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sstar

Positive blood test, but told "probably not celiac"

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Hi everyone. I saw a few different (wrong) specialists before finally linking my symptoms to that of celiac disease. When I saw the connections I made an appointment with anyone my clinic had as soon as possible (so I could stop eating gluten!) and it was a nurse practitioner. She seemed boggled but agreed to do the testing, she ran the celiac panel, a CBC and a CMP. I didn't speak to her directly but to another nurse at the practice who just read her notes that said "positive on the celiac test, but the other blood tests looked normal so probably not celiac. refer to GI."

My CBC was normal, but on the CMP my protein and creatinine were low. Upon consultation with Dr. Google, I saw that could be a marker for malabsorption (which would make sense if I have celiac?)

I am too poor to follow up with a GI right now, and am afraid to re-gluten myself for the scope test (like I'd have the cash for that anyhow hah) just for the possibility that they miss a bad spot and end up with a negative result. Also- I thought that false negatives were possible on the blood test, not false positives??

The photo upload won't work for me but this is the level of bloating I get, happens within a matter of minutes and slowly goes down over a few hours. Hurts like hell!!

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1 hour ago, sstar said:

"positive on the celiac test, but the other blood tests looked normal so probably not celiac. refer to GI."

That seems a little odd. A positive on the celiac test shouldn't need corroboration from other tests?

 

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Well I would say positive on the blood test would show you have it but we do call the endoscope and biopsy the golden standard and very good show for positive damage from the disease. The reference to GI is for the endoscope you need to keep eating gluten til you get that over with. But looks like you have the disease if you got the blood test positive.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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On 5/30/2017 at 2:39 PM, sstar said:

Hi everyone. I saw a few different (wrong) specialists before finally linking my symptoms to that of celiac disease. When I saw the connections I made an appointment with anyone my clinic had as soon as possible (so I could stop eating gluten!) and it was a nurse practitioner. She seemed boggled but agreed to do the testing, she ran the celiac panel, a CBC and a CMP. I didn't speak to her directly but to another nurse at the practice who just read her notes that said "positive on the celiac test, but the other blood tests looked normal so probably not celiac. refer to GI."

My CBC was normal, but on the CMP my protein and creatinine were low. Upon consultation with Dr. Google, I saw that could be a marker for malabsorption (which would make sense if I have celiac?)

I am too poor to follow up with a GI right now, and am afraid to re-gluten myself for the scope test (like I'd have the cash for that anyhow hah) just for the possibility that they miss a bad spot and end up with a negative result. Also- I thought that false negatives were possible on the blood test, not false positives??

The photo upload won't work for me but this is the level of bloating I get, happens within a matter of minutes and slowly goes down over a few hours. Hurts like hell!!

My stomach does exactly the same thing!! Makes me look preg until it goes down. I came on here looking at symptoms related to my nails being wavy - I know I have some malabsorption but wanted to figure out why - I'm planning on requesting thebsame panels you did and see what comes of it - some of them I have had before and had the same results you saw. But I never actually thought to request the celiac panel. I almost feel silly asking for it with the craze over gluten for everyone and their dog, but I think at very least I have a sensitivity to it. So we'll see - but your info and that picture were a big help. 

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5 hours ago, Kkat said:

My stomach does exactly the same thing!! Makes me look preg until it goes down. I came on here looking at symptoms related to my nails being wavy - I know I have some malabsorption but wanted to figure out why - I'm planning on requesting thebsame panels you did and see what comes of it - some of them I have had before and had the same results you saw. But I never actually thought to request the celiac panel. I almost feel silly asking for it with the craze over gluten for everyone and their dog, but I think at very least I have a sensitivity to it. So we'll see - but your info and that picture were a big help. 

I'm so glad I could help! It took me forever to link it to celiac. I searched and searched the internet for why this would be happening to me after being sent around to a few specialists. They thought maybe it was cysts or fibroids or even ovarian cancer, etc. Finally on one forum ONE comment said "my aunt gets that kind of belly sometimes but she has celiac disease" and that's how I got to this point. Doctors don't seem to know a whole lot about celiac from what I've seen, I'd just go in and basically demand the test. Make sure you load up on the gluten before getting tested! 

Just today I found a fitness instagram of a girl who had bad "bloat" problems and as I skimmed through she had a picture of a big belly and said a doctor had previously diagnosed her with celiac disease! Then she said 5 years later another doctor told her she didn't have it, so she has gone back to eating gluten thinking she was misdiagnosed. Docs need to get hip! Good luck on your testing!

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OK! Finally got a response from her but it took the nurse 3 entire days to call me back about my test results, and of course I was eating dinner and couldn't pick up.. she left me a voicemail that said she doesn't think I'm celiac because my blood tests didn't show anemia. Told me to follow up with the GI and keep eating gluten :\

She is out of the office the entire next week but is in contact "by message" but I can't even leave a message at the office because they are closed now.. ugh! now I need to wait until Monday to even leave a message for them to ask her. 

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One does not need to have anemia to have celiac!  It sounds like you've gone gluten free?  Perhaps they would be willing to retest you in six months to see if the antibody level goes down on a gluten free diet.  Be sure to use the same lab for the retest so the comparison is valid.

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This definitely seems odd to me. My scopes/biopsies all came back clear (two endoscopies, one capsule endoscope, and colonoscopy) but my bloodwork came back positive for celiac so my doctor put me on a gluten free diet immediately. Everything else in my labs was fine too, no anemia, none of that, just some elevated inflammation markers. 

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