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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Newbie Here... High B12 And Folate, Anyone Know?
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Hello!

It was suggested by my new endocrinologist this week that I may have celiac. I didn't pay much attention because digestive problems are the least of my concerns. But upon researching it online, I think it may be a real possibility.

Some of my symptoms and diagnoses (which may or may not be celiac related) are iron-deficiency anemia (heavy menses), osteopenia (broke hip at age 26 from a simple fall), thyroid problems (nodules, goiter, possible Hashimoto's), extreme fatigue, episodes of heart racing and palpiations, near black-outs, migraines, chronic joint and muscle pain, memory problems, moods swings and depression, frequent illness (colds/flu, etc.) and more. I'm seeing several specialists in pursuit of a diagnosis.

Bloodwork generally shows slightly low levels of blood calcium, potassium and albumin. Of course, severely low iron. The confusing things is one doctor ran a B12 and folate and my levels of both came on too high (not too low). B12 was especially sky high.

Can you have celiac and have too high levels of B12 and folate? Or would this rule it out?

Thanks to anyone who reads this!

Kath~*

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Welcome to the board. You do sound like you could be one of us. Do you take supplements? If you are supplementing with folic acid that can give a false high reading on the B12. Has the doctor done a celiac panel on you? That should be your first step. Do be aware that the blood tests and even the biopsies are not as conclusive as many doctors think they are. After they do all the testing that you choose to do a dietary trial of the gluten-free diet, followed strictly may give you the answer the tests cannot. You have found a good place for info and support, read as much as you can take in and ask any questions you need to.

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Welcome to the board. You do sound like you could be one of us. Do you take supplements? If you are supplementing with folic acid that can give a false high reading on the B12. Has the doctor done a celiac panel on you? That should be your first step. Do be aware that the blood tests and even the biopsies are not as conclusive as many doctors think they are. After they do all the testing that you choose to do a dietary trial of the gluten-free diet, followed strictly may give you the answer the tests cannot. You have found a good place for info and support, read as much as you can take in and ask any questions you need to.

Hi ravenwoodglass, thanks for responding.

I was just at the endo on Monday, when he first mentioned the suspicion. He did draw blood, but I assumed it was only for thyroid panel and thyroid antibodies. I'll get the results soon and will then know if he did a celiac panel. If he didn't, I'll request one for sure, especially since I now suspect celiac in my children.

I take supplements sporadically (meaning I believe in them and have many, but am inconsistent in the discipline), including B-complex. However, I looked up high B12 and folate when I saw my test results, and according to what I read, it is impossible to have levels that high from supplementation. For example, normal lab values for B12 at the lab used are 243-894 and my level came in at 1508.

If celiac causes malabsorption of nutrients (which I do seem to have when it comes to calcium and potassium), how could I have such high levels of B12 and folate? I am just wondering if this alone would rule out celiac.

Also, I had a colonoscopy (routine) in January, and was told everything was "normal" - would there be any typical signs found in that section of the bowel, even though diagnosis is made w/the small (not large) intestine?

Thank you again

Kath~*

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[snip]

I take supplements sporadically (meaning I believe in them and have many, but am inconsistent in the discipline), including B-complex. However, I looked up high B12 and folate when I saw my test results, and according to what I read, it is impossible to have levels that high from supplementation. For example, normal lab values for B12 at the lab used are 243-894 and my level came in at 1508.

If celiac causes malabsorption of nutrients (which I do seem to have when it comes to calcium and potassium), how could I have such high levels of B12 and folate? I am just wondering if this alone would rule out celiac.

there are a variety of conditions that can cause a 'false' B12/folate assay. most of them are diseases of the liver and associated with overall high blood protein levels. however, before you google, find bad things, and panic, there are also a fair number of drugs that will interfere with the B12/folate assay. i assume that your doc has a list of your meds (if any) and can doublecheck them with the clinical lab if he's not sure.

btw -- sporadic is good with supplements. they are usually more trouble than they are worth and the concept that they 'do no harm' is absolutely false. a good multi is all anyone usually needs (except in special cases). in general, celiacs are deficient in B-vitamins ONLY when eating gluten and intestinal damage is present. blood levels tend to rise back to normal on a gluten free diet.

that is not to say, however, that there are not other malabsorptions that can be ASSOCIATED with celiac disease in specific individuals -- even gluten-free celiacs. these are due, in part, to diet, degree of damage of the intestinal mucosa prior to diagnosis, as well as the usual family and personal medical histories.

