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Celiac Disease And Vitamin B Deficiency


Guest Eagle

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Guest Eagle

Hello, The enterolab results showed that I got celiac genes from both sides of my family and the stool sample allowed the Naturopath to diagnose me as a celiac. Unfortunately my other doctors, gastroenterologist and general practioner refuse to accept the enterolab results as valid as the celiac blood panel didn't show it up. I ended up in the hospital with a burning neuropathy and as they didn't believe what the cause was I was treated with an antianxiety medication and kicked out of there. It is looking that I am deficient in some B vitamins. Has anyone else with celiac had this type of B vitamin deficiency like thiamine and others? Most likely my doctor will now try to prove that I am an alcoholic even though I am not and all my liver & other tests support that. While I was sick in the hospital they sent a psych guy in to question me and on my release report the diagnosis was somatization disorder.


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gfpaperdoll Rookie

Most of us take at least a B12 everyday - for life. Even if you test okay for the B12, it is the opinion of some of us (& I think substantiated by some reports) that the standard for the B12 level is too low.

Gluten can affect you mentally. Once you are gluten-free I think you will notice that the brain also "becomes more clear" and I notice that once gluten-free one is not as emotional with the ups & downs etc.

Once you are gluten-free and doing better, you probably will be too busy having fun to bother with those doctors...

RiceGuy Collaborator

There are numerous nutritional deficiencies which can accompany Celiac. Because of the damage to the small intestine, any number of nutrients may not be properly absorbed. As many others on this board, I did eventually begin taking a B12 supplement, and also magnesium. Both of these along with others might help you, though you'd probably have to try some things and see. From what I've read, not all deficiencies will necessarily show up on blood tests.

Be assured that you are among many here whom have gotten such rotten diagnosis from the medical community. I do hope you regain your health, and I have quite a bit of confidence in the members here to help guide you in that regard.

Lisa Mentor

In addition to those answers....Long term use of antacids hinders the absorption of Vit B-12.

Ursa Major Collaborator

Eagle, I think it is time to look for another MD. Obviously this one is a moron. What an insult, wanting to prove you're an alcoholic! And giving you a diagnosis of SD is saying that it's all in your head (another insult). Many of us have heard that, of course. I am glad you have a sensible naturopathic doctor.

I don't know if your naturopath can order blood work to find all your deficiencies. If not, there would be another good reason to find a new MD.

In the meantime, take a good high potency vitamin B complex (buy it from your naturopath, to make sure it is the best), as taking one B vitamin in isolation isn't a great idea, they all work together. From what I have read I believe it is especially vitamin B6 that is needed when you have neuropathies.

You should also be tested for levels of vitamin D, magnesium, calcium, ferritin (iron), vitamin K, and a bone density scan is also a good idea.

I hope you will feel better soon.

The One Apprentice

I was wondering about this too, I have diabetes [unspecified type] but I have had it for a very short time [8 months] and at 5 months of being diagnosed with it I developed a Peripheral Neuropathy, they said it was from diabetes, now I have tested positive for gluten sensitivity and I believe the neuropathy has more to do with gluten than diabetes. Do these things go away if caused by Celiac? I will definitely look taking into B vitamins too.

darlindeb25 Collaborator

If you do not take any other vitamins, you should at least take B12. B12 is the vitamin for neuropathy, B6 sometimes helps too. B6 helps raise your serotonin. B12 deficiency is one cause for neuropathy. I take 2400mcg of B12 daily, plus a good multiple vitamin, and folic acid. I plan to add a B-complex this week, having just found out I should be taking more B vitamins.

I was taking 1200mcg of B12 daily when I had a blood work up done, my B12 came back at 1277, which is a good level, but only there because of the B12 I was taking. As someone said, most celiacs need to take B12 for the rest of their life. I feel that I will probably never absorb properly and will always take vitamins.

I do have neuropathy, full body. Some celiac's do find that once gluten free for a time, their neuropathy seems to recover. Just depends on how much damage was done first. Good luck.


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ravenwoodglass Mentor
I was wondering about this too, I have diabetes [unspecified type] but I have had it for a very short time [8 months] and at 5 months of being diagnosed with it I developed a Peripheral Neuropathy, they said it was from diabetes, now I have tested positive for gluten sensitivity and I believe the neuropathy has more to do with gluten than diabetes. Do these things go away if caused by Celiac? I will definitely look taking into B vitamins too.

Get yourself some sublingual B12, gluten free of course, today.

Not only can celiac cause the nerve problems you have it is also most likely a strong contributor to your diabetes. I also had doctors thinking I was a drinker because of elevated liver enzymes. Especially since I have ataxia as well.

I have been gluten free now for 5 years and other than still having moderate ataxia the nerve problems are gone. I have also had my diabetes under control without meds, and the doctor said it couldn't be done but I insisted as metformin's black box warning symptoms are the same as a severe glutening. Well long story short it is almost a year since the diabetes diagnosis and my morning sugars are now never over 90 and usually between 80 and 85.

Hang in there and get as much knowledge as you can about celiac. I should note that I didn't notice a lot of improvement instantly, it took time and also a lot of searching for non-food sources of gluten as well

Welcome to the boards and I hope you get some relief soon.

The One Apprentice

ravenwoods - hopefully I'll be able to get checked for vitamin deficiency if doctor listens but I'm not getting my hopes up, I will look into B vitamins on my own and hope for the best.

I think the problem with my diabetes was that we caught it when it was just starting to give me highs and in a matter of months it went over 400 but doctors thought since it wasn't so high it was type 2, either way I could often manage it by diet but that is no longer a choice, I'm taking metformin also, they put me on a high dose of 2000mg a day but I can't stand to take that with Celiac because eating enough to make up for the pills seemed impossible as I was always sick with some stomach disturbance. Now I am starting to eat more and can take that dose but still having a few lows [not nearly as many as i had while i was eating gluten] But I think with time I will be able to manage it by diet hopefully.

Calicat Newbie

Eagle,

I was diagnosed with Celiac about a year ago. Along with a severe B-12 deficiency, I've also had deficiencies of the other B-vitamins, specifically B-1 (thiamine) and B3, so it is definitely possible. I also have ferritin, iron, and vitamin D deficiencies, all of which I'm currently working on improving. Know that there are other people out there fighting the same fight! You're in good company.

I'm sorry that doctors have been so terrible with you. I've had similar experiences with them too. I really hope that you find someone who has some compassion and that you start to feel better. :)

Best wishes,

Cali

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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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