[zeeclass6]

Originally Posted by pabb

not enough in most B complex tabs/caps to matter...you are apparently not absorbing as well as you were....consider celiac disease...good luck

Thanks. I got tested for celiac about 12 years ago (full blood test for all markers, or whatever you call them) and it was all negative/normal. But who knows...I've been having a more difficult time with my lactose intolerance lately, so I suppose it would not be out of the question to get another celiac test to see whether something has changed in my gut. I do eat a lot of wheat and other whole grains, but have never noticed any overt symptoms of trouble with gluten. Only dairy gives me a direct problem....thank God for Lactaid pills and Lactaid milk!

I will ask my endocrinologist to add the celiac test to my next lab slip. Specifically what should be tested (what should I ask for)? I want to make sure that the test is complete.

[mrsD]

I have found as I aged, that I developed lactose issues too.
Not severe, but I do use the Lactaid milk and avoid Ice Cream.
I can do cottage cheese and yogurt in moderation.

But what really can upset me majorly is fructose! I get terrible gas and other more extreme reactions from this so I have to avoid sugar almost 100%. If I have a small bit with other food it seems I can have a treat now and then (chocolate). But no fruit to speak of, or sugared drinks. Gatorade will send me to the can within an hour. I can tolerate an orange a day, if it follows a meal.

I also followed a gluten free lifestyle for about 3 yrs and found it did not help me very much. It was the fructose avoidance that helped me the most.

[glenntaj]

--be sure to have them titer your anti-gliadin IgG and IgA (the former is the most sensitive, but least specific test to see if you are making antibodies to gluten, and is often associated with non-celiac gluten sensitivity); the anti-transglutaminase IgA and IgG (the first being the most closely associated with celiac that would have progressed to the point of degeneration of intestinal villi); and total IgA (some people have deficiencies in this and it skews the result of the other tests).

There are some more advanced tests in the pipeline that are supposed to be more specific, but I've yet to see them appear at standard labs. The Gluten File discusses this, and lots of other things--it is an excellent resource:

http://sites.google.com/site/jccglutenfree/

Many of us develop absorption problems as we age--you may not have any gluten problems and may be suffering from lack of intrinsic factor to break B12 out of food, and that should be investigated as well.

[zeeclass6]

Thanks for the very useful link and the info!

If my doctor doesn't want to test me for these, I will find one who will. I just don't want to leave any stone unturned at this point. I want to make sure that the B-12 problem isn't just the tip of the iceberg. And above all, I want to feel better!

Can B-12 deficiency or gluten problems be implicated in chronic pain syndrome? I DON'T have fibromyalgia, but it seems like my back, neck, and shoulders always hurt and takes forever to feel better. And recently I developed a problem with my big toe joint that is also taking a very long time to heal. It seems that I feel pain very acutely, and when I feel it for more than a few days in a row, I wind up getting very depressed from it. So I wonder if there is some biological reason for this, other than "you don't have enough seritonin."

I'm a person who likes to watch the show "Mystery Diagnosis" because I keep wondering if I'll stumble upon a cure for these annoying problems I keep having with pain and depression.....

Originally Posted by glenntaj

--be sure to have them titer your anti-gliadin IgG and IgA (the former is the most sensitive, but least specific test to see if you are making antibodies to gluten, and is often associated with non-celiac gluten sensitivity); the anti-transglutaminase IgA and IgG (the first being the most closely associated with celiac that would have progressed to the point of degeneration of intestinal villi); and total IgA (some people have deficiencies in this and it skews the result of the other tests).

There are some more advanced tests in the pipeline that are supposed to be more specific, but I've yet to see them appear at standard labs. The Gluten File discusses this, and lots of other things--it is an excellent resource:

http://sites.google.com/site/jccglutenfree/

Many of us develop absorption problems as we age--you may not have any gluten problems and may be suffering from lack of intrinsic factor to break B12 out of food, and that should be investigated as well.

[glenntaj]

--who have chronic pain, typically neurologic pain, from B12 deficiency and/or gluten sensitivity.

B12 deficiency is one of the great masqueraders, but over time, if left untreated, it can affect every system in the body. It is fortunate that, if properly diagnosed, it is easily treatable. But recovery may well depend on the degree of damage experienced before the diagnosis and beginning of treatment.

BTW, that big toe joint problem should probably also occasion an investigation into gout.

