Vitamin D, NOD2 Gene and Crohn's Disease

[David]

Our science advisor, Judith, has been doing a lot of research on the NOD2 gene which is (along with many other genes) implicated in the manifestation of Crohn's Disease. She recently came across this journal article which discusses NOD2 and Vitamin D.

In short, tons of people with Crohn's Disease are deficient in vitamin D. There shouldn't be a person on this forum with Crohn's Disease who doesn't know what their vitamin D level is. If you don't know what it is, get it tested. If it's below 50, get it above 50. Yes, some doctors think levels below 50 are ok, but get it above 50! Sorry for being a nag but it's because I care (my mom would so be laughing right now)

For those of you who don't want to read the journal article or for those of you like me who have to read it 43 times because their brain exploded the first 42 times, let me see if I can explain. Actually, I'll use Judith's words first and add my translation below it:

NOD2 (the gene found mutated in a huge percentage of Crohn's patients) responds when it "sees" a specific component in bacterial cell walls, MDP. Eventually NOD2 sends its signals down a chain of different proteins until finally upregulating NFkB.

In Crohn's patients, upregulation of NFkB is deficient. This is important because NFkB acts to induce gene expression of many other factors. induces inflammatory response, factors that help the cell to survive during stress (like bacterial infection), factors regulating both innate and adaptive immune response, in particular T-cell activation, and multiple factors inducing killing of the bacterial infection. If Crohn's patient has a mutation in the NOD2 gene that regulates the NFkB transcription factor, they are not able to mount an effective immune response toward these infecting bacteria.

But- Crohn's patients typically show an exacerbated and inappropriately high inflammatory response. There are a couple of reasons for this. One important one is that the NFkB induces expression of its own inhibitory molecule, so it cannot inhibit itself.

Bacteria also activate inflammatory molecules through other pathways besides NOD2/IFkB so this is why the inflammation gets out of control PLUS the bacteria werent effectively killed so they overgrow and keep activating more inflammatory pathways.

To FINALLY answer your question..... Vitamin D3 can enhance NOD2 signaling (which is defective in Crohn's). In CD patients that have only one defective NOD2 gene, vitamin D3 would be particularly valuable because it can enhance the signaling through the NOD2 gene product that is functional. In CD pateints that have both defective NOD2 genes this would be more difficult but if there were a baseline very low signaling through their NOD2, it may help to enhance it.

My translation:

NOD2 is a gene that is busted in many people with Crohn's Disease. Think of it as part of the neighborhood watch patrol keeping an eye out for bacteria that shouldn't be in your system. If it sees some suspicious bacteria it calls 911 to tell the 911 dispatcher named NFkB to get into high gear. Only thing is, if you have Crohn's Disease chances are there aren't enough 911 dispatchers so NOD2 gets a busy signal and the NFkB (911 dispatcher) doesn't tell the police and fire department that you need help. The bad guys (bacteria) break into places they shouldn't be and start fires. There's nobody to stop them so it gets worse and worse so your neighborhood has to call in private security (your gastroenterologist) and nuke the whole place from orbit (medicate you).

Well, if you're low in vitamin D, then NOD2 never even makes that 911 phone call. If you have plenty of vitamin D, then NOD2 can keep calling back and hopefully get through to a dispatcher.

 

[Judith]

I absolutely LOVE your translation!
Love it! Love it!
Here is a link to the actual article David was referring to in case anyone is interested:
http://www.jbc.org/content/285/4/2227.full.pdf+html

 

[nogutsnoglory]

Isn't the immune system over active and that's part of the problem?

Do you know through reading studies what levels of Vit D were used or could be therapeutic.

 

[Judith]

Isn't the immune system over active and that's part of the problem?

Excellent point! My short answer is "Sort of".

First, I have to add some disclamers:
- that there are MULTIPLE gene mutations that can cause "Crohn's Disease" not only the NOD2 / CARD15 gene.

- Even NOD2 / CARD15 mutations can have different effects. Even non-Crohn's diseases!

