[bobbyj]

Hello all, I'm hoping some of you can answer my questions about B12 deficiency and possible gluten intolerance. I'm a 38 y-o male and was diagnosed with B12 deficient anaemia four months ago. I don't know the cause of it. I am wondering whether celiac/gluten intolerance may be the cause. I live in Asia in a country with very limited medical expertise in this field. I have not been able to have any specific blood/antibody tests for gluten intolerance, but I have had an Esophago-Gastro-Duodenoscopy (EGD) and a colonoscopy, and biopsies. The results were all fine, according to my doctor (who wasn't able to give me any explanation for my B12 deficiency) but I still have unresolved questions.

My biopsy results showed:

Mild chronic ileitis with slightly flattened mucosa in the lamina propia, terminal ileum (with no increased eosinophils or parasites seen).

Moderate or mild mononuclear cells in the antrum, body and incisura. No H pylori organisms identified.

Moderate intestinal metaplasia in the antrum.

I'm wondering whether these results indicate gluten intolerance/celiac disease and, if so, whether this could explain my B12 deficiency? What I don't know is whether "slightly flattened mucosa" would constitute enough damage to the villi to prevent/reduce absorption of B12, or would the mucosa have to be significantly flattened? Secondly, if flattened mucosa were the explanation for my B12 deficiency, should I also have suffered deficiency of other nutrients (particularly iron), which apparently I did not?

In addition, do the "moderate or mild mononuclear cells" and the "moderate intestinal metaplasia" potentially mean anything regarding gluten intolerance?

Any answers or comments from those on this forum who are more knowledgeable than I on these issues would be very welcome.

Thanks greatly.

[Jaspar]

I wish only to address the B12 deficiency & possible gluten intolerance.

When there is an issue of intestinal malabsorption, deficiencies of nutrients are not all the ame. There is some genetic variablilty which in a healthy individual may not matter but in an intestinall-impaired one may make a huge difference.

For instance, some people have a genetic problem with the absorption, metabolism or utilization of Vitamin B12 & folate (vitamin B9). Another person may have genetic variations affecting the absrption of calcium. In those people, osteoporosis may be the bigger issue. And again, if it were not for the malabsorption to begin with, they might have grown old wthout ever being profoundly and adversely affected by those calcium absorption genes.

1- You may benefit from shots of B vitamins. You may benefit from the methylated forms of B vitamins. In the United States, a prescription methylated B vitamin exists called "Metanx", but these ingredients are also over-the-counter and can be obtained via the Internet.

2- You may benefit from a gluten-free diet, and dairy-free as well.

Jaspar

[darlindeb25]

I'm wondering whether these results indicate gluten intolerance/celiac disease and, if so, whether this could explain my B12 deficiency? What I don't know is whether "slightly flattened mucosa" would constitute enough damage to the villi to prevent/reduce absorption of B12, or would the mucosa have to be significantly flattened? Secondly, if flattened mucosa were the explanation for my B12 deficiency, should I also have suffered deficiency of other nutrients (particularly iron), which apparently I did not?

Who can know for sure? I don't think enough is known about celiac disease yet. People with DH are celiac, and they often times do not have flattened villi...how do we explain that?

If I were you, I would request a celiac panel be done. This will give you your IGG and IGA levels, plus your gene makeup and blood work. This could help you make up your mind too.

A gluten free diet can not hurt anyone. If you want to test the theory, then go gluten free and see what happens. I take 3000 mcgs of B12 methylcobalamin and my level is lower now than it was 3 yrs ago when I was taking 1000mcgs. Problem for me is, I was never tested for B12 before I started taking supplements, so we will never have a true level for me. I think I am not absorbing my B12 properly, even though my tests show a level of 1015. My iron was never terribly low, not to my knowledge. My sisters was so low, they told her she would need iron transfusions once a month for the rest of her life. Gluten free has changed that for her, no transfusions any more.

B12 deficiency is a very strong part of gluten intolerance. Gluten in a celiac/gluten intolerant's body changes so many things.

[bobbyj]

Hello all. It's been a while, but I have now had some celiac blood tests done and am looking for some help to interpret the results:

Anti-endomysial IgA - negative
Gliadin Peptides IgA - 2 RU/ml (normal range: 0-25 RU/ml)
Gliadin Peptides IgG - 109 (normal range: 0-25 RU/ml)

I was also tested for Intrinsic Factor antibodies and Parietal Cell antibodies (to test for pernicious anaemia, a cause of B12 deficiency) but was negative for both.

My doctor told me that the tests rule out celiac disease. He couldn't offer any explanation for why my Gliadin Peptides IgG result was so high - more than four times the upper normal range.