[Katanya]

Please help! Newbie, please read profile, mom had Pernacious Anemia, feel tired all the time, swollen tongue on empty stomach, gluten problems, hematocrit levels always off, enzymes and alkaline phosphate off, feel better for short time with spinach and kelp! History of infertility, does thus sound like Pernacious Anemia?

[mrsD]

Welcome to NeuroTalk:

I think you should start with some tests at the doctor.
B12 for sure, and Vit D.

Many doctors call very low results "normal" because the lab ranges have not changed for B12 and hence are outdated. Please read this thread to understand how to interpret and choose a B12 supplement.

If you have gluten issues, you may not be absorbing many other nutrients. But start with the B12 first, as it is very common to be low in people with gluten intolerance.

Infertility can be from PCOS, or high consumption of trans fats (this is new information) from the diet. Being underweight also can contribute. I'd start with the vitamin testing to see where you are at, and go from there.

[pabb]

infertility can also be related to celiac.

[mikotoe]

Hello MrsD,
I'm hoping you can offer a bit of insight...

About two years ago I was diagnosed with low platelets, and what I thought was a back injury, Though several mris did not find anything unusual, about 6 months later I started to get intense numbness in my legs. Several doctors later I was diagnosed with B12 deficiency by my neurologist, I was treated with Cyanocobalamin shots twice a week, then once a week, then once a month for about a year, my neurological symptoms improved from when I began treatment, but hasn't completely ceased and tents to come back towards the end of the month (before the next injection is administered). I was getting my monthly shots from my primary care dr. but when I became pregnant, by dr. wanted to check my level first, then referred me back to my neurologist.

My neurologist referred me to a gastroenterologist who diagnosed me with positive antipariatal cells and he told me I didn't have the intrinsic factor, I was also checked for celiacs disease, which was negative.
The Gastoentologist gave me an injection of cyanocobalamin but It had been about two months since I had a shot, and I was 7 weeks pregnant. At 9 weeks, I miscarried. I am now reading that B-12 deficiency can be linked to miscarriage. While at the dr. I asked about a prescription for methlycobalamin injections but he wasn't familiar with them and gave me a prescription for cyanocobalamin injections 1000mcg once a month.

Two months later, I am pregnant again, now 5 weeks, I have been taking the cyanocobalamin injections monthly, as well as 1000mcg sublingual b12 tablets daily. I had my injection a week and a half a go, and now my legs are already starting to feel numb again. I'm very concerned that I don't have the proper amount or type of b-12 to have myself or my baby be healthy. so my question is this:

What is the recommended dosage of B-12 injections for pregnant women who are unable to absorb the vitamin in their stomach?

Where can I acquire Methlycobalamin as an injection?

If I can't get the Methlycbalamin as an injection, will the methlycobalamin sublingual tablets be helpful to someone who cant absorb it via stomach?

Is it possible that although I have been on a treatment plan that I could still be deficient due to getting cyanocobalamin instead of methlycobalamin and do I need to make up for that?

Are there any doctors you would recommend in the NYC area who specialize in b-12 issues?

Thank you so much for all of your posts, already I realized I have been taking my sublinguals with food, when I should be taking them without!

I would appreciate your insight into these issues, I would love for my neurological issue to be resolved, as well as to have a healthy pregnancy.
Thank you!
Holly

[mrsD]

Welcome to NeuroTalk.

I think you should skip the doctors and injections...they are certainly not helping you properly.

Get your B12 level measured when you think the shot has worn off so you know what that level really is. Get the numbers and post here.
If in another country, post the nmol/L so I can convert them to US figures.

You CAN establish good blood levels easily with ORAL methylcobalamin, and taken every day on an empty stomach.
It WILL work even when you have no intrinsic factor.

Getting shots once a month with no testing to show if that is working for you is just sloppy, and makes assumptions that all people are alike.

There is a methylcobalamin injection, but they are compounded at compounding pharmacies and will cost more. I believe they have a short shelf life also, once made up.

Babies can be born to B12 deficient mothers, but do not do well and have neuro problems. I'd get the B12 test ASAP if I were you.

It is your decision to stick with doctors who are not treating you adequately, and take control yourself with oral. Many doctors do not believe that oral works...and they are wrong. Studies show it works. But you have to take a high dose like 5mg a day and only on an empty stomach for best results. Passive absorption takes place without intrinsic factor only in high doses.