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there are a variety of conditions that can cause a 'false' B12/folate assay. most of them are diseases of the liver and associated with overall high blood protein levels. however, before you google, find bad things, and panic, there are also a fair number of drugs that will interfere with the B12/folate assay. i assume that your doc has a list of your meds (if any) and can doublecheck them with the clinical lab if he's not sure.

btw -- sporadic is good with supplements. they are usually more trouble than they are worth and the concept that they 'do no harm' is absolutely false. a good multi is all anyone usually needs (except in special cases). in general, celiacs are deficient in B-vitamins ONLY when eating gluten and intestinal damage is present. blood levels tend to rise back to normal on a gluten free diet.

that is not to say, however, that there are not other malabsorptions that can be ASSOCIATED with celiac disease in specific individuals -- even gluten-free celiacs. these are due, in part, to diet, degree of damage of the intestinal mucosa prior to diagnosis, as well as the usual family and personal medical histories.

Hi, there were some rare and not good things online associated with these high levels. But my doctor said they only worry about low levels, not high. They were checking for pernicious anemia at the time. So if I do have celiac (and yes I've been eating gluten), it has not made me deficient in B vitamins. I am deficient in calcium and potassium though, and I broke my hip at age 26 from a simple fall, so that's really Something. I have so many bizarre symptoms, I could be on the Mystery Diagnosis show.

I called my endo today to ask what bloodwork he ordered. Found out he did not order anything regarding celiac. I told the nurse I would like to be screened. From what I'm reading online, there is very accurate blood testing available now that would at least rule it out if you don't have it, and do a pretty good job of confirming it if you do, even without an intestinal bioposy.

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Hi Gateway,

Your symptoms do sound very suspisciously like Celiac Disease. If you are taking a B vitamin with B12, you will get strange numbers. Before being diagnosed with Celiac, my Neuro found my B12 deficiency. I went from 200 to 2000 in just a couple of months from taking B12 and B complex.

I do disagree with the thought that you will not need the B12 once gluten free. For many Celiacs, we have had the disease all our lives and things don't get fixed as easily as some would like to believe including doctors!!

I to am not perfect at taking my vitamins every day and around December I found I was heading into deficiency of B12 and I have been gluten free for almost 3 years now.

Have you had your Vitamin D3 checked? That is so important for Osteopenia. You need D3 to absorb calcium so I am betting you are low or deficient. Ask for that when you ask for you Celiac Panel. A low vitamin D3 may also be causing your joint pain too.

You might want to have them check Zinc and copper too. There have been studies in Pubmed that are finally recognizing that zinc is also a big problem with Celiacs...the reason not much is known yet is that doctors never look for zinc deficiency.

As for your thyroid issues, I found Elaine Moore and Mary Shomon to be very helpful with my daughter who ended up with Graves Disease too. They were the ones that suggested watching selenium, zinc, copper and a few others. I am sure my daughter was Hypo first and the family doctor did not address her slightly high TSH. She was very symptomatic and went from 90 pounds to 115 and it all was in her face and arms. Then she crashed and her TSH went from a 5.4 to a .001 So, I would be really careful and read all the great and latest information on the thyroid. Thankfully I read their info and kept them from killing the thyroid. She is now off all medications and is in remission. But she does take zinc, B12, D3, B complex, a probiotic everyday.

A multi vitamin will not work for many Celiacs as their intestines may heal but may never absorb correctly. I know because I have a whole houseful of Celiacs. I think most of the celiacs in my support group are taking vitamins prescribed by their doctors.

For Vitamin D3 information, you may want to google and find Dr. Cannell...he is the expert and is finally making all the doctors aware of how serious it is to be deficient.

Are your ferritin levels low? Usually low ferritin is a tip that Celiac may be involved and it is very common for it to be low. And, not all have low B12.

Also, if you want to get a true picture of B12, you may ask to get a homocysteine level and an MMA (Methylmalonic Acid test) I also notice my MCH and MCV bloot tests are slightly high when I am B12 deficient. And, did they check your folic acid?

I would ask to have all these tests done immediately....if your iron is dangerously low, you want that fixed as soon as possible. You don't have to see a doctor to have the lab work done. Just ask them to write a script and include the vitamins too.

Best of luck to you

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Hi Gateway,

Your symptoms do sound very suspisciously like Celiac Disease. If you are taking a B vitamin with B12, you will get strange numbers. Before being diagnosed with Celiac, my Neuro found my B12 deficiency. I went from 200 to 2000 in just a couple of months from taking B12 and B complex.

I do disagree with the thought that you will not need the B12 once gluten free. For many Celiacs, we have had the disease all our lives and things don't get fixed as easily as some would like to believe including doctors!!

I to am not perfect at taking my vitamins every day and around December I found I was heading into deficiency of B12 and I have been gluten free for almost 3 years now.

Have you had your Vitamin D3 checked? That is so important for Osteopenia. You need D3 to absorb calcium so I am betting you are low or deficient. Ask for that when you ask for you Celiac Panel. A low vitamin D3 may also be causing your joint pain too.

