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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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libbyann

Pernicious Anemia

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I've just started reading the gluten-free forums, I did a search for pernicious anemia and didn't find what I wanted, so I thought I'd ask. I identified wheat as the source of my stomach problems about 8 years ago (one of my doctors later agreed), and then 2 1/2 years ago, I was diagnosed with pernicious anemia. I didn't completely stop eating wheat until recently - I'm a slow learner!

Anyway, I've heard pernicious anemia can be caused by gluten intolerance. So my question is, if I stop eating gluten, will the anemia eventually reverse itself? How would I know? Would it show up in blood work? I know some vitamins can cause harm if you take too much of them, what if I keep taking B12 even if I get to where I don't need it anymore?

thanks,

LibbyAnn

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The body throws off most excess B vitamins so not to worry about that: http://www3.sympatico.ca/vegan_nutrition/vitadise.htm

Iron is another story, you can overdose on it, but I'm taking huge doses of an iron complex and have yet to even approach normal. From everything I've read and experienced, getting vitamin and mineral levels back up to norm is tough initially. I've been at it nine months now and I'm still not there.

Violet

I've just started reading the gluten-free forums, I did a search for pernicious anemia and didn't find what I wanted, so I thought I'd ask. I identified wheat as the source of my stomach problems about 8 years ago (one of my doctors later agreed), and then 2 1/2 years ago, I was diagnosed with pernicious anemia. I didn't completely stop eating wheat until recently - I'm a slow learner!

Anyway, I've heard pernicious anemia can be caused by gluten intolerance. So my question is, if I stop eating gluten, will the anemia eventually reverse itself? How would I know? Would it show up in blood work? I know some vitamins can cause harm if you take too much of them, what if I keep taking B12 even if I get to where I don't need it anymore?

thanks,

LibbyAnn

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I've just started reading the gluten-free forums, I did a search for pernicious anemia and didn't find what I wanted, so I thought I'd ask. I identified wheat as the source of my stomach problems about 8 years ago (one of my doctors later agreed), and then 2 1/2 years ago, I was diagnosed with pernicious anemia. I didn't completely stop eating wheat until recently - I'm a slow learner!

Anyway, I've heard pernicious anemia can be caused by gluten intolerance. So my question is, if I stop eating gluten, will the anemia eventually reverse itself? How would I know? Would it show up in blood work? I know some vitamins can cause harm if you take too much of them, what if I keep taking B12 even if I get to where I don't need it anymore?

thanks,

LibbyAnn

Welcome, libbyann. I'll deal with your questions each in turn.

1. I do not believe that pernicious anemia is caused by gluten intolerance but they are both genetically-based and like gluten intolerance (most of us here call it celiac disease), pernicious anemia may have autoimmune component.

2. If you stop eating gluten, your pernicious anemia will not be affected but you will feel better and your general health will improve. Celiacs even without pernicious anemia are commonly anemic because their damaged small intestine lining doesn't assimilate iron very well, or for that matter, many other vitamins and minerals. If you have celiac diseas and pernicious anemia you have a double wammy problem with iron uptake.

3. "Would it show up in my blood work? How would I know?" Pernicious anemia is caused by the body's inability to produce something called "intrinsic factor". It is an enzyme produced in the gut necessary to assimilate iron. That can be tested for by blood work, at least indirectly.

4. B12 is a water-soluble nontoxic vitamin. You can take gobs of it and it won't hurt you. The excess will be excreted in your urine. People with pernicious anemia have two options: B12 injections or taking huge amounts of oral B12, say 4 mg daily. Recent research shows that people with pernicious anemia have not totally lost the ability to absorb B12 from the diet since there are, apparently, some alternate biochemical pathways for absorbing it that don't require intrinsic factor. However, this alternative pathway is very inefficient so you must consume very large quantities of B12 orally if this is to be a viable option. You will always, always need to either have injections or take huge oral doses of B12. Pernicious anemia does not go away and neither does celiac disease.

Hope this helps, Steve

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My first question would be did your doctor test for intrinsic factor or did he just check your B12 levels? True P. Anemia is caused because your body does not produce the intrinsic factor that is needed to 'get' the B12 into your bloodstream. In Celiacs the villi that are damaged are the same ones that you need to produce the intrinsic factor. For people with celiac or gluten intolerance once the villi heal completely your body will be able to utilize B12 again. This can a bit of time. Whatever the reason for your low B12 levels you will get a lot of benefit from a good sublingual B12 supplement. Make sure it is sublingual that way of delivery bypasses the intestines alltogether and makes sure you get it into your system. B12 is not a vitamin that is toxic in large amounts so that is not a concern, but making sure it is gluten-free is.

Welcome to the world of gluten free living and to the boards.

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. You will always, always need to either have injections or take huge oral doses of B12. Pernicious anemia does not go away and neither does celiac disease.

Hope this helps, Steve

Steve- By oral, do you mean sublingual??

I have pernicious anemia, and after years of bruises with the injections, I now take sublingual B12. It is not huge amounts. I take one tablet a day. My B12 is normal now (with the daily B12). I do not consider a daily sublingual to be a huge amount. I use GNC. They are sugar free, gluten free, and lots of other stuff free.

LibbyAnn- Welcome! You can take injections for pernicious anemia, or sublingual tablets that you place under your tounge and they are absorbed through the mouth instead of the stomach lining. That is what I do. :)

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LibbyAnn- Welcome! You can take injections for pernicious anemia, or sublingual tablets that you place under your tounge and they are absorbed through the mouth instead of the stomach lining. That is what I do. :)

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LibbyAnn- Welcome! You can take injections for pernicious anemia, or sublingual tablets that you place under your tounge and they are absorbed through the mouth instead of the stomach lining. That is what I do. :)

Hi, Tiffany. I love your picture! I miss ballet, too. I have lupus in addition to gluten intolerance, and my joints just won't do plies anymore.

I took B12 shots for a year before I convinced the doctors to let me switch to sublinguals. It took 4-5 hours to go and get a shot, which was ridiculous. Sublinguals are hard to find, though. Sometimes I resort to regular oral supplements when I can't find sublinguals because I don't want to take no B12 at all, but I'm not sure it works as well.

I would suggest GNC. They are in almost every mall! :) They are pretty cheap, and are gluten-free (and other stuff like corn and soy, but I don't pay attention to all of that b/c I am just gluten free).

Also, even if you are not "diagnosed" with the lack of IF, then you can still take sublingual B12 for the health benefits. Like someone else said above, you can't overdose on it :)

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I have Pernicious Anaemia and also Celiac/Gluten Intolerance. Its interesting to hear that many have felt that sublingual B12 works for them - as it didn't for me. I have had to have a year of nearly weekly and painful injections. I take sublinguals between jabs but they seem to do nothing. I have just ordered a B12 nasal spray from my compounding chemist, and will try that and see if that works a little. I just want to add that the blood test for Intrinsic Factor throws about 50% false negatives - so it can be hard to dx autoimmune PA from a more dietary type of low B12 deficiency. Some Drs use tablets as a means to dx the difference although I am not sure if I would want to suffer a year or two - trying to get a dx that way. My Dr was able to dx my PA with a positive Paritiel Cell Antibody result , and my history of 3 other autoimmune diseases and my slow response to sublinguals and other oral B12 supps. Once you start B12 the serum levels may show a false high so symptoms may not match the blood test result accurately. I need my B12 kept >1000 now to even feel half normal - and can still feel my jab when it wears off - usually about day 12 now... 9 this is great - was day 5 , then day 7, then day 8 ... ) I will post back if the methylcobalamin nasal spray works :)

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