- So, all of this information is restricted to Crohn's Disease due to NOD2 / CARD15 mutation and is not necessarily applicable to other gene mutations causing Crohn's.

- The major problem with Crohn's Disease having so much symptom variability between patients is due to the Crohn's Disease molecular mechanism being VERY complicated and different gene mutations can cause different symptoms because a mutated gene can affect other pathways as well.


Longer Answer (Please bear with me. The pathway is complicated. ):
You asked about the overactivity of the immune system being part of the problem. It is true this is part of the problem and it does not seem to make sense that you would want to enhance this inflammatory pathway even further. Here is why increasing NOD2 signaling is good (ONLY for Crohn's patients that have gene mutations that reduce NOD2 signaling).


First Reason:
- The NOD2 pathway is activated with a specific component of the bacterial cell wall (MDP). This pathway signals through a bunch of other proteins until it finally gets to NFkB. The NFkB turns on a huge number of genes that activate the immune response.
- The NFkB signaling is one of the first pathways activated in the immune response.

- NFkB turns on genes that help to "fine-tune" the immune response by feeding back into the pathway and actually shut it down (if the signal comes through the NOD2 pathway).

- There are "alternative" pathways (non-NOD2 signaling) that recognize bacterial cell wall components other than MDP. When signaling occurs through these pathways the "fine-tuning" signal is not turned on.

SO

- When the NOD2 pathway has defective signaling through it and MORE signaling through non-NOD2 pathways there is less dampening of the immune response.... so more pro-inflammatory responses result.


Second Reason:
- Defective Signaling through the NOD2 pathway results in a vicious cycle of inflammatory responses and bacterial overgrowth commonly seen in Crohn's Disease.

- Defective signaling through the NOD2 pathway affects the part of the immune system that is "specific" for the bacteria causing the infection. The "specific" response is delayed in response to bacterial infection but is much better (specific) regarding the bacteria that needs removal.
- So, defective NOD2 signaling reduces the "specific" immune response to bacterial infection. As a result, the bacteria are not cleared as effectively. If the bacteria are able to grow faster than the immune system can clear them, a "bacterial overgrowth" situation can result. A vicious cycle occurs because more bacteria = more substances in the cell wall that activate the immune response = more inflammatory stimulation = worsening of symptoms.

- The NOD2 signaling pathway will trigger the release of antibacterial agents that are released into the intestine. If NOD2 signaling is defective, antibacterial agent release is reduced and bacteria can continue to grow.

- Normally, the NOD2 pathway results in a phenomenon called "tolerance" when signaling through the pathway occurs for a long time. Immune tolerance is literally when the immune system tolerates or ignores an antigen that may normally induce an immune response. Immune tolerance is extremely important for the immune system to recognize what is "self" (i.e. yourself) or "supposed to be there" (i.e. E. coli bacteria in the gut).
- If NOD2 pathway signaling is defective "self" may not be recognized leading to auto-immune diseases.
- If NOD2 pathway signaling is defective "supposed to be there E. coli" may not be recognized and the body may (falsely) continue to mount an immune response thinking it is a pathogen.

SO

- Vitamin D helps to enhance signalling through the NOD2 pathway and this is good (for reasons discussed above).

Do you know through reading studies what levels of Vit D were used or could be therapeutic.

I think the "therapeutic dose" or vitamin D has to be tailored to the patient. Some people can incorporate it better than others. This may not be the most helpful response but pretty much what helps you to normalize your blood levels. Some studies are performed in a "cell culture" type of format, especially those that are looking at molecular pathways. These dosages are really convertable into a whole person dose.

