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

Blood Test Results High Mcv


confused123

Recommended Posts

confused123 Rookie

Hi everyone!

I am new here! Have been reading a lot of posts and this forum has been super helpful!

Have had stomach issues for a very long time. This year some symptoms are more prominent ("fluffy stools", abdominal pain) Finally went to the GI who suggested based on my symptoms that I could have an ulcer, H pylori or Celiac Disease. He asked about my kids and if they had allergies... my oldest had very bad allergies and we had to use a nebulizer for him to stop coughing. He outgrew it. My youngest has eczema on his shins and elbows. He said he really thought this was gluten related and if I tested positive I should have my kids tested as well. He gave me Prilosec to take for 2 weeks.

He ordered the full Celiac Panel Blood Test, tested for H Pylori and some other things.

Just got a call from the nurse and said everything was normal, no signs of Celiac. H Pylori negative. I did have enlarged red blood cells (MCV) and now have to get my B-12 and folate checked. I am a vegan so it makes sense I could have a B-12 deficiency.

My question, what about my stomach? Why does it still hurt and why do I have the "fluffy" stools? Even with a B-12 deficiency these symptoms don't make much sense!

Anyone else have gone through this? Thank you so much in advance!!!!

:unsure:


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hi, and welcome.

Just because you are not celiac, does not mean that you are able to tolerate gluten. And there can be false negatives on the blood test. If your B-12 and folate are low, indicating malabsorption (have him check your Vitamin D too) do you think you could talk him into doing a biopsy? Also, what celiac tests were run and what were the results and ranges??

I was personally never tested at all, but had high MCV and low B12, folate and D. Supplementing these and going off gluten (and several other things) made a lot of difference to me.

Even if you have a biopsy that comes up negative, you should stilll give gluten free a good trial because non-celiac gluten intolerance is much more prevalent than celiac itself.

Bubba's Mom Enthusiast

Hi everyone!

I am new here! Have been reading a lot of posts and this forum has been super helpful!

Have had stomach issues for a very long time. This year some symptoms are more prominent ("fluffy stools", abdominal pain) Finally went to the GI who suggested based on my symptoms that I could have an ulcer, H pylori or Celiac Disease. He asked about my kids and if they had allergies... my oldest had very bad allergies and we had to use a nebulizer for him to stop coughing. He outgrew it. My youngest has eczema on his shins and elbows. He said he really thought this was gluten related and if I tested positive I should have my kids tested as well. He gave me Prilosec to take for 2 weeks.

He ordered the full Celiac Panel Blood Test, tested for H Pylori and some other things.

Just got a call from the nurse and said everything was normal, no signs of Celiac. H Pylori negative. I did have enlarged red blood cells (MCV) and now have to get my B-12 and folate checked. I am a vegan so it makes sense I could have a B-12 deficiency.

My question, what about my stomach? Why does it still hurt and why do I have the "fluffy" stools? Even with a B-12 deficiency these symptoms don't make much sense!

Anyone else have gone through this? Thank you so much in advance!!!!

:unsure:

You could be a sero-negative Celiac? Around 20-30% of us are. If your testing is done you can try gluten-free and see how you feel?

Fluffy stools could indicate that your gallbladder isn't working properly. More of a reason to try the gluten-free diet IMO.

confused123 Rookie

You could be a sero-negative Celiac? Around 20-30% of us are. If your testing is done you can try gluten-free and see how you feel?

Fluffy stools could indicate that your gallbladder isn't working properly. More of a reason to try the gluten-free diet IMO.

What do you mean by a sero-negative Celiac Bubba's mom? Is this when the blood panel test is negative? Thank you!!!

confused123 Rookie

I asked for copies of my results but don't have them yet. Yesterday I was tested for a vit B12 and folate deficiency to explain the high MCV reading. Waiting for that as well.

However, I went to the dentist and he said my teeth are eroding. Another dentist 8+ years ago mentioned the same thing. I am starting to wonder if this is Celiac related???