I don't know how normal or otherwise it is to have a very elevated Gliadin IgG result with a normal Gliadin IgA result, but I'd welcome any information on what this may mean.

Thanks.

[pabb]

Originally Posted by bobbyj

Hello all. It's been a while, but I have now had some celiac blood tests done and am looking for some help to interpret the results:

Anti-endomysial IgA - negative
Gliadin Peptides IgA - 2 RU/ml (normal range: 0-25 RU/ml)
Gliadin Peptides IgG - 109 (normal range: 0-25 RU/ml)

I was also tested for Intrinsic Factor antibodies and Parietal Cell antibodies (to test for pernicious anaemia, a cause of B12 deficiency) but was negative for both.

My doctor told me that the tests rule out celiac disease. He couldn't offer any explanation for why my Gliadin Peptides IgG result was so high - more than four times the upper normal range.

I don't know how normal or otherwise it is to have a very elevated Gliadin IgG result with a normal Gliadin IgA result, but I'd welcome any information on what this may mean.

Thanks.

if they didnt test for total IgA, they may have missed that you are genetically unable to make that particular antibody in normal amounts....either get tested for that or try the gluten free diet.....in asia this should be reasonablly simple, yes?

[jccgf]

Originally Posted by bobbyj

Hello all. It's been a while, but I have now had some celiac blood tests done and am looking for some help to interpret the results:

Anti-endomysial IgA - negative
Gliadin Peptides IgA - 2 RU/ml (normal range: 0-25 RU/ml)
Gliadin Peptides IgG - 109 (normal range: 0-25 RU/ml)

I was also tested for Intrinsic Factor antibodies and Parietal Cell antibodies (to test for pernicious anaemia, a cause of B12 deficiency) but was negative for both.

My doctor told me that the tests rule out celiac disease. He couldn't offer any explanation for why my Gliadin Peptides IgG result was so high - more than four times the upper normal range.

I don't know how normal or otherwise it is to have a very elevated Gliadin IgG result with a normal Gliadin IgA result, but I'd welcome any information on what this may mean.

Thanks.

Pabb is absolutely correct. They need to rule out IgA deficiency, a condition where one just doesn't make IgA, or makes significantly less IgA than 'normal'. There is an increased association between celiac disease and IgA deficiency. IgA antibody tests are not reliable tests for those who don't make IgA because it may cause false negative results!

So... they should either test Total IgA, to be sure you are not IgA deficient. OR... they could test for anti-tTG IgG, or anti-endomysial IgG, which are available tests. Failing to rule out IgA deficiency is a common pitfall in diagnostic testing.

Celiac Disease and Immunoglobulin A Deficiency... by Kumar, et al.

Selective IgA Deficiency -IDF Patient/ Family Handbook


I am not convinced celiac disease has been properly ruled out... because
1) Your biopsy results are suspicious to me, showing mild chronic ileitis with slightly flattened mucosa in the lamina propia, terminal ileum
2) They haven't ruled out IgA deficiency which could cause false negatives on your blood work.


But.... beyond that... your very high antigliadin IgG should not be dismissed!!! For many, many, many of us, a positive antigliadin IgG is the ONLY clue we had that gluten was our enemy. It DOES indicate gluten sensitivity. My daughter had an isolated positive antigliadin IgG of just 30, and has benefited hugely from a gluten free diet.

This gets into the definitions of gluten sensitivity vs. celiac disease.

Celiac disease, by definition, requires biopsy evidence of flattened villi. This flattening is caused by autoantibodies, anti-tTG, which attack the intestinal villi. When these autoantibodies are present, there is 95% or better odds that damage will be found on biopsy. It should be noted that up to 20% of those with biopsy proven celiac disease do not have a positive anti-tTG, according to several studies.
http://jccglutenfree.googlepages.com...testsandbiopsy

Antigliadin antibodies indicate an abnormal immune response to gluten, but they are not autoantibodies that attack intestinal villi.

Antigliadin antibodies are not as specific to celiac disease (not as specific to villous atrophy), but they may the only antibody present in those who suffer wide ranging systemic problems associated with gluten sensitivity. Unfortunately, many doctors discount gluten sensitivity unless it shows as celiac disease, and many many patients continue to suffer because of it. Thankfully, more and more doctors are becoming aware. Researchers over the last ten years have proved gluten sensitivity can cause serious health problems without showing as 'celiac disease', but still... most doctors are operating under old truths.

Let me offer these links for further explanation.

On gluten sensitivity vs. celiac disease:
http://jccglutenfree.googlepages.com...sceliacdisease
(this includes links to various articles and sites from doctors who understand the broader reach of gluten sensitivity)

On the meaning of antigliadin antibodies:
http://jccglutenfree.googlepages.com...niggantibodies
(be sure to read the right column excerpt, and check out all the conditions associated with antigliadin antibodies... many of which remit on gluten free diet.)

