B12 Deficiency And Medical Incompetance

[canadianbowlofcherries]

Ahhh! A place that understands- I almost want to cry. I had brain surgery when I was 18 (pituitary tumour) that resulted in a lot of meds before and after. I'm cured of that now- which is of course awesome, but my health never fully recovered. It will be four years since the surgery in December and I've had GI symptoms indicative of celiac disease for about three of those years. At first a doc suggested lactose intolerance. So I gave up dairy, which stopped the symptoms i would get after dairy consumption but I still had GI symptoms. I also would get fatigued and weak/light-headed really easily. I always got the "IBS- take some iron capsules" brush off. Finally, a year ago a doc finally thought to check my B12 level. It was really low and I had to start intramuscular injections right away. Did they ever think to investigate WHY my B12 was so low when I was eating properly- including B12 fortified rice milk? NO. My GI symptoms were still chalked up to IBS. "Oh your college program is stressful- it's just stress!" Yeah my program was stressful but I would have the symptoms even on the most relaxing trips up to the cottage in the school-free summer months- but college got all the blame. And when the shots wear off-which only seems to take a week or so, all my light-headed fatigue comes back. I've almost passed out on the subway before.

So I did my own research. Let's see: 50% Irish Descent, Lactose intolerant, GI symptoms most often at night despite complete diary avoidance and B12 deficiency- gee maybe they should look into celiac disease!?! I finally saw a GI specialist for the first time since all this suffering started. First question out of his mouth? "Are you stressed?" Well who wouldn't be at this point! He started into the old familiar IBS tirade when I interrupted:

" Does IBS cause B12 deficiency?" (pretty much sure of the answer)

"Well No... "

"Could it be gluten related?" (again curious to see what he would finally admit)

"Deificiencies like B12 caaaann be celiac related *looks at chart* OH- you're also quite iron deficient!"

"I want to be tested for celiac disease"

I finally got blood taken and an endoscopy appointment and am awaiting results. It's just frustrating how people are put through years of hell because of medical incompetance/laziness. I know I'm not the only one. And anyone with similar experiences- I'm guessing almost everyone on this board- you have complete empathy from me! I wasn't surprised to learn that celiac disease is one of the most misdiagnosed diseases. I guess brain surgery wasn't the "get out of jail free/good health for the rest of your life" card that I thought it was;)

Sorry I turned this into a novel, but this is the first time I've vented about this in written form. And reading other stories on this site made me feel validated so I hope this might do the same. Anyone suffering from B12 deficiency that no one has ever investigated-- This type of deficiency can cause permanent nerve damage and depression if left untreated. Yes take the shots, but be proactive and push your doctor to find out WHY. Our bodies actually store B12 for long periods of time, so if you are eating normally and still deficient it means you are not absorbing it! I wish I had known this information a long time ago...

Peace.

[Danijela]

Ahhh! A place that understands- I almost want to cry. I had brain surgery when I was 18 (pituitary tumour) that resulted in a lot of meds before and after. I'm cured of that now- which is of course awesome, but my health never fully recovered. It will be four years since the surgery in December and I've had GI symptoms indicative of celiac disease for about three of those years. At first a doc suggested lactose intolerance. So I gave up dairy, which stopped the symptoms i would get after dairy consumption but I still had GI symptoms. I also would get fatigued and weak/light-headed really easily. I always got the "IBS- take some iron capsules" brush off. Finally, a year ago a doc finally thought to check my B12 level. It was really low and I had to start intramuscular injections right away. Did they ever think to investigate WHY my B12 was so low when I was eating properly- including B12 fortified rice milk? NO. My GI symptoms were still chalked up to IBS. "Oh your college program is stressful- it's just stress!" Yeah my program was stressful but I would have the symptoms even on the most relaxing trips up to the cottage in the school-free summer months- but college got all the blame. And when the shots wear off-which only seems to take a week or so, all my light-headed fatigue comes back. I've almost passed out on the subway before.

So I did my own research. Let's see: 50% Irish Descent, Lactose intolerant, GI symptoms most often at night despite complete diary avoidance and B12 deficiency- gee maybe they should look into celiac disease!?! I finally saw a GI specialist for the first time since all this suffering started. First question out of his mouth? "Are you stressed?" Well who wouldn't be at this point! He started into the old familiar IBS tirade when I interrupted:

" Does IBS cause B12 deficiency?" (pretty much sure of the answer)

"Well No... "

"Could it be gluten related?" (again curious to see what he would finally admit)

"Deificiencies like B12 caaaann be celiac related *looks at chart* OH- you're also quite iron deficient!"

