Colitis malabsorption--B12 deficiency--Neurological Symptoms

[tommyboywalker]

I haven't been on this board for a while as I have had an extended period of remission for which I am extremely grateful. Wayne, you and the others on this forum helped me immensely! I am gluten free and can now even tolerate a taste of cheese and ice cream on occasion. Woo-hoo!!

Quick backstory. in 2018 I developed a parasitic infection (cryptosporidium) after accidentally ingesting a bit of lake water during my daily swim. It took a while before I knew what it was as I first waited it out as just a bad case of diarrhea. Finally went to a GI doctor and tested positive for the nasty parasite. Oral anti-parasitic treatment cured the parasite in 3 weeks, but left me with Lymphocytic Colitis after an exploratory colonoscopy with biopsies. Remission (budesonide), flare, relapse, remission (budesonide), lather rinse repeat for the first 3 years. Most all of you can relate here!

Fast forward to early 2024. I slowly developed neurological symptoms starting with tingling and some numbness in feet, then tingling in hands and fingers, then shaking in my hands. Eating soup was an adventure Up next was a catch/hook in my voice. I do voice-over work and it was clear in the studio that something was seriously wrong as I couldn't get through 30 second commercials cleanly any longer and I've been doing voice work for 40 years. Next was "drop foot" in my right foot. Add to that were significant "electric shocks" (I call them zingers), Tinnitus became bothersome, some noticeable cognition issues verified by friends and family. There was also excessive sweating in my feet which is mostly autonomic system but somehow related, some depression and anxiety but other factors could be involved with that. Just a general feeling of malaise and fatigue over that time where I lost 48 pounds in a year, went from 213 pounds to 165. Yikes!

The two Neurologists I saw could see on my chart that I had Microscopic Colitis, yet they failed to connect the dots. They diagnosed me with Small Fiber Neuropathy after a skin biopsy on my ankle showed evidence of this and sent me on my way. Not good enough for me as neurological symptoms were devastating. Because of the forum I am posting to today and Wayne's book "Microscopic Colitis" and other research through medical journals, I wondered if B12 deficiency might be my problem?? On my own dime, I had blood testing done at a vetted lab in California. Vitamin D came back very low and Vitamin B12 was at a level that it could NOT be read by their testing....so let's call it zero. Verified this with a test at the lab at my own clinic, no B12 could be found. I started oral supplementation of both D and B12. The Vitamin D has come back nicely from a 21 to a 75 so I'm happy with that. But oral supplementation of B12 didn't really help my symptoms. Sure it increased the level of B12 in my blood serum so multiple doctors said....hey your B12 is okay! But neurological symptoms progressed and got worse. I found a wonderful Functional Medicine Doctor at a clinic in St. Cloud MN. We immediately clicked and became focused in on B12 after she listened to my story.

I started every other day injections of Cyanocobalamin of 1000mcg (1mg) for a month, followed by weekly injections which I'm still doing. Super easy. Fast forward again 9 months and neurological improvement came surprisingly quickly. Every single symptom that I had is gone except for neuropathy in the front part of my foot and that is improved by approximately 50%!! You cannot trust B12 blood serum levels when you are supplementing either orally or with injections as the blood could have a high level of B12 but if you are not absorbing it, it does you no good, it has to be absorbed to be used cellularly. And that was my situation....but B12 injections were the absolute beginning of a new life for me! The plan is to continue to inject weekly to see if the foot neuropathy improves even more. If it does not, (and it might not as that was the first symptom I had and some permanent nerve damage may have occurred) then we will titrate the injection interval to every other week and possibly every other month, to be determined. With suspected B12 Malabsorption/Neurological symptoms, you must treat the SYMPTOMS, not the BLOOD SERUM LEVEL. Cannot emphasize this enough.

The next tests the Neurologist wanted me to have were scans for Multiple Sclerosis. Before we did that, I wanted to give B12 injections a chance. Sure glad that I did! Sorry for the long post, but wanted to check in, express my thanks to Wayne and all of you, and possibly help somebody else who experiences this. Functional Medicine Doctors can be a big help with vitamin deficiencies. Keep in mind that my Colitis was diagnosed in 2018 and it took until 2024 before the neurological symptoms began. It can take a long, long time to use up all of your B12 before neurology symptoms begin.

All the best to all of you. It sure is a journey, isn't it?

