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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.

B12 Limit Question
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6 posts in this topic

Hello, my earlier post explained that I had accidentally had gluten about a week ago. My symptoms are also telling me that my B12 is also low.

My blood tests always come back as normal but just within the normal range. I also drink too much alcohol about three or four nights of the week and I know that, coupled with celiac disease, hinders absorption. My Doctor won't give me B12 injections because of my blood results.

I have B12 supplements which are 1,000 mcg per tablet. Do you think it would be okay if I took 3 or 4 of these a day? It recommends one on the packet. I haven't taken them for about 5 months.

Thank you. 😴

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There are sublingual tablets that go as high as 5000. I don't think it would do any harm to take a couple daily for a bit. B12 is a water soluable vitamin so you would simply excrete the excess.

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Some people can't get enough B-12 via pill or under the tongue. It just doesn't work for some of us....I had been taking B-12 for years to no avail. Wasting money trying to find one that would help me. My blood levels were always within range , after years of problems & a B-12 level of around 450 ( in reference range) I fought to get my B-12 levels to around 1000...I started out with monthly injections for over a year, my level would go up to around 500 or so. I fought again & went to weekly injections. It took me a year before I ever reached 1000... I have just started bi_monthly injections to see if I'm able to keep my levels at 1000, too soon to tell as yet... But the doc now agrees I don't absorb properly so he is willing & wants my level at 1000 & a constant 1000..

another thing is to check your vit D level...And cut down on the booze.....

Most of us at same time has had to fight with our doctor......

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Some people can't get enough B-12 via pill or under the tongue. It just doesn't work for some of us....I had been taking B-12 for years to no avail. Wasting money trying to find one that would help me. My blood levels were always within range , after years of problems & a B-12 level of around 450 ( in reference range) I fought to get my B-12 levels to around 1000...I started out with monthly injections for over a year, my level would go up to around 500 or so. I fought again & went to weekly injections. It took me a year before I ever reached 1000... I have just started bi_monthly injections to see if I'm able to keep my levels at 1000, too soon to tell as yet... But the doc now agrees I don't absorb properly so he is willing & wants my level at 1000 & a constant 1000..

another thing is to check your vit D level...And cut down on the booze.....

Most of us at same time has had to fight with our doctor......

I've been having the injections of and on for a few years, 3 or 4 injection per year and my B12 level has gone from effectively nothing (measured ~110) to between 900-1000 which is the level my Doctor and I are happy with. It helped me out a bit in the short term (I feel great for a week or two after the injections) but it was the Vitamin D deficiency which caused most of my problems and it's the Vitamin D that is really leading my recovery. With Vitamin D I've been taking 50,000 IU each two weeks for nearly a year and I'm still quite low in Vitamin D (last test a couple months ago was 74) but I'm hoping to be over 100 on this weeks test), we are aiming to hold around 150 on the Vitamin D for several years while I recover. Most people don't need nearly that much Vit D to recover there Vitamin D level if they are simply lacking in Vitamin D.

My eosinophil level was 38% after being Gluten free a few months and 32% a few weeks after starting on the Vitamin D, who knows what it was like while still eating Gluten... it's been very high for a very long time and has caused me to have a tumour develop in my neck. I wasn't far from dying before I stopped eating gluten it so I guess pretty high. I'm hoping my eosinophil count will be lower than 30% on the latest tet I've had since I haven't had one for about 6 months and my health has been steadily improving and my diet has been damm near perfect the last 6 months, 99% unprocessed foods. This can be a very slow and long process to fix your gut... I'm well into my 2nd year gluten free, maybe 3 years already? and still have a long way to go to be perfectly healthy.

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I've been having the injections of and on for a few years, 3 or 4 injection per year and my B12 level has gone from effectively nothing (measured ~110) to between 900-1000 which is the level my Doctor and I are happy with. It helped me out a bit in the short term (I feel great for a week or two after the injections) but it was the Vitamin D deficiency which caused most of my problems and it's the Vitamin D that is really leading my recovery. With Vitamin D I've been taking 50,000 IU each two weeks for nearly a year and I'm still quite low in Vitamin D (last test a couple months ago was 74) but I'm hoping to be over 100 on this weeks test), we are aiming to hold around 150 on the Vitamin D for several years while I recover. Most people don't need nearly that much Vit D to recover there Vitamin D level if they are simply lacking in Vitamin D.

My eosinophil level was 38% after being Gluten free a few months and 32% a few weeks after starting on the Vitamin D, who knows what it was like while still eating Gluten... it's been very high for a very long time and has caused me to have a tumour develop in my neck. I wasn't far from dying before I stopped eating gluten it so I guess pretty high. I'm hoping my eosinophil count will be lower than 30% on the latest tet I've had since I haven't had one for about 6 months and my health has been steadily improving and my diet has been damm near perfect the last 6 months, 99% unprocessed foods. This can be a very slow and long process to fix your gut... I'm well into my 2nd year gluten free, maybe 3 years already? and still have a long way to go to be perfectly healthy.

If you are taking prescription Vitamin D, you would be better served going to the health food store, or event supermarket, and getting D3. The script version is D2, unless otherwise stated. good luck

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Hi no, I'm on 50,000 IU D3 capsules, I live in a fairly dark windy and cold place so the majority of the population are on D3 supplements, the capsules are made locally. Usually 4 capsules brings most peoples level up to 100, just hasn't worked as quickly for me.

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