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
      132,128
    • Most Online (within 30 mins)
      7,748
    Steve715
    Newest Member
    Steve715
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Just wanted to add that checking B12 and Vitamin D only is not going to give an accurate picture of vitamin deficiencies.   B12 Cobalamine needs the seven other B vitamins to work properly.   You can have vitamin deficiency symptoms before the B12 blood level changes to show deficiency.  You can have "normal" B12, but have deficiencies in other B vitamins like Thiamine and Niacin, for which there are no accurate tests. Take a B Complex supplement with all the B vitamins.  Take additional Thiamine B 1 in the form Benfotiamine which has been shown to promote intestinal healing.  Thiamine Mononitrate found in most vitamin supplements is not easy for the body to utilize.  What makes thiamine mononitrate not break down on the shelf also makes it hard for the body to absorb and utilize.  Thiamine and Niacin B 3 deficiency symptoms include anxiety, depression and irritability.  The brain uses more Thiamine than other organs.  Take the B Complex and Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and look for health improvements in the following weeks.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Hello, @rei.b, Ehlers Danlos syndrome and Celiac Disease can occur together in genetically predisposed individuals.  Losing ones gallbladder is common with celiac disease. I'm glad Naltrexone is helping with your pain.  Naltrexone is known to suppress tTg IgA and tTg IgG production, so it's not surprising that only your DGP IgG and DGP IgA are high.   Have you tried the Autoimmune Protocol diet designed by Dr. Sarah Ballantyne, a Celiac herself?  The AIP diet helps lower inflammation and promotes intestinal healing.   The AIP diet is a Paleo diet that eliminates foods that can cause intestinal inflammation until you heal on the inside, then more foods can be added back in.  The low histamine AIP diet will help reduce inflammation further.   Histamine is released as part of the immune response in celiac disease.  Foods also contain various amounts of histamine or provoke histamine release.  Lowering the amount of histamine from foods helps.  The body, with help from B vitamins, can clear histamine, but if more histamine is consumed than can be cleared, you can stay in an inflammatory state for a long time. Cutting out high histamine foods is beneficial.  Omit night shades which contain alkaloids that add to leaky gut syndrome found with celiac disease.  Night shades include tomatoes, peppers including bell peppers, potatoes and eggplants.  Processed foods like sausages and gluten-free processed products are high in histamines.  All Grains are removed from the diet because they are inflammatory and provoke histamine release. Blood tests for deficiencies in B vitamins are notoriously inaccurate.  You can have vitamin deficiency symptoms before blood levels show a deficiency.  Blood levels do not accurately measure the quantity of B vitamins stored inside the cells where they are utilized.  The brain will order stored vitamins to be released from organs into the blood stream to keep the brain and heart supplied while deficiency occurs inside organs, like the gallbladder.  Gall bladder dysfunction is caused by a deficiency in Thiamine Vitamin B 1 and other B vitamins.   The eight essential B vitamins are water soluble and easily lost with diarrhea and constipation, and the malabsorption and inflammation that occurs with celiac disease.  Because they are water soluble, the body can easily excrete any excess B vitamins in urine.  The best way to see if you are deficient is to take a B Complex and Thiamine in the form Benfotiamine and look for health improvements in the following weeks.  Most B Complex supplements contain Thiamine Mononitrate which is not bioavailable.  The body has a difficult time utilizing thiamine mononitrate because it doesn't break down easily.  Benfotiamine has been shown to promote intestinal healing.   Remember your intestines are in a damaged, permeable state.  Treat them tenderly, like you would a baby until they heal.  You wouldn't feed a baby spicy bell peppers and hard to digest corn and nuts.  Change your diet so your intestines can heal.   I use a combination of B12 Cobalamine, B 6 Pyridoxine, and B1 Benfotiamine for pain.  These three B vitamins have analgesic properties.  They relieve pain better than other otc pain relievers. 
    • Mari
      My only proof

      By Mari · Posted

    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Sorry, I think I got you mixed up with another poster.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I hadn't been eating gluten free before having the antibody test done. I started eating gluten free after having the test done because the gastro PA told me to eat gluten-free for 6 months. I'm now 3 months in.
×
×
  • 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.