MS and Vitamin D Decrease

by Debbie
(Portland, OR)

I have MS and up until my last Vitamin D check it was running in upper 40's, this last time it was 25.5. My Doctor said I needed to take Vitamin D supplement and gave me option how much to start with. I chose to start with 2,000 units and increase based on next test in 4 weeks.

My question, how can Vitamin D level drop so quickly from upper 40's to 25.5 in less than a year? I have asked for bone density test to see where my baseline is. The MS has not been kind; I was diagnosed at 50 in 2010. I'm not that mobile, both bone and nerve pain.

Is there a connection between MS and Vitamin D?

Comments for MS and Vitamin D Decrease

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Not sure why you would think it would stay high
by: Kerri Knox, RN- The Immune Queen!

Hi Debbie,

I'm not sure why you would think that you would have normal vitamin d levels after not taking it for a year. It's a nutrient that you need to get on a regular basis. People get the diseases of Beri-Beri and Kwashiokor after not getting certain B vitamins for long periods of time. Sailors get scurvy after not having vitamin c for several months, you get dehydrated if you don't drink water for several days and you get vitamin d deficiency if you don't get vitamin d. Would you be shocked to find that you lost weight if you didn't eat for a month?

I'm unsure why you would think that you can not take vitamin d for a year while living in Portland and that your vitamin d would be normal.

Kerri Knox, RN

Yes, Drop in Vitamin D Meant Something
by: Debbie

Kerri & All,
I followed up with having a bone density scan because of the drop and other reasons; post-menopausal and I wanted to get baseline of what my bone density is right now. I just found out the results, I thought I would be normal since my frame is on the large side but I was wrong. My T-Score is -1.3 which as you know means osteopenia or pre-osteoporosis.

I'm only 53 years old, this also surprised my primary physician. I see Orthopedist today about pain in hips and ishium bones. My body 100% of the time tells me when something is wrong. Stroke symptoms twice, transverse mylitis, and 13 bands from the CFS test gave indisputed proof I had MS. Yellow tongue on four different occasions ended up being sleep apnea. And now drop in Vitamin D and pain have shown ostepenia.

I would love to be wrong; but when my body speaks I listen.

You have MS, that's what causes Osteopenia
by: Kerri Knox, RN- The Immune Queen!

I'm very confused as to why you think that you developed osteopenia in only a year's time or that the drop in vitamin d 'signaled' this. The drop in vitamin d AND the osteopenia are a RESULT of the same thing, which, almost certainly is due to: inactivity and less weight bearing and less sunlight exposure due to your disease processes (specifically MS).

Vitamin D is a NUTRIENT. You have to GET vitamin d for your levels to stay up. Both osteopenia and decreased vitamin d are consequences of not doing the things needed to get vitamin d.

Also, MS and Vitamin D are related, and developing MS is almost certainly due to having decreased absorption in your digestive tract due to Gluten Sensitivity which will lead to decreased absorption of magnesium, vitamin d and calcium- all necessary for strong bones.

I think that you are getting your causes and effects mixed up. Gluten sensitivity and leaky gut syndrome along with poor eating habits led to your MS, which caused you to get less exercise and get out in the sun less, which caused both your low vitamin d and your osteopenia. All of your disease processes are related. They are not distinct separate events that are unrelated to each other as it seems to be that you are suggesting.

You, of course, are free to believe anything that you want to, but you asked my opinion and that is my take on it from many years of experience studying and working with those with chronic illness.

Kerri Knox, RN

How Do You Know What Causes MS?
by: Debbie

Kind of interesting how you think as an RN and not a Neurologist - MS Specialist, you have any idea of how MS is caused when it's not been proven, just possibilities by the medical community. I think mine was caused clear back when I was 6 1/2 years old and had hard measles; which by the way IS one of the possible theories as to what might cause MS. It can sit dormant until just the right circumstances bring it to the surface.

That's why it's so hard for some people to get a definite diagnosis of MS; mine was easy. As I think back there have been times when things happened that were unexplained; things where my MS was peaking out to see if it was time to make its presence known. Mine just waited a long time and it's hit me really really hard.

As to my diet; I have ALWAYS eaten healthy my entire life; fast food maybe once a week if that. Right before my first symptoms appeared in September 2009 I was in the best health possible; working outside, doing sports, on WII Fit Plus my age was 19 or 20. I have never been overweight, never smoked or drank. Sometimes I think I ended with everything I have because I was good. My brother on the other hand has eaten lots of fast food, smokes, drinks and has no health problems. I know genetics play a part for some of my conditions.