Some people cannot absorb enough Vitamin D taken by mouth to get back to normal serum levels and they revert to "other" methods. Here is the link to an article abstract that talks about a Crohn's Disease patient who could not absorb Vitamin D by mouth so she went to the tanning salon.

http://www.gastrojournal.org/articl...r=http://www.ncbi.nlm.nih.gov/pubmed/11729127

I am not necessarily suggesting you go to the tanning salon or hang out sunbathing for hours on end. There is a link to UV skin radiation and cancer. You and your doctor have to look at your genetic and family history Plus look at the meds you are on (some antibiotics in particular have a very bad sunlight/UV/tanning salon interaction) in order to determine if UV light is right for you.

NOTE** DO NOT go to the tanning salon if you have Lupus. UV light can be a major trigger for persons with Lupus.

I hope that answered your Excellent question/point.

 

[Judith]

Nogutsnoglory, Here is an article you might be interested in regarding Vitamin D dosage for Crohn's disease:

This article is a clinical trial using 1200IU Vitamin D3 orally in Crohn's Disease patients that were in remission. After 3 months Vitamin D3 treated patients increased serum levels from 69 nmol/L to 96 nmol/L

Relapse in Crohn's Disease patients that were given Vitamin D3 was lower than Crohn's patients getting placebo (pill without Vitamin D3).
Relapse Rate in CD:
- Vitamin D3- 13% Relapsed
- Placebo- 29% Relapsed
Their study size was quite small (46 patients given Vitamin D3, 48 patients given placebo). They suggest a larger study should obtain statistical significance of their findings.
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2010.04355.x/pdf

 

[David]

That relapse data is fascinating Judith (I realize it was considered insignificant, but still ) I wonder how it would be if they got the people's levels around 50 ng/ml of vitamin D.

So there isn't any confusion, when we talk about vitamin D levels here, we use the conventional factor which is ng/ml. nmol/L is the SI unit. When I say, "get your level above 50" I am speaking ng/ml (I'll get better about specifying that). To convert the above 96 nmol/L to ng/ml you divide by 2.496 which comes out to 38.46 ng/ml which, in my opinion, and the opinion of the Vitamin D Council, is still way too low.

In speaking with Dr. John Cannell of the Vitamin D Council, a conservative place to start would be 2000iu per day then recheck your vitamin D levels in 3 months. If you're still below 50 ng/ml then add 1000iu every 3 months until you're above 50 ng/ml of vitamin D. I know many here have started at a much higher iu with no problems but in the end, you should get your serum levels tested then use this to be a little more scientific about it.

 

[nogutsnoglory]

Judith thank you so much for all of this great info. I don't know which gene may be contributing to my crohns. Is there a blood test that can help shed some light on this?

 

[DanHerefordshire]

http://www.bbc.co.uk/news/health-17488002

it was national news on the tv in the uk just last month a quater of the british population is said to be low on vitamin D....
i have heard of people with crohns to move to much hotter countries and they feel much better

 

[Judith]

Judith thank you so much for all of this great info. I don't know which gene may be contributing to my crohns. Is there a blood test that can help shed some light on this?

Nogutsnoglory, You are very welcome for the info. It is not exaustive by any means because so many things affect how Crohn's plays out. Some people can even have a gene mutation that correlates with Crohn's but also have a "protective" mutation so they have minimal or no symptoms.

Probably the most widely used testing service for IBD differentiation between Crohn's and Ulcerative colitis is done by Prometheus Labs Inc. They have a [wiki]Prometheus IBD sgi Diagnostic[/wiki] that does this. It is not perfect but it can be used in some people to offer a pretty confident diagnosis. Some people can end up with ??? results too though.

Prometheus also offers a [wiki]Prometheus NOD2 / CARD15 Test[/wiki]. This test looks at the NOD2/CARD15 gene. This is the most common gene found mutated in Crohn's and can confer a more aggressive variant of the disease. This depends on which mutation, whether there are multiple mutations (in NOD2 or in other genes), if both genes are affected, environmental effects, and some magical "other" factors that researchers are still trying to work out.

I linked to the wiki regarding these tests but please bear with me I am still working on them.

Does anyone have any idea what the cost is for these Prometheus tests? Did your health insurance pay? If so, what health insurance did you have? And, did you have to get a pre-authorization for them to pay? Thank you for any information regarding this.

