New To Forum - B12 Deficiency And Gluten Intolerance?

[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.

[ShayFL]

It is the flattened mucosa that give it a way. There ARE other things that can cause damage to your villi. But B12 deficiency is common in gluten intolerance/Celiac. If you cannot get a definitive Dx there in Asia, you have nothing to lose by going 100% gluten-free to see if your symptoms improve and it IS a healthy diet.

[Mother of Jibril]

I just wanted to add a couple of things about B-12...

Vegetarians (and especially vegans) have a hard time getting enough B-12. What is your diet like?Also... to digest meat, your stomach needs to have enough acid and pepsin. If the parietal cells in your stomach have been destroyed by your immune system (pernicious anemia) then you'll probably need to have B-12 injections to keep your levels up. You could also try taking B-12 tablets by letting them dissolve under your tongue (that bypasses your digestive system). On the issue of digesting meat, you could try eating your protein meals with acid (vinegar, lemon juice), although even better would be if you could get some Betaine HCl tablets with pepsin.

[leadmeastray88]

Hi there,

I had vitamin B12 deficiency prior to going gluten free and prior to my diagnosis. I take sublingual B12 tablets now and am doing fine.

I agree with ShayFL that the most telling of your tests is the 'slightly flattened mucosa'. This is from Wikipedia:

"Impaired absorption of vitamin B12 in the setting of a more generalised malabsorption or maldigestion syndrome. This includes any form of structural damage or wide surgical resection of the terminal ileum (the principal site of vitamin B12 absorption), forms of achlorhydria (including that artificially induced by drugs such as proton pump inhibitors), as well as bacterial overgrowth (such as in blind loop syndrome)."

You said that the damaged mucosa was found in your ileum, and that is where B12 is absorbed, so that is why you're deficient. You would think your doctor would put two and two together with this one, because you said he doesn't know why you're deficient. There you go, that's why. The cause however is obviously not clear because you've ruled out possibilities such as parasites.

You should ask your doctor if he will do the bloodwork for Celiac. Ask for ALL of these, not some but all:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

And it would also be a good thing to rule out any other possibilities!

I hope you find the answers to your problems soon!

[MaryJones2]

Hi bobbyj,

It's very important to know if your b12 deficiency is caused by pernicious anemia or malabsorption. If you have pernicious anemia your body lacks things (intrinsic factor) that are necessary to properly absorb b12 through your digestive tract regardless of how much you swallow so you will have to get it in other ways (usually as an injection). A Schilling Test will tell you if your b12 deficiency is caused by pernicious anemia.

[bobbyj]

Thanks to all for your replies.

I've been taking B12 injections and also sub-lingual lozenges. Strangly, my symptoms - primarily fatigue - have not improved much, though.

I don't know if I have pernicious anemia - the relevants tests (Intrinsic Factor antibody, Schilling test, etc) are not available where I live.

Similarly, I can't do the celiac disease antibody tests here.

I'm curious about people with confirmed celiac disease who have had an endoscopy or colonscopy. Are their results generally similar to mine (in terms of slightly flattened villi) or are there also other indicators of celiac disease in their biopsy results? According to another doctor I saw today, a biopsy should conclusively reveal whether or not there is celiac disease.

The doctor who did the colonscopy did not tell me that the B12 deficiency was caused by the flattened mucosa. She basically said that intestinal malabsorption could be ruled out as a cause of my deficiency, because I did not have symptoms such as chronic diarrhea and I did not have other deficiencies, particularly iron deficiency. She gave the same reasons for why she didn't think I had celiac disease (when I raised the issue, not her). She said that in even mild cases of celiac disease there would be an iron deficiency.

As I am not convinced of my doctor's knowledge on this subject, I'd appreciate any further thoughts from forum members. In addition, any suggestions of knowledgeable doctors (anywhere in the world) who I might try to consult with by email to get a second opinion on my test results would be much appreciated.

Thanks.

[Mother of Jibril]

I've been taking B12 injections and also sub-lingual lozenges. Strangly, my symptoms - primarily fatigue - have not improved much, though.

Have you ever had your TSH checked? Autoimmune hypothyroidism is much more common in celiacs than the general population... that could be another cause of your fatigue.

[bobbyj]

Have you ever had your TSH checked? Autoimmune hypothyroidism is much more common in celiacs than the general population... that could be another cause of your fatigue.

Yes, I've had my TSH and Free T3 and Free T4 checked. They were all within range, according to my doctor.

[MaryJones2]

According to another doctor I saw today, a biopsy should conclusively reveal whether or not there is celiac disease.

This doctor is more correct. A positive biopsy will definitely confirm celiac. There are other reasons for flattened villi and the one that comes to mind with B12 deficiency is parasites. Did they just look for parasites or did they run any tests? Often parasites are microscopic and may not be seen on visual inspection.

The other doctor is wrong on two things: not everyone has diarrhea (constipation is just as common), and not all celiacs have iron deficiency.

To comment on your other question about not being deficient in iron or other nutrients. It could be possible. Many of us have one or two deficiencies. Did the doctor check your hemoglobin and ferritin? Hemoglobin is a pretty standard test but it can be normal even when iron deficient anemia is present. A Ferritin test will tell you how much iron is stored in your body. My hemoglobin was always low normal but when someone got around to checking in Ferritin it was 3 (should be 80+).

[bobbyj]

Hello all. It's been a while, but I have now had some 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, based on the tests, I can 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.

[RiceGuy]

Well, I'm no medical expert, but it seems to me that such an elevated IgG should be indicative of gluten intolerance at the very least. Again, I don't have any medical training, but your test results are sooo far above the norm, surely it means something.

Then there's the intestinal damage, B12 deficiency, etc. These are all indicators too.

Have you tried the gluten-free diet? If so, for how long?