I am one of those people that do research when I don't know or have questions about something. I like to be well-informed. Sometimes I ask what I feel are professionals that might be able to help me. I have subscription to JustAnswer.Com; best money spent and lots of doctors, nurses and specialists who always answer my questions, and can ask a lot of questions. I happened upon this website on one of my Google searches and thought maybe you'd give me helpful information, which I'm sad to say have not.

It seems to me you have tried to belittle me, and how can you say you're the "Immune Queen"? but that's just my opinion. You didn't really try to answer my question which was a legitimate one where I was looking for answers. I just wanted to know why Vitamin D can drop so fast. I don't know where you got the idea I took Vitamin D a year ago or had bad eating habits, it was just recent that my doctor ramped up the amount of Vitamin D I take based on my last blood tests. I have always taken a multi-vitamin that contains 400 mg of Vitamin D; no other supplements.

Please think before you write. To me, you're just writing off the cuff with no regard to a person's feelings. When someone writes you they can be concerned about what's happening to them, to say the least. I'm sorry to have to make these comments, but it's how I feel.

Don't think like an RN or a Neurologist
by: Kerri Knox, RN- The Immune Queen!

Hi Debbie,

I never meant to belittle you. But I actually don't think like an RN. And neurologists have no answers on how to get better from MS, so I thank goodness that I don't think like a neurologist.

I actually think more like an alternative gastrointestinal immunologist than anything. And I actually 'did' answer your question (and you continued to answer it). You almost certainly were more active and getting outside more before you got your MS, now you're not. That's the answer that I gave and, essentially, that's the answer that it seems that you are also giving me back. Again, I ask why you would NOT expect your vitamin d to drop in an entire year's time if you are only taking 400 IU's of vitamin D when 400 IU's of vitamin d is an absolutely insignificant dosage? The 'average' Vitamin D Requirements are around 3500-5000 IU's a day. So, you're taking 1/10th of a maintenance dose, yet wondering why you have low vitamin d levels. I'm TELLING you why you have low levels, and you are saying that I'm belittling you? I don't understand why this is the case.

And regardless of whether you think that you eat 'healthy' or not, if you are not eating a gluten-free 'paleolithic' type diet with plenty of healthy fats as you can learn about in the The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions that has been proven to reverse MS (which was developed by an MD who got MS and was unable to reverse it using traditional medicine. So she doesn't 'think' like a neurologist either, which is why she was able to develop an effective protocol to reverse MS), then you are not eating healthy. Gluten, most grains, and 'vegetable oils', as well as processed foods are inflammatory substances in all people at all times. And it's possible that you are eating many other substances, such as pasteurized dairy, corn, and soy that are detrimental to your health that the 'standard' medical community tells you is good for you, but that are absolutely horrid for your health.

If you have MS, then it's a 'given' that you have been eating these 'bad for you' inflammatory foods- and hence your diet is not in any way 'healthy'. This is not an insult, but an observation that I've made from every unhealthy person that I've ever worked with who also INSISTS, like you are, that they eat 'healthy'. They are not, and I can be certain that you are not either. If you were, you would not have got MS!

shoot the messenger
by: Kerri Knox, RN- The Immune Queen!

Gluten, corn, soy, 'vegetable oils' and pasteurized dairy are not healthy in anyone. Period. Neither are meats or eggs from 'feedlot' animals, which you almost certainly have consumed regularly throughout life, and any and all of the above could have contributed to the leaky gut and inflammation that led to your MS. Yes, the virus you had could have ALSO contributed to it- probably by setting up an inflammatory condition in which your gut became fragile and leaky.

And the reason that I say that I think like an alternative gastrointestinal immunologist is that there is VERY good evidence to believe that ALL autoimmune diseases (of which MS is one), are caused at their root by leaky gut syndrome.

Again, you can certainly 'believe' whatever you want to believe, and you are certainly welcome to 'do' whatever you want to do, but thinking about your disease as if it's a problem of the gut and treating it as such can actually improve MS or have it go into remission. If you want people who help you to 'think like a neurologist', then it's unlikely that you'll ever get better since I know of zero cases of MS that ever consistently improved for long periods, went into long-term remission, or were cured using standard western medicine treatments.

You are certainly welcome to believe what you already believe, but it's unlikely to get you well.