You might want to have them check Zinc and copper too. There have been studies in Pubmed that are finally recognizing that zinc is also a big problem with Celiacs...the reason not much is known yet is that doctors never look for zinc deficiency.

As for your thyroid issues, I found Elaine Moore and Mary Shomon to be very helpful with my daughter who ended up with Graves Disease too. They were the ones that suggested watching selenium, zinc, copper and a few others. I am sure my daughter was Hypo first and the family doctor did not address her slightly high TSH. She was very symptomatic and went from 90 pounds to 115 and it all was in her face and arms. Then she crashed and her TSH went from a 5.4 to a .001 So, I would be really careful and read all the great and latest information on the thyroid. Thankfully I read their info and kept them from killing the thyroid. She is now off all medications and is in remission. But she does take zinc, B12, D3, B complex, a probiotic everyday.

A multi vitamin will not work for many Celiacs as their intestines may heal but may never absorb correctly. I know because I have a whole houseful of Celiacs. I think most of the celiacs in my support group are taking vitamins prescribed by their doctors.

For Vitamin D3 information, you may want to google and find Dr. Cannell...he is the expert and is finally making all the doctors aware of how serious it is to be deficient.

Are your ferritin levels low? Usually low ferritin is a tip that Celiac may be involved and it is very common for it to be low. And, not all have low B12.

Also, if you want to get a true picture of B12, you may ask to get a homocysteine level and an MMA (Methylmalonic Acid test) I also notice my MCH and MCV bloot tests are slightly high when I am B12 deficient. And, did they check your folic acid?

I would ask to have all these tests done immediately....if your iron is dangerously low, you want that fixed as soon as possible. You don't have to see a doctor to have the lab work done. Just ask them to write a script and include the vitamins too.

Best of luck to you

Hi, thanks for writing.

What I know so far is, my calcium is low, potassium low, creatinine low, iron and ferritin low (15), Hgb and Hct low, RBC low, RDW high, TIBC high, B12 high, folate high.

I found out what the endo ordered 3 days ago - it was a thyro panel, prolactin, phosphorus, 25 hydroxy vitamin D and a complete metabolic panel. I hope to have those results Monday.

I can't find it now, but I believe I had D3 tested thru another doc and it came back normal. That would have been at the beginning of this year or so.

I am concerned for my children, especially my youngest who has delayed puberty, is shorter than all the boys in his grade, and is autistic. He had severe bowel problems as a young child. I don't know whether to wait until I find out about myself, or just start asking to have him tested now regardless. My older son has terrible acne problems, face and back. But that doesn't seem to match the areas of the body that the celiac dermatitis affects (?)

My digestion is actually very good. I don't get bloated, don't have pain, rarely have gas. But I guess not all celiac people have digestive issues. I used to have constipation, but that's easily controlled with fiber for me.

In a way, I am hoping I have celiac (and my son) - because THEN we'd have something we can actually DO about these problems.

Kath~*

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I am concerned for my children, especially my youngest who has delayed puberty, is shorter than all the boys in his grade, and is autistic. He had severe bowel problems as a young child. I don't know whether to wait until I find out about myself, or just start asking to have him tested now regardless. My older son has terrible acne problems, face and back. But that doesn't seem to match the areas of the body that the celiac dermatitis affects (?)

My digestion is actually very good. I don't get bloated, don't have pain, rarely have gas. But I guess not all celiac people have digestive issues. I used to have constipation, but that's easily controlled with fiber for me.

In a way, I am hoping I have celiac (and my son) - because THEN we'd have something we can actually DO about these problems.

Kath~*

Hello Kath-

I am a recently diagnosed celiac...there are others on this board that can give much better advise. This is what I have learned in the past two months...celiacs are very hard to diagnose...it is not a matter of the docs missing it..it is a matter of US Docs are not trained to look for celiac.

The blood tests are often misleading...I suffered for the past 20 years with undiagnosed/misdiagnosed problems...which you will find are very common among celiacs.

If I might...how old are you...the major bloat didn't happen to me until my late 30s/early40s, but in hind-sight many of my symptoms were celiac. I am nearly 44 years old, am 43 days gluten-free and have a host of medical problems that docs either scratched their heads ate or dismissed because blood work all came back "normal" until the IgA tTG came back only slightly elevated.

I noticed your post and responded because of your mention of kids...since I heard the possibility of celiac two months ago we have had a domino effect on my children and one grandchild...we are awaiting results on my kids, but I can tell you that my 18 month old grand went gluten-free upon hearing the possiblility of gluten allergy 8 weeks ago, because he has had severe food allergies that docs could not figure out. 8 weeks later he is the picture of health...sleeps thru the night, no tummy troubles, solid (business). This good news has reaffirmed all our family's desire to get to the bottom of our health issues.