In addition to Prometheus testing, if you have a specific variant that runs your family you can have that specific test run for your specific gene mutation.

My husband actually did this for BRCA1 (the breast cancer gene) which his mother was tested for and came up positive. The test was around $3500 or so for her because they were looking at a bunch of different breast/ovarian cancer genes (she has had ovarian cancer 2 times very young). When they found out her mutation was BRCA1 and where the mutation was she gave that info to my husband. He had a test done that specifically looked for the mutation that his mom has. He came up positive for BRCA1 (he had a 50:50 chance). Believe it or not, BRCA1 mutations increase susceptibility for certain cancers in men (not just for women). This specific gene test was around $450. Big difference.

Very Important Regarding Genetic Testing
You should think very carefully before having genetic testing done because you can be discriminated against for insurance for certain situations (including, life insurance, disability insurance, long term care insurance). Right now, there is a law in place (in the US), called GINA that does not allow your health insurance to discriminate against you because of a gene test result. It also says your employer cannot discriminated either (if the company has 15 or more employees).

Pretty Scary. I have some information about it on my "work in progress" [wiki]Prometheus NOD2 / CARD15 Test[/wiki] at the bottom. My husband and I ran into this problem when we were wanting to get him tested.

Here is how we got around the problem:
- He wanted to get tested for the BRCA1 gene which his mother and sisters have.
- The law says they can turn you down for life insurance based on the test result
- He wanted to get life insurance to protect me in case something did happen to him but he has a little life insurance through work and didnt want to add a ton of life insurance unless he has the BRCA1 gene.
- Here is what we did:
- We went to the genetic counselor, who was Super great, and she told us to test under a fake name. She just flat out told us to make up a name. All the other information in the paperwork was accurate (age, sex, etc) but no ID numbers or name.
- We had to pay for the test out of pocket (American Express helped us there) because we couldnt submit to the insurance company because it is attached to all of his information and ID numbers, etc. Many times if you want life insurance you have to give some information from your health insurance to prove you are healthy so this is where it would come up about the BRCA1.
- When the test came back and we found out he was positive for the BRCA1 gene mutation he signed up for something called "term life insurance" he basically signed up for the max number of years he could (term). Now, since he is under contract with the life insurance company he can release the information regarding his BRCA1 status to the health insurance company.
- Releasing his BRCA1 mutation information to the health insurance does a couple of things: First, we were able to submit the cost of the test to the health insurance company for reimbursement (some health insurance companies make you pre-authorize before some services so you may have to do this with yours or they wont pay); Second, since he is at greater risk for certain types of cancer, his doctors test for things earler than they might ordinarily. For example, BRCA1 increases risk for colon cancer (men and women) and our health insurance pays for a "screening" colonoscopy at 50 years of age. My husband is 40. They wouldnt pay if he did not have the BRCA1 mutation. But, since he does, the health insurance pays for a "diagnostic" colonscopy. He just had it done last month. I got pictures and everything! Doctor was very good (I added him to the Crohnsforum database). He is also at higher risk for prostate cancer so the insurance pays for PSA testing, dermatologist twice a year because he is at higher risk for skin cancer, etc.

I know other people have different experiences regarding genetic testing and their health insurance companies. I have had more than my share of issues with my current health insurance and insurance companies that I have had previously.... but, regarding my husband and his BRCA1 positive gene mutation Blue Cross and Blue Shield (BCBS) has been excellent. They usually do not pay for many of these tests he needs now but we just tell them he has the BRCA1 gene and they are "Oh, okay" and no more questions, they just pay. Blue Cross has been great with us. I have had nightmare experiences with other companies to have them pay for things they already should pay for.

