Hi. For the past two years I have been with a heamotologist because of my folic acid and b12 deficiency. I have had a gastroscopy and colonoscopy recently and all normal and negative for celiac disease.
I don’t know what is causing this.
I eat healthily.
I keep having to have tablets and injections.
The past six months I have suffered terrible mid back pain and was wondering if this is related to a deficiency. X-Ray of my back is normal, showing slight scoliosis.
I’m at my wits end.
Anyone been through the same experience or have any insight?
Many thanks
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SLV94
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Any chance of internal parasites eg fish tapeworm. Do you ever eat raw fish eg sushi/smoked salmon?
One sign of potential parasite infection is an increase in level of eosinophils, a type of white blood cell. Result for eosinophils can be found on Full Blood Count FBC (known as Complete Blood Count CBC in US.
Any exposure to nitrous oxide? Nitrous oxide inactivates B12 in the body. Sometimes used as pain relief/anaesthesia in operations.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Also plan to read "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
"I have had a gastroscopy and colonoscopy "
B12 is absorbed in the terminal ileum. It's possible that your gastroscopy and colonoscopy did not examine this area of the gut.
You specifically mentioned mid back pain which is interesting as a few people here have this and as far as I’m aware no one has ever discovered what’s causing it. I have it too and I don’t believe it’s caused by a B12 or folate deficiency. I say that because I was diagnosed with PA 2 years ago and I SI every 2 days and take methyl folate 400 McGregor every day. I also have exocrine pancreatic insufficiency (EPI) and I thought the pain might be pancreatic in nature as I also get the pain under my ribs on occasion. I have a CT, MRI and MRCP and I’m told my biliary tree is clear. The ultrasound of the abdomen showed I had biliary sludge but it didn’t show on the MRI which I find odd. The GI just shrugged! Very unhelpful. I’m having another MRCP so will see what happens. I suggest you have a decal elastase test if you have not had one already. This will show if you’re having any more absorption problems. Then I’d had an abdominal ultrasound and a CT and MRCP.
Not sure that helps you much as you could do all of this and find nothing, like me, and still have the pain. Good luck and let us know how you get on.
As you mention you have mild back pain too (does it reduce with movement?) I am currently looking at Ankylosing Spondylitis - nass.co.uk/about-as/what-is. Which is another autoimmune issue and you have 1 (Pernicious Anaemia) you're likely to have others. As I agree its is interesting what going on here.
I feel that methyl folate works better for me then folic acid. I stay clear of everything with folic acid in it also. I am gluten and dairy free. It seems to help a lot. I take an organic multivitamin with methyl folate and an extra methyl folate tab. Not a Dr, but it has help me a lot.
You sound similar to me I’m 24 as I also have scoliosis too and a blood test was negative for celiac disease but I was not eating much gluten when the test was done & they refused to do a endoscopy or another test after I started eating gluten which nearlt hospitalised me.
As you mention you have mid back pain too (does it reduce with movement) I am currently looking at Ankylosing Spondylitis - nass.co.uk/about-as/what-is...
Then have they bothered to test (they probably have not) for nutritional deficiency: Vitamin D, calcium (the parathyroid would be worth doing too), red cell magnesium, Iron (not just ferritin) , zinc, copper, selenium to name a few.
By normal did you see the results or is that what the GP told you as it generally best to be the middle of the range and some GP seem to overlook borderline low. Also some of the minimums are ridiculously low e.g. B12, based on populations studies (without concern to the population being deficient) and some should not be 1 size fits all as Iron is the only 1 I have seen regularly adjusted for gender.
As it’s better with movement if I was you I would look at Ankylosing Spondylitis have you seen a rheumatologist?
Did you make any changes to you diet between now and January?
I'm narrowing in on my mystery, just like yours, that started when I was 25. My age now is 51. I think i have autoimmune gastritis. Doctors require definitive proof, but my history of deficiency, huge red blood cells, now low white cells, iron anemia, high parietal cell antibodies....all adds up.
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