51 replies to this topic

[floral]

I also have malabsorption issues and take Vit B shots. I have noticed that my B12 levels are too high when my MD checks just after I've taken a shot. Perhaps timing is everything in this case. P.S. I don't feel that the shots are effective anymore. They used to make me feel better and have more energy. They say I'll have to take them for the rest of my life but I beg to differ.

[ravenwoodglass]

I also have malabsorption issues and take Vit B shots. I have noticed that my B12 levels are too high when my MD checks just after I've taken a shot. Perhaps timing is everything in this case. P.S. I don't feel that the shots are effective anymore. They used to make me feel better and have more energy. They say I'll have to take them for the rest of my life but I beg to differ.

Why is your MD testing you right after you have had an injection? He should be checking before the test. Or is a different doctor doing the injections? If that is the case tell your MD so he can schedule a test before you get the shots.

[cavernio]

Many, but clearly not all, of us have made the assumption that we are low on certain vitamins and minerals without ever being tested. When you think about it, it is really not a smart way for us to approach supplementation.

Because our digestive systems are proven damaged and most nutrients come from our food. Besides which, many doctors approach supplementation in much the same way, in that they won't actually test you and instead 'try things out'. If I could measure my nutrients daily I would, but I can't. I can't get them measured monthly either. If I feel bad and I cajole my doctor I MIGHT be able to get more than just my iron and b12 levels tested.
Oh, and even if I get tested, they'll tell me my b12 is fine when it's well below 500, because here it's low only if it's under 120 or something.

[sandsurfgirl]

Personally, I really HATE reading posts like this because they could actually harm someone if they actually have vitamin deficiencies and read the original post and just stop taking their supplements. Since you are not a medical professional, it may have been better to add that supplementing vitamins should be done with your doctor's knowledge and blood tests to monitor vitamin levels rather than to suggest that someone discontinue a supplement they are taking. Especially if they are taking it because they were instructed to by a doctor for an actual deficiency. Because those mega doses of b12 that you are so hard on are the only thing thing that is keeping me from becoming anemic and stops the neuropathy due to the deficiency.

1. The original poster DID say check with your doctor.

2. Anyone who would stop their supplements just from reading one thread here is a ding dong.

3. Doctors don't know much about supplements. I was really sick from supplements and THREE doctors shrugged their shoulders and said "I dunno. I dunno. Duhhh." A friend from this board said it was likely the large doses of iron I had been taking for a month of pure hell. I stopped the iron and hey! I wasn't vomiting my guts out every single morning and afternoon.

4. We ALL give each other advice on this board. That is the POINT of the board. I would guess that it is assumed that we are not doctors and that you take the advice as patients trying to help patients. Do we really all need to put disclaimers on our threads now? Is this what we have become as a society?

[new2celiac2k12]

I think most of what this is has led to frustration, and just because someone reads a post that gives advise on to stop taking this or that, the person not understanding this is the OP's opinion in their case, maybe not be everyone's situation, but to look for it, that's all.

One thing I do now is this: My family doctor knows absolutely nothing about celiac, the only thing he knows is it's diet related, they don't offer much, they then back off as they are not specialized or have any experience with Celiac, it was information in this board that had more of the concrete info, correct testing, correct diagnosis, and patient experiences, this board is where my gastroenterologist sent me for info.

I was looking into B Vitamins, and glad I found this, thanks for posting, it is something to be knowing about....

Last January I had a situation where my chiropractor told me I had a gal bladder problem.
My family doc took it personal when I said " chiropractor " and he felt that I did not take his consideration in not worrying about my gal bladder, after an ultra sound, it showed my GB to be enlarged, but they found nothing else to be worried about, so they said nothing found.

Five months later, I go back to my fam doc, and after finding info from this board with a Hida scan, I tell my fam doc he better make sure his original diagnosis was final, as I was recently layed-off from my job and my insurance was running out at the end of June, so he says what do you want to do, I said a Hida scan, he says why, I still have had issues with being gluten free and having stool issues, so he agree's to the Hida scan, and after the results, we find my gal bladder was only working 1 percent of the time!

So the moral of this story here, many of us deal with family doctors that don't know how to handle patients with Ceiac, they don't do the proper testing, and then we find the best possible info is on this board.

Sorry for my long winded post, but this board has been the best of in the most valuable information, where my family doc plays a game not believing I had a GB problem, and it was only 1 percent.....

[Bubba's Mom]

It still makes me mad that I suffered with really bad gallbladder pain/nausea before I was DXed Celiac. I got an ultrasound which showed no stones, and from then on my comlaints fell on deaf ears. My Dr. actually yelled at me "there's absolutely nothing wrong with your gallbladder!"
It's shocking to me how many Dr.s don't think to order the HIDA scan! When I got my test results back I wanted to go back to that stupid Dr. and smack him over the head with the results.

I'm glad you knew what test to ask for. We can't just rely on the Dr.s to have all of the answers. It's good that we share here.

[GladGirl]

Although this thread is a little old, I was glad it was here! I just came back from my new Dr's office and found out that I have over-supplemented Vitamin B12. I have some "toxic" side-effects, mainly "joint pain" popping up in my extremities. The Dr. and I both think because excess Vit B12 can be stored in the liver, and my major issue with Celiac has been my liver enzymes, this may be causing the problem. At any rate my liver enzymes are almost normal now!! They were well over 100 and now to 40 on AST and 42 on ALT. Whew!

So, on this information provided, please do make sure as you supplement that the Dr. is testing appropriately and you let them know any possible side-effects you are experiencing. (I thought somehow, I had been glutened, thankfully not the case)

As my body is still continuing to heal, my glucose is good, my cholesterol keeps jumping around...lol! This time my LDL was lower, my HDL higher, but also my triglycerides were higher...ugh.. In the meantime, I sure have been sleeping better and no pain in my right side anymore!! (last night I slept for 7 hours straight!) It has been over 12 years since that has happened.

Oh, and the many recipes here are so helpful, I even have my neighbor, who loves to cook making some of the special treats for me!!