Oh, and all health insurance plans are different (usually your employer will negotiate terms) but my health insurance plan from BCBS did pay for the gene testing reimbursement. Their genetic testing guidelines are: you have to be over 18, testing must be for a gene mutation known to cause a disease (so no eye color gene testing, etc.), they do not do Preimplantation genetic diagnosis / testing (testing of an embryo before they are implanted into the uterus using in vitro fertilization (IVF)).

I hope it helps and Good Luck.

 

[CLynn]

What about just taking Vitamin D (5000 units a day) without being tested? I have been doing this for about a month.

 

[David]

You want to find out what your baseline level is so you can create correlations with your symptoms, make sure that your supplementation is working as you get tests in the future, and to try to determine optimal dose. While there isn't any compelling evidence for vitamin D toxicity especially at 5000iu, that doesn't mean they won't find it in the future so optimized dosage to get around 50mg/ml is better than blind dosing.

I'll be curious to see if your vitamin D supplementation helps with your psoriasis. I just read a study that feels it may.

 

[CLynn]

See, David, you read my mind. That was the other reason I was trying it, lol! I really try not to complain, many people have psoriasis much worse than me, but it's on my knees and elbows, and I wear skirts and such for work. Get tired of answering the same question..."what's that on your knees?", etc.

 

[Judith]

http://www.bbc.co.uk/news/health-17488002

it was national news on the tv in the uk just last month a quater of the british population is said to be low on vitamin D....
i have heard of people with crohns to move to much hotter countries and they feel much better

I agree. In the United States alone, there are so many stories of people moving to warmer climates and feeling less symptomatic. This works for arthritis / arthralgia / joint inflammation pain as well. Especially in areas with constant-level, relatively high pressure weather patterns and low humidity (i.e. Arizona, Southern California, etc).

Vitamin D / Sunshine can affect mood which can raise the pain threshold.

I know personally, my joints are a disaster just before it rains. I can forecast a storm far more accurately than any TV News station. A friend of mine with Lupus (and related joint damage) can do the same.

Winter is difficult. I cannot wait to move back to California.

 

[Judith]

What about just taking Vitamin D (5000 units a day) without being tested? I have been doing this for about a month.

I agree with David. It is best to get a baseline level before you start supplementing and to consult with your doctor. Like David mentioned, most studies discussing Vit D toxicity are from consumption of amounts greater than 5000IU, there are some conditions where the body actually produces too much Vitamin D, conditions that inhibit the breakdown- or can be exacerbated by Vitamin D. There are also a couple drug-drug, or disease-drug interactions you and your physicans need to be aware of (and can be fatal).

Besides, maybe 5000 IU is not enough for you. I know $$ is probably a huge factor. These tests get expensive- but if at all possible I would get tested.

 

[Judith]

See, David, you read my mind. That was the other reason I was trying it, lol! I really try not to complain, many people have psoriasis much worse than me, but it's on my knees and elbows, and I wear skirts and such for work. Get tired of answering the same question..."what's that on your knees?", etc.

I bet it gets Very annoying. I am sure you get the questions from random strangers too. Some people really just dont get it......

 

[CLynn]

Well, I will be due for blood work by next week, now that I have the Aza again (drasted insurance company made me due 90 mail order supply, wound up a month without any), so maybe I can ask the nurse to run that one as well.

 

[Judith]

You want to find out what your baseline level is so you can create correlations with your symptoms, make sure that your supplementation is working as you get tests in the future, and to try to determine optimal dose. While there isn't any compelling evidence for vitamin D toxicity especially at 5000iu, that doesn't mean they won't find it in the future so optimized dosage to get around 50mg/ml is better than blind dosing.

I'll be curious to see if your vitamin D supplementation helps with your psoriasis. I just read a study that feels it may.

Wiki - Post!

 

[Judith]

Well, I will be due for blood work by next week, now that I have the Aza again (drasted insurance company made me due 90 mail order supply, wound up a month without any), so maybe I can ask the nurse to run that one as well.

Great! It might be beneficial to know Calcium and Phosphate levels too.
Check out http://www.crohnsforum.com/wiki/Vitamin-and-Mineral-Deficiencies

 

[CLynn]

I bet it gets Very annoying. I am sure you get the questions from random strangers too. Some people really just dont get it......