If you want to learn how to get well, you might be interested in listening to Dr. Terry Wahls. An MD who got MS and found that Western Medicine was woefully inadequate to get her better, despite getting quite literally the best medical care available. Finally, her own research led to to being able to get out of a wheelchair and getting better. And her research didn't lead her to viruses or drugs.

Dr. Terry Wahls. While her conclusions are somewhat different than mine or other folks that study this, her solution is virtually identical.

So, you're welcome to 'shoot the messenger' as they say... or you can hear the message. It's neither here nor there to me, but it likely is VERY much 'here or there' to you since you're the one with a disease that is 'incurable' in western medicine.

I truly hope that you read the info above and take to heart what I've told you. I'm not here to 'belittle', I'm here to educate. And sometimes being told the truth bluntly when it's in sharp contrast with what you already believe can feel as though it's belittling.

Kerri Knox, RN

Thank You!
by: Debbie


Thank you for giving me constructive information. What helped my osteopenia along was the total hysterectomy I had in 2011; estrogen is one of the key components to bone density. I didn't know it mattered that much, but it does; I think I read 30% more chance of getting it post-memopausal.

Help me understand how the gut is a key cause of what seems like everything if I understand you correctly. I think MS is a sneaky disease; more power to people who have alternative methods that work for them. When you have multiple conditions I think that doesn't help either; granted they're not associated with MS but they affect your overall health.

I was surprised that for all my life my Vitamin D levels have been in the acceptable range; and to get the surprise to me, I asked them to check my Vitamin D to see how it was; it's not part of a standard CBC blood test - maybe it should be. And then I asked for the bone density scan to figure out a baseline; I was expecting to be normal, but no, I can look forward to osteoporosis in the future as well as glaucoma (thanks Dad). He also gave me high blood pressure and high cholesterol.

I was in my little happy bubble because people with MS typically have low Vitamin D levels and I was the exception; and now I'm the norm. I'm doing everything I physically can to keep whatever I can at bay. I am my own advocate of my health, you have to be. I learned it when we couldn't figure out why I was losing so much weight without trying; I was starting to look annorexic. I had to go through a lot of specialists and tests to finally figure out I have MS. In a way it was good because along the way I was able to put my medical team together; and believe me, there's only one that I haven't gone back to.

Especially true of those with multiple problems
by: Kerri Knox, RN- The Immune Queen!

Here are a couple of ways to understand leaky gut better. First of all read my page on Increased Intestinal Permeability. On that page, be sure to specifically watch the short 4 minute video on how and why leaky gut is so damaging. It's quite elucidating and may give you an 'AHA' as to why leaky gut is so bad, why it causes so many problems and how it can so easily happen.

Kerri Knox, RN

Sharing Leaky Gut Syndrome Info
by: Debbie


I'd like share a little information that I found out from an expert registered diatician about leaky gut syndrome. She writes:

They really can't prove "leaky gut." It's a popular theory in all the disability circles - said to be "the cause" for autism by many. Gluten is not evil. It's a protein. :)

Seriously....there is an increase in understanding of what is called gluten insensitivity - as compared to celiac disease (which is more like an allergy and has some immediate effects). Is it clear? not yet. The gluten-free industry grew 200% last year because of the focus of alternative camps and this leaky gut theory. It's great for us, because that means more product and lower cost and better availability. But it's not necessary to the level seen - especially in the Portland area.

Here's what I tell people:
If you think or wonder if this will be of help, give it a try. Before you do, write down all the things you think it will improve. Keep a journal or make a checklist to document how you feel. If you don't see or feel a dramatic benefit in 30 days, it's not for you.

I take this approach because it's too hard to have a logical discussion. Leaky gut makes no sense. Even if there was a "leaky gut," I have trouble following the fuzzy science that suggests the substances cross the blood-brain barrier.

At the Dietitian national convention last year there was a leading doctor speaking on Autism. He was amazing. He showed that even with well done, double blind studies that showed that a gluten-free, cassein free diet didn't change things, parents still follow it as the gold standard of therapy.

I also believe it is a tough diet to follow. Thus, what happens is people are more conscious of the foods they are eating, the quantity, the balance, etc. a result, they eat more healthfully. Poof. they feel better.

So, that's what I wanted to share with you. I choose not believe leaky gut syndrome was an ingredient in the cause of my MS. As to bone density, being post-menopausal seems more plausable for why my Vitamin D dropped so much; I have figured that out along the way. You have helped me by thinking outside the box; to do more research because you gave me cause because I was confused by your opinion.

But now I know and understand better. Thanks for letting me see that your way is the wrong way for me.