"I want to be tested for celiac disease"

I finally got blood taken and an endoscopy appointment and am awaiting results. It's just frustrating how people are put through years of hell because of medical incompetance/laziness. I know I'm not the only one. And anyone with similar experiences- I'm guessing almost everyone on  this board- you have complete empathy from me! I wasn't surprised to learn that celiac disease is one of the most misdiagnosed diseases. I guess brain surgery wasn't the "get out of jail free/good health for the rest of your life" card that I thought it was;)

Sorry I turned this into a novel, but this is the first time I've vented about this in written form. And reading other stories on this site made me feel validated so I hope this might do the same. Anyone suffering from B12 deficiency that no one has ever investigated-- This type of deficiency can cause permanent nerve damage and depression if left untreated. Yes take the shots, but be proactive and push your doctor to find out WHY. Our bodies actually store B12 for long periods of time, so if you are eating normally and still deficient it means you are not absorbing it! I wish I had known this information a long time ago...

Peace.

<{POST_SNAPBACK}>

Hey!

I don't have a B12 deficiency as far as I know. I was just writing to let you know I have a similar experience to yours.

I just spent the last 2 years living in a dorm at a college in Toronto. During that time I had heart surgery... which was suppose to make me into this new better person feeling like a million bucks.... 3 months following the surgery I started finding huge bruises all over my legs. My doctors had no idea what it was from... of course I was terrified... then i started getting these really bad head rushes when ever i stood up. Again the doctors had no idea what was wrong... it then turned into dizzyness, fatigue, many GI symptoms and finally anxiety.... (during all of this i've had anemia)The doctors I seen all tried to tell me it was stress and panic attacks and such... it has become really frustrating because I find they have stopped listenting to by complaints and are passing it all off as some sort of anxiety disorder.... I am now in the process of getting tested for celiac disease and am hopping that it is the case so i can get back to my life. I find I can relate to the experiences of most of the people on this sight with their symptoms and am just praying this nightmare will be over soon...

[Claire]

Sorry I turned this into a novel, but this is the first time I've vented about this in written form. And reading other stories on this site made me feel validated so I hope this might do the same. Anyone suffering from B12 deficiency that no one has ever investigated-- This type of deficiency can cause permanent nerve damage and depression if left untreated. Yes take the shots, but be proactive and push your doctor to find out WHY. Our bodies actually store B12 for long periods of time, so if you are eating normally and still deficient it means you are not absorbing it! I wish I had known this information a long time ago...

Peace.

<{POST_SNAPBACK}>

You are so young! I am much older. Consider yourself lucky if you get a diagnosis now - after only a few years My problems began nearly 30 years ago and only now am I approaching a diagnosis. Now is too late to repair irreparable damage done to the central nervous system. Doctors are a threat to your health - if not to your life. Go gluten-free and don't even inhale a grain of gluten for the rest of your life. Good luck.

[canadianbowlofcherries]

Hey!

I don't have a B12 deficiency as far as I know. I was just writing to let you know I have a similar experience to yours.

I just spent the last 2 years living in a dorm at a college in Toronto. During that time I had heart surgery... which was suppose to make me into this new better person feeling like a million bucks.... 3 months following the surgery I started finding huge bruises all over my legs. My doctors had no idea what it was from... of course I was terrified... then i started getting these really bad head rushes when ever i stood up. Again the doctors had no idea what was wrong... it then turned into dizzyness, fatigue, many GI symptoms and finally anxiety.... (during all of this i've had anemia)The doctors I seen all tried to tell me it was stress and panic attacks and such... it has become really frustrating because I find they have stopped listenting to by complaints and are passing it all off as some sort of anxiety disorder.... I am now in the process of getting tested for celiac disease and am hopping that it is the case so i can get back to my life. I find I can relate to the experiences of most of the people on this sight with their symptoms and am just praying this nightmare will be over soon...

<{POST_SNAPBACK}>

It really does help to have other patients to talk to! I recently read an article that talked about how surgery can sometimes set off your first celiac disease symptoms. Something to do with the immune system firing up afterwards. It does seem a bit co-incidental that I didn't have any GI symptoms until AFTER my brain surgery. And from the sounds of it- maybe surgery affected you too? If you've never had your B12 levels tested it might not be a bad idea to have them done, especially if you're having dizziness and fatigue. B12 deficiency can even cause depression and a lot of patients notice their mood and fatigue improves with B12 shots. (anti-depressant manufacturers sure aren't about to inform people to have their vitamin levels checked!) I know I always feel more energetic when I get my shot. The B12 sereum is pretty cheap too, and as a jobhunting recent graduate trust me when I say this! It's only about 8-10 bucks for a small bottle that lasts for quite a few injections.