LOL! YEs, it gets very annoying, and many random people. I expect it from children, that never bothers me (might embarrass me sometimes, lol) And....I have a twisted sense of humor and a rather large sarcastic streak, so once, when working at the car dealership, after the umpteeth time answering that question, I told one of the salesmen that it was rug burns! :devil:

 

[Judith]

Hahaha..... but did you tell him how you received those rug burns?

Tell people it is an old Shuffleboard injury......

or

you are a professional full-contact golf player and you had to "take one for the team".

 

[CLynn]

Hahaha..... but did you tell him how you received those rug burns?

Tell people it is an old Shuffleboard injury......

or

you are a professional full-contact golf player and you had to "take one for the team".

(Snicker, snicker)...Nah, I let him draw his own conclusions. Of course, I turned red as I turned to go, but...
Those are great, I will use those! We have the same sense of humor!

 

[Judith]

I think we should start a Thread about funny responses other people have given in similar situations..... I bet there are some really creative and funny ones out there!

 

[nogutsnoglory]

David what is 50mg in IU and what are you basing that on?

 

[Brian'sMom]

When you take several things...zinc, iron, multi vitamin, entocort, Humira...When is it best to take the vit D? I forget its side effects. Because zinc can cause nausea, my son takes it before bed. The iron (Constipation) and multi vitamin after dinner, and the entocort after breakfast. Do any of the supplements interfere with each other?

 

[David]

David what is 50mg in IU and what are you basing that on?

As far as I know, mg/nl isn't convertible to iu (mcg to iu is convertible) but they've done some studies such as linked above regarding how many iu it takes to raise certain amounts of mg/nl. I'm basing the "Around 50mg/nl" off the recommendations of Dr. John Cannell of the Vitamin D Council.

 

[David]

Brian'sMom, was the zinc at the recommendation of your doctor? What is the dosage of the zinc supplement and how much zinc is in the multivitamin you also give? Zinc toxicity is a very real danger and the two together has me a little concerned. For example, a kids multi I just looked up has 15mg of zinc. Common doses for supplemental zinc capsules are 50mg. So that's a combined 65mg. The Linus Pauling Institute at Oregon State mentions the tolerable upper intake for Zinc for 12 year olds would be 23mg per day with acute toxicity manifesting as abdominal pain, nausea, and diarrhea. Vomiting would come at higher intakes.

As far as I know, vitamin D doesn't interfere with anything you listed. Those on psyllium, questran, and welchol should take them as far apart as possible from the vitamin D (and other meds/supplements for that matter) as they can interfere with the absorption of vitamin D. Some take vitamin D with a little oil like olive oil if it's not in the capsule as vitamin D is fat soluble.

 

[huntersgirl]

David, I am still in the testing phase, trying desperately to get a diagnosis. So far out of all the tests the best they can come up with is that I am vitamin d deficient. I was pretty sure that this was random and unrelated, until I saw your posts. My level is at 4. I have been prescribed 50,000iu 2x per week along with 3000iu over the counter vitamin d daily. I have to do this for 6 months before retesting. Any advice or suggestions?

 

[David]

4? Wow. Your vitamin D supplementation sounds pretty good but I'm curious about the underlying cause of the deficiency. Would you like to start your own thread in our Your Story forum at the top of this website detailing what's going on? There's some wicked smart people on this forum and someone might have an idea.

Oh, and I'd get your vitamin D retested in 2 months, 3 months max to make sure it's headed in the correct direction, and fast.

 

[huntersgirl]

Thanks, david! I will post on the other area what I have gone through so far!

 

[CLynn]

You want to find out what your baseline level is so you can create correlations with your symptoms, make sure that your supplementation is working as you get tests in the future, and to try to determine optimal dose. While there isn't any compelling evidence for vitamin D toxicity especially at 5000iu, that doesn't mean they won't find it in the future so optimized dosage to get around 50mg/ml is better than blind dosing.

