Hello everyone,
I'm not one for posting on forums, but I felt an obligation to share my experience because this forum has been the answer to a problem I've been dealing with for the past year.
I am a 59 year old female, generally have been in good health with the exception of Hashimoto's Thyroiditis, Dx in 2009 (by me, ordering lab tests and finding the right doc to Rx meds, no thanks to the many docs who refused to look past the lab TSH test). The combination of insidious onset of Hashi's, along with bizarre menopause symptoms, made it a rough go for a couple years with ever-changing symptoms, some necessitating ER visits and many tests.
I am an RN, not working now but worked for many years as an ER nurse. I have studied nutrition and alternative medicine for many years, attending many seminars, experimenting on myself, and helping others to figure out their health issues. So I am always researching and looking for answers whenever some unexplainable, persistent symptom(s) arises. Sometimes I figure it out quickly, other times the answer eludes and frustrates me as I continue to suffer.
I understand this is a forum for sufferers of CFS/ME. I do not have either, and after reading hundreds of posts of your experiences, am hesitant to post my own because my level of suffering has not come anywhere near what I am reading here. I have had what I call 'spells' on and off for many years, not frequent, but they come--episodes of extreme fatigue (not tiredness) with migrating aches and pains. No doctor has ever figured it out, and neither have I, other than to wonder if it's some simmering mycoplasma or viral infection. At one time I had thought I might have CFS, but the symptoms just didn't quite match. I've also considered the symptoms could be due to my autoimmune thyroid problem. But that is more of a background to precede my more current issue.
About a year ago I started having bowel changes. After a lifetime of constipation, I started having loose movements, which would burn. Rectal itching. Right abdominal pain radiating to the right hip and a bit to the back. When this initially started I almost felt like I had an infection with the fatigue and achiness. The last 2 symptoms went away, but the bowel issues continued so I went to the doctor. He ordered a lot of tests, only one stool specimen for O&P and said he did not know what was wrong. Eventually it improved, only to return a few months later and back I went. This time he said we should do an abdominal CT, so I did. They saw nothing except enlarged uterus, a subsequent ultrasound of the uterus and ovaries was negative. Gastro guy said no evidence of anything, but we should do a colonoscopy. I have put that off, having had one 3 years ago which was fine, as I felt it possible I had some amoeba, protozoa, or other parasite that require more in-depth testing. Meanwhile, bowel problems worsened. I have always avoided wheat except a very occasional pizza, but thought I needed to stop gluten altogether, so became very strict about it. But I realized it was getting to where almost everything I ate was bothering me. I lost my appetite, became afraid to eat anything, lost weight, and lost enjoyment of life as my mental state was not good, very doom and gloom thinking, sure I had cancer, couldn't go out to eat with anyone. It was a dark time for me.
So as usual I turned to the internet to research. I was at a loss what to even look for. I had wracked my brain and knowledge in an effort to narrow down what the problem could be, but felt I was grasping at straws, such as the parasite thing, then cancer, etc. I just felt awful and would cry just from feeling unable to cope due to fatigue and and GI system always in an uproar. Probiotics made me worse, which was unusual, I had always been able to take them previously in large quantities. Now they just gave me terrible gas and pain.
Three or four days ago I came across this forum, and can't even remember how or why I got here. I had already researched certain vitamin and mineral deficiency symptoms that I thought most likely to be the culprit, but was not coming up with anything. Then as I read through this thread, and the absolutely fascinating experience of Fredd and his excellent record-keeping, charts, and graphs, and the experience of others, I was stunned to realize that a B12 deficiency can cause IBS and other GI symptoms. I say stunned, because most of what I've read and learned about B12 deficiency symptoms, rarely is it connected to gastric or bowel problems. But Fredd mentioned several times how his IBS of many years resolved after methyl B12 supplementation. Then as I continued to read, there were posts by others who happened to mention having the same experience with B12 helping their bowel issues.
Since I have cabinets full of supplements, I happened to have some Jarrow SL methyl B12 which I had taken only occasionally, so I followed the directions Fredd gave to hold it as long as possible between the upper cheek and gum so as to maximize absorption. I am not exaggerating one bit when I say that the very next day it was clear a major shift had taken place in my digestion. I actually felt hungry! And each day has improved and I even went out to get a fat, juicy hamburger with fries, something that normally does not even appeal to me. And I ate it, complete with wheat bun, with absolutely no digestive issues. I had been convinced that gluten was the cause of all of it, destroying my bowel and making me intolerant to everything else, but clearly that is not the case. No more mucous, gas, or other stomach/bowel/digestive problems. And the bonus is that my whole mental state has shifted to happier one, and more positive. And I feel I now have motivation, I didn't realize how insidiously this had crept up on me and had gradually adapted to a lower energy/motivation level. It's only after becoming 'normal' that in retrospect I was able to see how bad I was.
And the REALLY interesting part of this is that a few months ago I had asked the doc if we could order a B12 test. Of course he wanted to just do the B12 level, but I had known about the urine MMA test and he agreed to order it (he had never heard of it before) and the results showed I was B12 sufficient! So I just figured that was not the problem and continued to look elsewhere for answers.
It was not until I read Fredd's explanation of why these tests are not an accurate measure of true B12 status that I understood why taking the B12 helped when I had good B12 stores, according to the test.
I am thankful to Fredd and the others who took the time to give details about their symptoms. Had I not read about the B12 correcting bowel and digestive issues, I would have never thought it could possibly be the answer to my problem.
Again, thanks to all who take the time to post and share here because I'm sure there are many like me who are feeling much better due to the wealth of knowledge and experience of everyone here. I am very grateful and thankful I do not have to continue getting expensive testing and doctor visits which likely would have solved nothing.
EDITED TO ADD: I forgot to mention that I started up the probiotics and they are no longer giving me gas. I would love to know exactly why B12 insufficiency caused me to have gas and pain when taking them, and how/what was changed by replenishing the B12 that made me able to take them again without a problem.
