Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Positive blood test, but told "probably not celiac"

sstar

Recommended Posts

sstar Rookie
sstar
Posted

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tessa25 Rising Star
tessa25
Posted

Perhaps get a copy of the test results and post the celiac panel results here along with the ranges.

 

Jmg Mentor
Jmg
Posted
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?

 

pavlovcat Apprentice
pavlovcat
Posted

If i'm remember correctly, there's about a 2% false positive rate for the blood tests.  The rate is higher among those with another autoimmune disorder.  

Ennis-TX Grand Master
Ennis-TX
Posted

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.

frieze Community Regular
frieze
Posted
On 5/30/2017 at 7:38 PM, Jmg said:

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

 

she is looking for the damage that would be expected...anemia etc.

Kkat Newbie
Kkat
Posted
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. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


sstar Rookie
sstar
Posted
  • Author
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!

sstar Rookie
sstar
Posted
  • Author

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. 

RMJ Mentor
RMJ
Posted

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.

ysali Rookie
ysali
Posted

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. 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,742
    • Most Online (within 30 mins)
      7,748
    MistyMoon
    Newest Member
    MistyMoon
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Theresa2407
      How Come Gluten Didnt Bother Me In Italy

      By Theresa2407 · Posted

      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Possible celiac - need advice

      By Scott Adams · Posted

      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Celiac or not??

      By Scott Adams · Posted

      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      How Come Gluten Didnt Bother Me In Italy

      By Scott Adams · Posted

      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.