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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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Can anyone comment on this .....what's your experience with this? Do they help the depression and/or neurological symptoms? Anyone get them regularly? If yes, how often is recommended?

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I get the B12 shots once a month now (I started out getting them every 2 weeks - I'm still at 1000mg but started out at 2000mg) and it took about 2 months of 1 shot per every 2 weeks before I started getting better - I still have the exhaustion and stomach symptoms but the tingling sensations in my feet and hands has improved (I still feel the pins and needles slightly on certain days, but overall things have improved) and my balance is also a bit better...

I think that recommended dose is dependant on low your B12 is - my level was 150 and the normal level starts at 243 or something (???)...My levels have gone up to 278 now, so I'm in the low normal range finally :)

Were you diagnosed with a B12 deficiency?

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I have wondered about B12 shots also, especially for one of my boys. He had 70% + of his small intestines removed at 6 days old, including the part that absorbs B12. We were told from the very beginning that B12 shots would be a necessity for him, because of the short gut. He has been tested regularly for vitamin deficiencies and has not had problems that needed to be treated (according to the tests at least) yet. He has taken supplements his whole life and will always take multi-vitamins at least. We have all been taking royal jelly (good source of B vitamins) recently. Does there need to be a noted defficiency, in order for the B12 shots to be ordered ?

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I don't think a documented need is required for B shots for this simple reason: My sister in law and mother in law, who are not celiac, at least they've never been tested and I have a suspicion that my sis in law is celiac disease, but anyway they've been getting the shot from their G.P. for about 10 years now. Their complaint is that they are tired and he gives it to them. My brother who is not celiac disease has been getting the shot for about 8 years now but that's because he has neuological symptoms (numbness in legs) and it's apparent he's deficient, but he didn't have a blood test informing him of any deficiency.

I am trying to get my celiac disease husband to get the shot and I need the support of others with celiac disease - this way when I say to him, see others with celiac disease get it and it helps them, he'll do it. He won't do it if it's just me suggesting it to him, even though his own sister gets it for less of a reason than he would.

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Guest shar4

Hi all,

I haven't posted in a while, but feel compelled to add my 2 cents worth. I started getting the B12 shots in December, and was getting them weekly for a while to try and boost the level. Then every other week, and now monthly. The level hasn't gone up dramatically, but I feel soooooooooooooo much better, I cannot fully comprehend how bad I was before I got the shots. That stuff is incredible. :P Plus, I only recently found out that my insurance is helping to pay for them, which is cool!!!

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Guest shar4

I forgot to say that I no longer have the numbness in my feet like I was having before I was diagnosed, yet another B12 bonus!!!

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    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
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