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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Blood Test Results High Mcv
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confused123    1

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:

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mushroom    1,205

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.

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Bubba's Mom    103

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.

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confused123    1

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!!!

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confused123    1

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?

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frieze    112

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...

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ravenwoodglass    1,211

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.

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confused123    1

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!

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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.

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mushroom    1,205

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:

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confused123    1

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

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mars817    1

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..

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confused123    1

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!!!

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