You're missing the entire point Debbie
by: Kerri Knox, RN- The Immune Queen!

You're missing the entire point Debbie. And by the way, yes, you very much CAN prove leaky gut. There are plenty of (western medicine) studies that show this. Also, yes, gluten is a protein... one that is indigestible by humans. Humans do not have the enzymes required to digest this protein. Did you even read any of the many links I posted showing this?

But you are going to listen to a dietitian over the MD in the video, Terry Wahls, who found that western medicine was clueless to help her go into remission from her MS, while her diet did.

However, even your dietitian agrees with me on the 'try it and see how it makes you feel'. That is ALL that I've ever said!

But I'll tell you that she does not know what she is talking about. There are several studies showing that in ALL cases, ingesting gluten is inflammatory to the gut- some people just tolerate it better than others.

But it sounds like you already 'know' the answer. You don't want to go gluten-free and you are going to find anyone and everyone that will confirm for you that this is unnecessary. You WILL be able to find plenty of them. None of those people have helped anyone recover from MS though. While Terry Wahls has! So, who would you prefer to listen to?

So, congratulations on confirming your bias. I hope that doing the same thing that you've been doing works to get you well. I find that that tactic rarely works, and Einstein discussed the phenomenon of doing the same thing over and over... but good luck just the same.

Kerri Knox, RN

Peer reviewed studies on leaky gut syndrome
by: Kerri Knox, RN- The Immune Queen!

Here are some of the peer reviewed studies in the literature showing that leaky gut does exist, contrary to the extensive experience of your registered dietitian:

1) Increased intestinal permeability to macromolecules and endotoxemia in patients with chronic alcohol abuse in different stages of alcohol-induced liver disease

2) Is small intestinal permeability really increased in relatives of patients with Crohn's disease?

3) Increased Intestinal Permeability Is Associated with the Development of Multiple Organ Dysfunction Syndrome in Critically Ill ICU Patients

4) Genetic basis for increased intestinal permeability in families with Crohn’s disease: role of CARD15 3020insC mutation?

5) Intestinal permeability: An overview

6)Multiple sclerosis patients have peripheral blood CD45RO+ B cells and increased intestinal permeability

7) Possible Familial Association of Multiple Sclerosis and Inflammatory Bowel Disease

8) Mechanisms of Disease: the role of intestinal barrier
function in the pathogenesis of gastrointestinal
autoimmune diseases

9) The gut-brain barrier in major depression:
Intestinal mucosal dysfunction with an increased
translocation of LPS from gram negative
enterobacteria (leaky gut) plays a role in the
inflammatory pathophysiology of depression

10) Tight junctions and the modulation of barrier function in disease

11) IgA antibodies against gliadin and gluten
in multiple sclerosis

These took me all of 5 minutes to find. How did your dietitian decide that leaky gut can't be proven, when I proved it in 5 minutes? I don't make this stuff up. I've studied this and that is how I've come to the conclusions that I have.

Kerri Knox,RN

My Response...
by: Debbie

I'll give you that leaky gut syndrome exists, however, I still don't believe it causes MS. It can make MS symptoms worse by having intact food slip through a tear in your abdomen and intestines and get into your blood stream. But crossing a blood barrier is still tough for me to accept. I don't believe in my case that I have had this. I don't have diverticulitis which would make sense as an avenue of escape.

The only gastro problem I have is constipation due to medications I take; no GERD, no heartburn; I don't eat things that would upset my stomache. My body talks to me and tells me when something's wrong. The most daring spice I use is sweet chili powder in sloppy joes.

Stress is what I truly believe caused my MS to come out of its dormancy state and that I contracted the MS when I had hard measles as a child. In reply to your question about the dietician, she has a son with celiacs disease; he's 23 now plus she has a Masters Degree in Nutrition and has done plenty of research over the years. She's like me, no stone is left unturned when you're looking for answers. Never give up and think "outside the box".

You just have not educated yourself
by: Kerri Knox, RN- The Immune Queen!

Hi Debbie,

Your suppositions just show that you are making assumptions and not educating yourself. You can have leaky gut with ZERO digestive issues. In fact, Celiac Disease is often diagnosed by skin doctors and is manifested ONLY by a skin rash called Dermatitis Herpetiformis and no other symptoms. And is cured by a gluten free diet.

There is absolutely no requirement to have digestive problems of any kind to have either Celiac Disease or non-Celiac Gluten Sensitivity.