[Rosie]

That's quite a story about the importance of B12, and how those of us with MC are much more more prone to B12 (and other vitamin) deficiencies.

I have a somewhat related story, although not quite as dramatic! I have been pretty much in remission with MC for a number of years. I routinely took magnesium and Vitamin D, but didn't take a multivitamin, as it was hard to find one that didn't contain soy, or other ingredients that I can't tolerate. But I thought that I had a pretty complete diet and didn't need a multivitamin. Earlier this year I listened to a presentation about the importance of multivitamins especially as you age, and if you have an IBD. So decided to try again to look for a multivitamin. I finally found a brand that had good quality, active forms of the vitamins, and had a high dose of active B12 (methylcobalamin). As a side note, I had shingles 4 years ago and developed post-herpetic neuragia, with pain and itching that was fairly bothersome. I tried every remedy Dr Google could find, with very little success. Imagine my astonishement, when after about 5 days of taking the multivitamin, my post herpetic neuragia suddenly became much, much less. It didn't go away completely, but what a relief. And I noticed that general itchiness in other parts of my body was much reduced too. So my conclusion was that the B12 component was responsible for the nerve pain relief, although I can't be certain that other components of the multivitamin might be involved too. And I noticed that I had more energy, and generally felt better.

So, like you, I didn't realize that I had a deficiency until I started supplementing and noticed the big difference! Thanks for your personal story, with good detective work and a great outcome!

[Marcia K]

Thanks for sharing, Tommy & Rosie. This group is the best!
I have been tempted to try a bit of ice cream but have been afraid to do so. Maybe I'll try it when we're at the beach this summer and every other person is enjoying it! Maybe just a taste!

[2810CieloGrande]

Rosie, thanks for sharing your story. I have a number of the same issues, and would love to try an effective and safe multivitamin including B12. Would you mind sharing the name of the effective vitamin brand you found? Thanks very much!

[Rosie]

Sure, here is the multivitamin I take:

Manna Liposomal Multivitamin
www.manna.com

It's in liquid form, so you can start out with a small amount to see how it sits with you, and then increase if it's OK. It tastes OK, but a bit strong, so I like to add it to fruit juice, almond milk, or a smoothie. Be sure and check the ingredients for any of your sensitivities. I am gluten, diary, and soy intolerant, and it worked fine for me, but we are all different.

It's more expensive than regular tablets, but worth it for me! I hope it works for you, and that you find it helps.

[Gabriel]

I've also had neuropathy in my feet for many years. Never thought too much about it as my mother also had it and I just assumed it was the normal course of aging. And I have significant (though not debilitating) hand tremor, which was diagnosed by neurologists as "essential tremor." Again, I didn't think much about it because I know any number of people my age and even younger who have it. It never occurred to me to tie it to malabsorption of B12! I understand from you that testing for the level of B12 in the blood is of no consequence and in fact the only way of knowing whether our B12 is depleted is to take the shots and see whether symptoms improve. Did I get this right?

[tex]

Gabriel,

I had the same symptoms. I was diagnosed with "essential tremors" and peripheral neuropathy. My symptoms were so bad that a neurologist diagnosed me with Parkinson's disease 15 years ago. But I started taking the active forms of B-12, B-6, and folate (Thorne Methyl Guard Plus), and it slowly resolved my symptoms. Obviously, I don't have Parkinson's disease. Since most of us have MTHFR gene mutations that compromise our ability to properly methylate (convert into the active form) certain vitamins in our food and supplements, and I know I have a few MTHFR gene mutations, I continue to take one capsule each day of Thorne Methyl Guard Plus. A number of other members here do, also. I'm 83 now and no longer have those neurological symptoms, so obviously, they were a result of a deficiency of the active forms of the B vitamins.

The shots might help you, but because they use the inactive form of B12, cyanocobalamin, they probably won't help you as much as taking a product such as Thorne Methyl Guard Plus, and if you have the same problem that most of us do, your body will only be able to convert a relatively small percentage of the cyanocobalamin into methylcobalamin so that your body can use it. It's much more efficient to take the active forms of the B vitamins (such as Thorne Methyl Guard Plus), so that you are using a form of the B vitamins that your body can actually utilize. As long as your kidneys are functioning normally, you don't have to be concerned about taking too much of the B vitamins, because any excess will be eliminated by your kidneys.