Here are some of the best articles to explain the wide reaches of gluten sensitivity... that isn't necessarily celiac disease.

"Early Diagnosis Of Gluten Sensitivity: Before the Villi Are Gone" by Kenneth Fine, MD

Gluten intolerance: a paradigm of an epidemic by Stacy Astor Shaul

Gluten sensitivity as a neurological illness, M Hadjivassiliou, et al.
(this article is free, but you have to register..but I have excerpts of it here: http://jccglutenfree.googlepages.com/diagnostictesting , )



Bottom line, do yourself a big favor, and go gluten free and take your daily mega dose B12, despite you negative celiac diagnosis. Kudos to you for your continued persistance in obtaining the right tests. You may still want to pursue total IgA (can be done anytime in the future...no need to be eating gluten) or anti-tTG IgG (sooner rather than later because you need to be eating gluten). However, the extremly high antigliadin antibody is all the evidence you need to justify being gluten free for life, imo.

I was B12 deficient, too, btw. Intrinsic factor and parietal cell antibody were negative for me, too. I didn't have any positive gliadin antibodies, but went gluten free to support my daughter (story here)... and benefited greatly. Many lifetime symptoms disappeared. In theory, if B12 deficiency is caused by gluten/celiac, once the intestines heal and there is better absorption, the B12 deficiency should self correct. Well... after 8 years gluten free, I still need my daily dose of 1000mcg B12. My symptoms return within weeks if I stop or get slack. Still have no absolute reason for why. You can have pernicious anemia without the antibodies (intrisic factor, parietal cell)... and many other things can cause B12 deficiency...including low stomach acid, use of antacids, and many other things).

You didn't mention your symptoms. I assume you have some if you have been going through this testing. Gluten sensitivity, even without celiac disease, can cause wide ranging symptoms... neurological disease, GI disease, skin disease, bone disease, liver disease, kidney disease, psychiatric problems, on and on and on.

Hope this helps....

Cara

[bobbyj]

Thanks for your replies, pabb and jccglutenfree.

No, I was not tested for total IgA. Because I registered something (2 RU/ml) for the Gliadin IgA, I was assuming that this meant that I was not IgA deficient - ie. if I was deficient, I would have registered nothing. Is this not right?

If I am not IgA deficient, then what would such a high level of Gliadin IgG potentially mean? Wouldn't it be unusual to have high IgG but normal IgA?

Thanks for your links, Cara, which I've been looking at. I also found this on ** website:

>>If a patient’s celiac panel is only positive for antigliadin IgG, this is not highly suggestive for CELIAC DISEASE if the patient has a normal total IgA level, corrected for age. [...] A markedly elevated antigliadin IgG, such as greater than three to four times the upper limit of normal for that lab, is highly suggestive of a condition where the gut is leakier to gluten. This can happen in food allergies, cystic fibrosis, parasitic infections, Crohn’s disease, and other types of autoimmune GI diseases.<<

I've found other material on the web about so-called "leaky gut syndrome", though it seems this is somewhat controversial and not an accepted diagnosis in mainstream medicine.

My symptoms have been fatigue/lethargy (which is why I was first checked for Vitamin B12 and found to be deficient). I had B12 shots and was taking B12 sublinguals but have had no noticeable increase in energy. Other symptoms have been short term memory loss and some other cognitive symptoms (lack of clarity, generally feeling slow mentally, thinking one word but saying another); depression and anxiety; psoriasis and eczema (pre-existing for years); thirst/dry mouth; thinning hair. Previously I had some tingling and numbness in the extremities but this has stopped.

Any additional advice or ideas from anyone would be welcome. Thanks greatly.

[jccgf]

From what I have read in the past, it is considered Total IgA deficency if you have a total IgA of 7 or below. I've seen slight variances in this value, like 10 instead of 7. However, even if you are just below normal range in total IgA, you can still be considered IgA deficient.... just not completely IgA deficient.

The degree to which "low" IgA affects IgA antibody testing is debatable, however, there has been at least one celiac expert who has said "it can" make a difference. If you make less IgA overall, it makes sense you may make less antigliadin IgA. It may not be a factor in your case.

What antigliadin IgG means is not well defined. It is the least specific of the markers for indicating villous atrophy, and it is seen in conditions other than celiac disease. I have heard it explained that antigliadin IgA is more specific for villous atrophy, and antigliadin IgG may be seen more often in non-gut manifestations. Still, I have met several biopsy proven celiacs who had only an isolate antigliadin IgG.

Statistics for what these various tests mean vary depending upon the study, but here is an example of how specific they are to celiac disease defined by villous atrophy.