Celiac is great new for me...and many others after a very long struggle with the medical community.

I do caution you...there are many reasons to gain an actual diagnosis of Celiac - if you go gluten free before diagnosis, it becomes nearly impossible to determine.

Take care, hang in there.

-Lisa

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Hello Kath-

I am a recently diagnosed celiac...there are others on this board that can give much better advise. This is what I have learned in the past two months...celiacs are very hard to diagnose...it is not a matter of the docs missing it..it is a matter of US Docs are not trained to look for celiac.

The blood tests are often misleading...I suffered for the past 20 years with undiagnosed/misdiagnosed problems...which you will find are very common among celiacs.

If I might...how old are you...the major bloat didn't happen to me until my late 30s/early40s, but in hind-sight many of my symptoms were celiac. I am nearly 44 years old, am 43 days gluten-free and have a host of medical problems that docs either scratched their heads ate or dismissed because blood work all came back "normal" until the IgA tTG came back only slightly elevated.

I noticed your post and responded because of your mention of kids...since I heard the possibility of celiac two months ago we have had a domino effect on my children and one grandchild...we are awaiting results on my kids, but I can tell you that my 18 month old grand went gluten-free upon hearing the possiblility of gluten allergy 8 weeks ago, because he has had severe food allergies that docs could not figure out. 8 weeks later he is the picture of health...sleeps thru the night, no tummy troubles, solid (business). This good news has reaffirmed all our family's desire to get to the bottom of our health issues.

Celiac is great new for me...and many others after a very long struggle with the medical community.

I do caution you...there are many reasons to gain an actual diagnosis of Celiac - if you go gluten free before diagnosis, it becomes nearly impossible to determine.

Take care, hang in there.

-Lisa

Hi Lisa,

Thanks for writing. Glad you got properly diagnosed finally, and your family members. I am 41. I guess the question is, to avoid drawing this out indefinitely, what are all the proper blood tests to begin with? I don't want to just do a preliminary round, wait and see, and then see if I need a different round based on the first (if possible). However, I imagine with insurance costs and etc. there is a protocol to follow. The intestinal biopsy seems invasive and possibly unecessary if you are willing to just get off the gluten based on the bloodwork. Then again, if your bloodwork doesn't look suspicious I would imagine it would be very hard to get a doc to agree to do the biopsy.

I just want to know the most efficient way to proceed. If I have this (and my kids), I don't want to draw it out for months before doing something about it. Have already suffered enough.

Kath~*

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Dear Kath,

Here is a good place to read about tests:

http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

These are the tests you want done. Many doctors still think the Gliadin tests should be done but many are ignoring these tests. I have met people with positive biopsies and only a positive gliadin IgG so that is why I recommend the complete panel.

1.Anti-gliadin antibodies (AGA) both IgA and IgG

2.Anti-endomysial antibodies (EMA) - IgA

3.Anti-tissue transglutaminase antibodies (tTG) - IgA

4.Total IgA level.

Also a DNA test is helpful when having symptoms which you do have....Iron deficiency is a symptom of Celiac especially low ferritin and high TIBC:

HLA DQ2 is expressed in the majority (>90%) of those with celiac disease and DQ8 in about 8%. The expression of these HLA-DQ2 or DQ8 molecules is necessary but not sufficient to develop celiac disease and accounts for only about 50% of the genetic component of the disease.

Hope this helps.

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Dear Kath,

Here is a good place to read about tests:

http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

These are the tests you want done. Many doctors still think the Gliadin tests should be done but many are ignoring these tests. I have met people with positive biopsies and only a positive gliadin IgG so that is why I recommend the complete panel.

1.Anti-gliadin antibodies (AGA) both IgA and IgG

2.Anti-endomysial antibodies (EMA) - IgA

3.Anti-tissue transglutaminase antibodies (tTG) - IgA

4.Total IgA level.

Also a DNA test is helpful when having symptoms which you do have....Iron deficiency is a symptom of Celiac especially low ferritin and high TIBC:

Hope this helps.

Thank you - when you say a DNA test, is there a specific type to ask for?

I was always told my iron issues are due to my heavy menses (severe), and I think this is true, but maybe celiac causes the heavy menses in the first place?

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Thank you - when you say a DNA test, is there a specific type to ask for?

I was always told my iron issues are due to my heavy menses (severe), and I think this is true, but maybe celiac causes the heavy menses in the first place?

Hello again,

Just wanted to give you an update. I went to a different doctor yesterday for an unrelated appointment and asked her if she would order the celiac panel (the 4 tests you posted) for me. She did agree, and the blood was drawn.

On pins and needles - hope it shows something definitive either way.

Kath~*

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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