Here's to feeling better...

[Merika]

Hmm I wrote a piece on this recently on another thread. Doctors seem to have trouble diagnosing young adults (like 18-25) with anything other than psychiatric trouble. Your story is much like mine (without the brain surgery) but I was 31 before I was diagnosed, almost by accident. i had given up on western docs. And when I first had major trouble with celiac at age 19, the internet barely even existed.....and the bloodtest for celiac still had a year to go before being developed.....oh, yeah, and there were many ignorant doctors

Merika

[canadianbowlofcherries]

The Net has been such a help when it comes to medical issues- must have been terrible without being able to reference things so easily! It was a godsend when I found out about the brain tumour- it's fairly rare and my fam doctor at the time didnt know anything about it. "WOW- i havent dealt with this since MED school!" Comforting. I was 19 when my GI symptoms started too. And without the net I have a feeling I would have been waiting as long as they had you wait because I had many ignorant docs too. That "it's all in your head" business is scary isnt it? I always thought physical causes should be ruled out BEFORE emotional/mental issues are looked into.

[skbird]

I'm one of those who got diagnosed with psychiactric troubles... I was diagnosed as bipolar and was on meds for that for a few years, which made me feel even worse and gain 70 pounds and I even went on social security disability! I can't believe sometimes at how much guilt I felt for being 25 and getting medicare. When all along I was NOT bipolar but gluten intolerant. I can laugh about it now, sort of, but I am furious at how many people in their 20's get the anti-depressant brush off. Now I'm 34 and I'm beginning to get doctors to take me seriously when I tell them there's a problem, but I have to be careful not to tell them I was ever dx'd bipolar because that totally prejudices them.

Oh, what a world, what a world...

Stephanie

[carrielynn]

I'm one of those who got diagnosed with psychiactric troubles... I was diagnosed as bipolar and was on meds for that for a few years, which made me feel even worse and gain 70 pounds and I even went on social security disability! I can't believe sometimes at how much guilt I felt for being 25 and getting medicare. When all along I was NOT bipolar but gluten intolerant. I can laugh about it now, sort of, but I am furious at how many people in their 20's get the anti-depressant brush off. Now I'm 34 and I'm beginning to get doctors to take me seriously when I tell them there's a problem, but I have to be careful not to tell them I was ever dx'd bipolar because that totally prejudices them.

Oh, what a world, what a world...

Stephanie

<{POST_SNAPBACK}>

Amen sister. Amen. I am so sorry you went through all that. It sounds like hell.

I have found that when I check the "anxiety" box on the pre-appointment questionnaire, then the doctors just focus on that. It's taken me awhile to figure that out. Now I am not going to ever admit that I have had (or still have) anxiety problems. Every single doctor (MDs) -- and I mean every single one -- uses that against me and doesn't listen to my complaints about what is going on. I even got this really enthusiastic lecture when I was having IBS complaints (not celiac related) from this doctor who told me I was a "big girl" and I needed to face my problems in an adult way. Etc. etc. I had had these IBS problems for several years, kept going from doctor to doctor. Then I found an alternative doctor who did some muscle testing, performed a procedure on me to treat scar tissue from a previous (abdominable) surgery and I have not had the IBS problems since. (Never mind that I kept bringing up this scar tissue as a probable cause with the MDs, who poo-poo'd it and kept focusing on the "it's all in your head" diagnosis.)

I am NOT a fan of drugs except as an absolute last resort. I'm not against them and support people's choice and right to use them. But I have found that the medications usually do not help me in the long run. If I spend time to investigate, I usually uncover the problem and it usually doesn't require medication.

Carrie

[julie5914]

Yeah, I have always heard that doctors can be age prejudice in that they care more about the yound ones and not the old ones, but I have always had the opposite impression.

They tend to think that since I am young, I must be healthy, and therefore it is nothing they should really look into or "just IBS." Or that I'm crazy. Actually I think a lot of the time, they are just stumped and don't really want to deal with me unless I have something easy like the flu.

[aaascr]

All the docs prior to the ones that considered and diagnosed celiac disease (and

there were many) wanted my gallbladder - I guess

they hadn't had enough of those surgeries in the atlanta area lately.

Mine is still intact, thank you!