The positive predictive value of IgA anti-tTG was 90% and the negative predictive value, 98%. In comparison, results for IgA EMA were 100% and 97%, IgA AGA 94% and 90%, and IgG AGA 70% and 98%, respectively.
Diagnosing celiac disease: a comparison of human tissue transglutaminase antibodies with antigliadin and antiendomysium antibodies. PMID: 15184223 June 2004

Dr. Hadjivasiliou's research with gluten sensitive neurological disease says that antigliadin IgG is the most specific marker available in these patients.

Leaky gut syndrome is making "mainstream" medicine, however, you will more likely see it referred to as intestinal permeability rather than leaky gut syndrome. Probiotics are beginning to make "mainstream" medicine, too.

There is something called zonulin, a protein which controls the tight junction spaces in the intestinal lining and the blood/brain barrier. Dr. Alescio Fasano, a leading celiac researcher, discovered this less than ten years ago. People with celiac disease, diabetes, MS, and other autoimmune diseases have been found to produce more zonulin than the average joe. A zonulin blocking drug is currently in clinical trials that may be used to treat celiac disease, diabetes, and possibly other autoimmune disease. http://jccglutenfree.googlepages.com/zonulin

And, other things can cause leaky gut, too, like bacterial overgrowth, yeast overgrowth, parasites, viruses, etc. And this may lead to gluten and other food sensitivities, without celiac disease.

This is such a huge subject, and currently under heavy research. They know more today than yesterday, and will know more tomorrow than today. In the meantime, a gluten free diet would likely help you~ btw, there is a page on psoriasis and gluten in the The Gluten File, too. The most recent study, 2009, is this:

Nutritional influences in psoriasis

Araujo ML, Burgos MG, Moura IS.
Universidade Federal de Pernambuco, Recife, PE, Brazil.
Psoriasis is an inherited inflammatory skin disease mediated by T-cells and influenced by environmental factors. High intake of omega-3, fasting, low-calorie and vegetarian diets show beneficial effects. Some patients presenting IgA/IgG antigliadin antibodies and who are gluten-sensitive improve after a gluten-free diet. Calcitriol is used in topical treatment. The use of alcohol may exacerbate the disease. In this report, diet factors are analyzed and their benefits in psoriasis are described.
PMID: 19377768

Just keep reading and talking to others who have gluten sensitivity. Do keep taking the B12 forever, too! I had some of those same symptoms when B12 deficient. I hope you will decide to do a six month gluten free trial, at least, to see if you notice any differences. Many who have problems with gluten also have problems with casein (cow's milk).

The energy part... I still struggle with this... and it always amazes me that when I get back on a full regimen of vitamins... I am always more energetic. Most recently, I have found supplementing vitamin D this winter has helped my energy level. I also need to be sure to take a B-complex, and supplementing omega 3's can help with energy levels, too.

Do you have thyroid disease?

[pabb]

Originally Posted by bobbyj

Thanks for your replies, pabb and jccglutenfree.

No, I was not tested for total IgA. Because I registered something (2 RU/ml) for the Gliadin IgA, I was assuming that this meant that I was not IgA deficient - ie. if I was deficient, I would have registered nothing. Is this not right?

If I am not IgA deficient, then what would such a high level of Gliadin IgG potentially mean? Wouldn't it be unusual to have high IgG but normal IgA?

Thanks for your links, Cara, which I've been looking at. I also found this on ** website:

>>If a patient’s celiac panel is only positive for antigliadin IgG, this is not highly suggestive for CELIAC DISEASE if the patient has a normal total IgA level, corrected for age. [...] A markedly elevated antigliadin IgG, such as greater than three to four times the upper limit of normal for that lab, is highly suggestive of a condition where the gut is leakier to gluten. This can happen in food allergies, cystic fibrosis, parasitic infections, Crohn’s disease, and other types of autoimmune GI diseases.<<

I've found other material on the web about so-called "leaky gut syndrome", though it seems this is somewhat controversial and not an accepted diagnosis in mainstream medicine.

My symptoms have been fatigue/lethargy (which is why I was first checked for Vitamin B12 and found to be deficient). I had B12 shots and was taking B12 sublinguals but have had no noticeable increase in energy. Other symptoms have been short term memory loss and some other cognitive symptoms (lack of clarity, generally feeling slow mentally, thinking one word but saying another); depression and anxiety; psoriasis and eczema (pre-existing for years); thirst/dry mouth; thinning hair. Previously I had some tingling and numbness in the extremities but this has stopped.

Any additional advice or ideas from anyone would be welcome. Thanks greatly.

now, you KNOW what they say about that word........

[bobbyj]

Thanks for the additional info, Cara. No, I don't have thyroid problems according to my test results (TSH, T3 and T4 were fine).

Thanks once more.