Is there more besides your stomach symptoms?

ShayFL Enthusiast

I agree with everyone. You should see a PCP.

But, with regard to directlabs. I have been using them for over 3 years. They do not list EVERY test they offer. You have to call for some. And now it doenst mean that the ones not listed are expensive. They just dont have a complete listing online.

I had a complete Celiac panel through them which included TOTAL IgA. Call them.

driedupfish Rookie

Can someone suggest a physician. Doesn't seem like the one that I go to knows anything about Celiac. I live in the Chicago area by the way.

To shayFL, you mention that you had a complete celiac panel through directlabs. What is a complete celiac panel? Like what tests does it include?

Where else can I get a complete celiac panel?

  • 2 weeks later...
driedupfish Rookie

Any one know of a GI in chicago that can run blood work?

Mother of Jibril Enthusiast

A regular PCP can do the blood test. A GI would only be needed for an endoscopy.

A celiac panel should include anti-gliaden, EMA, TtG, and total IgA. The total IgA is very important... if the number is too low, you won't be able to get a positive test even if you do have celiac disease.


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missy'smom Collaborator

Chicago must have a celiac disease support group. You could call them and ask for recommendations. I got mine from our local support group members when I moved to this area. If they don't feel comfortable giving one in an official capacity over the phone, you could attend one of the meetings and just ask. People often do at ours.

Lisa Mentor
Can someone suggest a physician. Doesn't seem like the one that I go to knows anything about Celiac. I live in the Chicago area by the way.

To shayFL, you mention that you had a complete celiac panel through directlabs. What is a complete celiac panel? Like what tests does it include?

Where else can I get a complete celiac panel?

This is the Serological Panel to request from a doctor. Any GP can order these tests.

Antigliadin antibodies (AGA) both IrA and IgG

Antiendomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

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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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