So, you say that you think your MS was caused by stress. Well, what do you think happens during stress but that you get inflammation in your digestive tract and get leaky gut! By what mechanism would stress have caused your MS? By increased intestinal permeability:

1. Stress and intestinal barrier function

2. Modulation of intestinal inflammation by stress: basic mechanisms and clinical relevance

Diverticulitis is only an 'obvious' means of escape. If you think that leaky gut is not an avenue of escape, then you've not looked at the resources that I gave you and I VERY MUCH doubt that you 'leave no stone unturned', especially because you don't think that these gut toxins cross the blood brain barrier when many of the studies discuss how Zonulin, a product of gluten ingestion, was first discovered in the brain!

And the Dietician, also obviously has left plenty of stones unturned if she still thinks that you can't 'prove' leaky gut when there are thousands of studies out there on it, I found 5 in 5 minutes, that she has obviously not read.

So, it sounds more like you are simply confirming your bias than it does that you are doing actual research since:

a) Leaky gut DOES exist
b) Stress can and does cause leaky gut
c) Food proteins do NOT need diverticulitis like lesions in order to leave the digestive tract
d) These food proteins and toxins HAVE been shown to cross the digestive barrier into the blood- regardless of whether you find that implausible.
e) I showed you several studies confirming the relationship between MS and Leaky gut
f) One does not need to have digestive problems in order to have Celiac Disease or non-Celiac gluten sensitivity.

Again, you are totally free to believe whatever you wish, but it sounds to me as though you have chosen to believe that your MS was not caused by anything under your control and you choose to believe that it cannot be fixed by anything within your control. That's great. You can be one of the millions of MS sufferers that never get well!

Or you can choose to believe that you got MS due to something within your control, and by extension that you can reverse your MS by changing whatever it was that you did that allowed it to come on in the first place.

One is an attitude of being a victim, and one is an attitude of being in power and control. It's up to you which way you want to believe, and no amount of evidence that I present to you is going to make you believe differently than you believe now if you've already decided what you want to believe and are looking to confirm your bias.

Kerri Knox, RN

Yes, it causes autoimmunity
by: Kerri Knox, RN- The Immune Queen!

And yes, leaky gut can and does play a 'causal' role in MS because leaky gut is virtually a requirement in EVERY autoimmune disease, including MS.

The food proteins activate the immune system and cause it to go crazy and eventually end up attacking the things that it isn't supposed to attack- namely YOU. In each person, this manifests a bit differently depending upon their genetics and other factors. Some get diabetes, some get Hashimoto's thyroiditis, some get Lupus, some get MS and some get a variety of autoimmmune diseases all at the same time.

Here's the relationship, again, between autoimmunity and leaky gut and why leaky gut is one of the causal factors in virtually all autoimmunity:

* Tight Junctions, Intestinal Permeability, and Autoimmunity- And in fact, in this study they hypothesize that, "...loss of intestinal barrier function is NECESSARY to develop autoimmunity."

* Alterations in intestinal permeability- THEY say, "increased intestinal permeability is observed in association with several autoimmune diseases. It is observed prior to disease and appears to be involved in disease pathogenesis..."

* The measurement and clinical significance of intestinal permeability- "...explores abnormal intestinal permeability in clinical disease, emphasizing its possible role in the pathogenesis of autoimmune conditions."

This is not stuff that I make up. I research it.

Kerri Knox, RN

Dear god
by: Vertigo

I'm sure glad the Immune Queen has all the answers. There's a big difference between a cause and a factor. I suggest she learns it.

Researchers must need to learn too
by: Kerri Knox, RN- The Immune Queen!

Well, if I need to learn the difference between a cause and a factor, then the researchers need to also, because that's where I'm getting this information- peer reviewed studies that state that leaky gut is the CAUSE OF these diseases. The word 'pathogenesis' means 'cause of'.

So, if you disagree with the conclusions and studies presented here, I would encourage you to write to the researchers that did the studies and discuss your differing conclusions with them.

Let me know when you do that. I'll be happy to post your rebuttal to their research! Until then, good luck getting well listening to your doctors, the MD Terry Wahls that I presented, had to finally admit that western medicine had nothing for her and that diet held everything for her for her to finally get out of her wheelchair.

I hope that you take this info to heart, get the The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions as I mentioned, and start getting well like Terry did after she finally abandoned the ineptitude of western medical care for MS. I wish you luck and hope that you find a solution to your health problems based on a paradigm that says there is no cure. Although it seems unlikely that you'll get better in such a paradigm, don't you think?

Kerri Knox,RN

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