I'll be curious to see if your vitamin D supplementation helps with your psoriasis. I just read a study that feels it may.

David, it did cross my mind that I won't really know for certain right now if the vitamin D is helping my psoriasis, since I am also taking 150 mgs. of imuran, well, aza. Since psoriasis is autoimmune as well, I am guessing the aza will affect that as well as my crohn's.

 

[Mark in Seattle]

Whenever I drink any coffee-type beverage or many other items, I get burning in my voicebox. My GI & ENT doc's have told me for years that I have LPR (laryngopharyngeal reflux disease), which is not heartburn, but burning in the airway attributable to minute acid/pepsin gases escaping from the stomach.

I used to live in Spokane, and lived with Crohn's there for about 20 years, and my disease was pretty mild while living there. Quite a bit of sun in Spokane actually. But within 5 months of moving to Seattle, suddenly I was hospitalized needing emergency surgery for Crohn's and that is when I developed the LPR as well. I've suspected vitamin D for these problems since half of the year you don't see the sun in gloomy Seattle.

I stumbled onto trying vitamin D drops (Carlson brand) and it helped immensely with my LPR problem. But I can't take a lot of vitamin D, whether it's D drops or D capsules because it lowers my blood pressure and then my blood pressure shoots up. I tried this last night since I got my blood pressure machine. Baseline was 120/80, then 2 minutes later after the D drop, it was 108/70, and then 5 minutes later 140/90. This was all just while sitting in a chair. Wow.

So I just use a food based daily multivitamin, which does help my LPR problem similar to the D drops but does not give me the blood pressure problem. Unfortunately it only contains 700iu of D3.

My doc tested my D level at 20 a couple years ago, which he said was right on the border of needing supplementation.

I'm soliciting ideas about how to make more progress on D supplementation. I know that when I've consumed tons of D-fortified milk, I don't get the effect at all like I do when taking my multivitamin or the d-drops, so I don't think I'm absorbing D from milk for some reason. I am intrigued about the tanning salon article attached in this thread - any opinions on if that is a reasonable approach? I'd really like to try some way to up my vitamin D levels, but just not something that's going to make me sick like the vitamin D caplets do.

If the housing & job market were better I'd love to move out of Seattle due to the gloomy weather.

 

[DanHerefordshire]

I know personally, my joints are a disaster just before it rains. I can forecast a storm far more accurately than any TV News station. A friend of mine with Lupus (and related joint damage) can do the same..

Iv never heard of this i think thats because the weather is always so terrible here in the uk on the very rare occasion when the sun does shine everyone comes out feeling so much more happy and better

Winter is difficult. I cannot wait to move back to California.

Im jealous of that lol

 

[David]

Mark,

That's quite interesting and must be very frustrating. I know vitamin D deficiency can cause high blood pressure but what you have going on is weird. Hypervitaminosis comes to mind but that you're getting the reaction minutes after the intake is strange. I wonder if something weird is going on with your calcium or phosphorus levels as vitamin D definitely affect them.

Since you know you can handle 700iu fine, I might get a gelcap type of vitamin D in like 400 or 800iu. Take one a day for ten days and make sure you're fine. Then up that to one in the morning and one in the evening and make sure you're fine for 10 days. And then up it again. Obviously run such an idea by your doctor first.

Oh, and 20ng/ml is way too low and needs supplementation for sure.

 

[Mark in Seattle]

Thanks David, but as I mentioned, I've tried the gelcap (sorry, that's what I meant by D capsule) and I have the same reaction - it makes me ill and I gotta lie down, it's terribly unpleasant for a few hours. I remember trying the smallest dose, which was undoubtedly 400mg. So the gelcaps are definitely out. And even with the gelcaps the ill-effect hits me within minutes of taking the gelcap. That's why I was sort of intrigued with the tanning idea, in spite of the fact that I have no interest in tanning otherwise. I'm looking into possibly starting 6mp, so maybe tanning beds and 6mp might not be the best combo....