Too many coincidences?

frieze Community Regular

I asked for copies of my results but don't have them yet. Yesterday I was tested for a vit B12 and folate deficiency to explain the high MCV reading. Waiting for that as well.

However, I went to the dentist and he said my teeth are eroding. Another dentist 8+ years ago mentioned the same thing. I am starting to wonder if this is Celiac related???

Too many coincidences?

remember that most labs still use articficially low "low" readings on B12 levels. It should be over 500. Methylmalonic acid/homocysteine are prob. better tests...
ravenwoodglass Mentor

I asked for copies of my results but don't have them yet. Yesterday I was tested for a vit B12 and folate deficiency to explain the high MCV reading. Waiting for that as well.

However, I went to the dentist and he said my teeth are eroding. Another dentist 8+ years ago mentioned the same thing. I am starting to wonder if this is Celiac related???

Too many coincidences?

Welcome to the board. Yes those eroding teeth could be Celiac related. To answer your other question about sero-negative Celiac that is when you have a false negative blood test. I am one of that group and it took many years to get diagnosed because of that. Both my children did have positive blood tests though. After all Celiac related testing is done you should do a trial of the diet to see if it helps your problems. Sometimes the best test is our response to the diet.


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



Celiac.com Sponsor (A8-M):



confused123 Rookie

remember that most labs still use articficially low "low" readings on B12 levels. It should be over 500. Methylmalonic acid/homocysteine are prob. better tests...

Thanks for this info! Will post about my numbers once they call me with the results!

1desperateladysaved Proficient

I asked for copies of my results but don't have them yet. Yesterday I was tested for a vit B12 and folate deficiency to explain the high MCV reading. Waiting for that as well.

However, I went to the dentist and he said my teeth are eroding. Another dentist 8+ years ago mentioned the same thing. I am starting to wonder if this is Celiac related???

Too many coincidences?

I just wrote a blog in celiac.com about the dentist. For the short version, I think yes the teeth can have problems because of celiac. Mine began to have problems in high school or before.

mushroom Proficient

Dental enamel erosion is a typical celiac problem. Despite what the tests may be telling you, I would think you are most likely celiac. Flluffy, especially if they float, stools are very typical. You sound more and more celiac every day :rolleyes:

confused123 Rookie

Dental enamel erosion is a typical celiac problem. Despite what the tests may be telling you, I would think you are most likely celiac. Flluffy, especially if they float, stools are very typical. You sound more and more celiac every day :rolleyes:

Did I mention that I have terrible leg pain? And let me add that my youngest son has the same "fluffy" stools! And he complains frequently about stomach pains but even more about leg pain!!! I always thought this was growing pains. I just wish there was a reliable blood test out there that just said YES or NO. I am started to get frustrated that I might have something more serious but then I remember about my son and we both have VERY similar things going on. I am worried that if I test him his results will be negative too! Ugh so frustrated!!!! Sorry, needed to vent! :D
mars817 Rookie

We sound similar. I have horrible blood work(all my numbers pretty much are high or low the opposite of what they should be) plus I'm having horrible problems with my teeth. I've already had 3 fillings from pits in enamel and have 5 or 6 more to have done. No decay just nothing left, even with prescription toothpaste and calcium regeneration paste that hurts. My brother has celiacs, I have the gene but am still testing negative for it bloodwork wise and my biopsy was fine so I don't know..

confused123 Rookie

I finally have my RESULTS! I am kind of shocked to see just 2 things tested in what's called a Comprehensive Celiac Panel. I don't know if more testing was necessary. Please help fellow forum members! Here they are:

TISSUE TRANSGLUTAMINASE AB, IGA < 1 (Range: <4 no antibody detected)

IMMUNOGLOBULIN A 179 (Range: 81-463)

Now waiting on the B-12 and folate results.

Were more tests needed for the Celiac diagnosis?

Thank you!!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    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

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.