Tex

[Gabriel]

Dear Wayne,
Thank you so much for this important post. I had no awareness of MTHFR gene mutations and different presentations of B vitamins.
My creatinine happens to be rather high: 1.49 the last time it was measured, a few months ago, which at my height and weight translates to an eGFR of around 46, which is low. But I understand that there are different formulations of Thorne Methyl Guard, with greater or lesser amounts of B6 and B12.
Probably the next step should be to take a genetic test for MTHFR gene mutations, which would provide a good indication of how successful Thorne Methyl Guard would be.
Thank you again for this post!
Gabriel

[tex]

I have no idea if this would apply to all of us, or only to me, but when I had a severe magnesium deficiency, my eGFR dropped to 38, and this happened on a couple of occasions (when I developed a magnesium deficiency). After I resolved my magnesium deficiency problems by switching to Doctors Best Brand Magnesium Glycinate, and increasing my dose, my eGFR stays consistently above 60.

Tex

[Gabriel]

I don't remember ever having my magnesium checked. It was probably a mistake.
Here is what Perplexity has to say about the magnesiom-eGFR link:

"1. Advanced CKD (Stages 4–5):
Serum magnesium levels increase as eGFR declines due to impaired renal excretion. For example:
Patients with eGFR 15–29 mL/min/1.73 m² had the highest serum magnesium levels (median 3.0 mg/dL) compared to those with higher eGFR.
Hypermagnesemia (>2.6 mg/dL) is common in late-stage CKD, as compensatory mechanisms fail.
2. Early CKD (Stages 1–3):
No significant correlation between serum magnesium and eGFR is typically observed. The kidneys compensate by increasing fractional magnesium excretion to maintain normal levels.
3. Hypomagnesemia and Renal Outcomes:
Low serum magnesium (<1.7 mg/dL) is associated with accelerated eGFR decline and higher risk of CKD progression (HR = 1.20).
This contrasts with advanced CKD, where hypermagnesemia predominates, suggesting magnesium's role varies by disease stage."

No. 3 seems to be the relevant one here!

[tex]

It certainly was in my case. I suspect it's the problem in many cases, but doctors fail to recognize the importance of magnesium In general, and don't have clear guidelines for diagnosing magnesium deficiency, and therefore their unlucky patients eventually wind up with advanced CKD and eminent kidney failure simply because they had a magnesium deficiency.

Tex

[Gabriel]

Thank you for this information. I see that Doctors Best Brand Magnesium Glycinate has 50, 100, and 200 mg tablets and caps. What should be the daily dosage and how should it be taken?

[tex]

I eat two meals per day. I take one 100 mg magnesium capsule after each meal, and one right before bedtime, for a total of 300 mg Of supplemental magnesium per day.

Tex

[Gabriel]

This seems like a lot. How did you determine this dose?
Also, are all magnesium supplements equal or is there something special about Thorne Methyl Guard Plus?
Sorry I'm asking so many questions but I'd like to make the right decision up front.
Thank you.

[tex]

The recommended daily allowance (RDA) for magnesium in the U.S., according to the National Institutes of Health (NIH) is 420 mg per day. Many authorities agree that about 70% of the world's population is magnesium deficient. MC depletes magnesium, budesonide depletes magnesium as does all other corticosteroids, many foods and beverages deplete magnesium, including coffee and tea, for example. Most foods today contain only a fraction of the amount of magnesium I was in the foods that our grandparents eight, primarily because of magnesium depletion in soils due to centuries of cultivation and food production. MC patients (and IBD patients in general) need much more magnesium than the general population. When our disease is active we may need up to twice the RDA to satisfy our needs and keep our immune system working properly. If you're interested in learning more about the immune system benefits of magnesium, I've written a book called "Why Magnesium Is the Key to Long-Term Health", that discusses all the details of why magnesium is so important for our health, despite the fact that the medical community doesn't even have magnesium on their radar when trying to diagnose disease. Magnesium is associated with every known disease to medical science. The book is available on Amazon or at any other bookseller.

Yes, there's something special about Thorne Methyl Guard Plus. It contains the active forms of the most important B vitamins.

And yes, there's something special about Doctors Best Magnesium Glycinate. Magnesium glycinate is the form of magnesium that's the easiest to absorb and the least likely to cause diarrhea for MC patients. And Doctor's Best brand of magnesium glycinate is a safe brand that doesn't contain any allergens that affect MC. There are other safe brands on the market; just be sure to carefully read the label so you're not being exposed to trace amounts of allergens.

Tex