 

[DanHerefordshire]

I am intrigued about the tanning salon article attached in this thread - any opinions on if that is a reasonable approach? I'd really like to try some way to up my vitamin D levels, but just not something that's going to make me sick like the vitamin D caplets do.

hi mark i use the tanning salons for three reasons one being vitamin D and two being anemia that makes me pale and three being if i take steroids it brings spots out in me

iv founnd i sub help vitamin D by eating fish two three times a week and sub help the anemia by eating beef and chicken two three times a week..plus i take liquid vitamins

my levels of all these were testing low untill i changed diet and added the sun shower...and vitamins

the sun is the only cure iv found for acne from prednisone

i can usually get through the summer without using it to much and getting sunlight in the garden everyday in the winter i have five mins every 10-14 days

i dont like using the sun shower due to the risks but i can really feel the difference so its sort of addictive in a way

 

[Mark in Seattle]

Thanks Dan, that makes me a bit more intrigued yet.

Can you give me some idea of how long & how frequently you use the tanning beds & how long it took to see your vitamin D levels improve?

 

[Brian'sMom]

Brian'sMom, was the zinc at the recommendation of your doctor? What is the dosage of the zinc supplement and how much zinc is in the multivitamin you also give? Zinc toxicity is a very real danger and the two together has me a little concerned. For example, a kids multi I just looked up has 15mg of zinc. Common doses for supplemental zinc capsules are 50mg. So that's a combined 65mg. The Linus Pauling Institute at Oregon State mentions the tolerable upper intake for Zinc for 12 year olds would be 23mg per day with acute toxicity manifesting as abdominal pain, nausea, and diarrhea. Vomiting would come at higher intakes.

As far as I know, vitamin D doesn't interfere with anything you listed. Those on psyllium, questran, and welchol should take them as far apart as possible from the vitamin D (and other meds/supplements for that matter) as they can interfere with the absorption of vitamin D. Some take vitamin D with a little oil like olive oil if it's not in the capsule as vitamin D is fat soluble.

He was prescribed the extra zinc when he went thru a long bout of diarrhea, then I just kept it going. I think I'll quit that one now! Does Vit D cause nausea? I noticed someone on here speaking of it causing them to feel bad and having to lie down.

 

[David]

He was prescribed the extra zinc when he went thru a long bout of diarrhea, then I just kept it going. I think I'll quit that one now! Does Vit D cause nausea? I noticed someone on here speaking of it causing them to feel bad and having to lie down.

I'd discuss it with your doctor before you quit the zinc but my guess is that it will be ok to do so. Mark's strange side effects to vitamin D are rare. I haven't heard of anyone else with anything like it, especially at such low levels of supplementation.

 

[DanHerefordshire]

Thanks Dan, that makes me a bit more intrigued yet.

Can you give me some idea of how long & how frequently you use the tanning beds & how long it took to see your vitamin D levels improve?

unfortunatly i cannot answer this question because every tanning salon calibrates their machines differently you would have to check that your tanning sunbeds actually emit uvb rays not just uva they should help you with this as its one of their selling points...excisting skin colour is also a factor....

I dont like telling people to use them to be honest but i think two or three sessions would not hurt if you have one in your area that emits uvb rays

 

[JThorn676]

I had the Prometheus test as part of my diagnosis. The two tests they performed were IBD Serology 7 ($445 )and Crohn's Prognostic ($220). I called my insurance company prior to doing the tests to find out if it would be covered - to which they told me only a percentage would be covered but to my surprise, I never received a bill and my online insurance information shows it was paid 100% which was a huge weight off my shoulders! Oh, and I have United Health Care and thankfully, I have an AWESOME insurance plan

My doctor didn't give me any paper type results from the Prometheus. He just told me that I do have Crohn's disease and it is "aggressive".

Kind of un-related but do you guys get your results (like on paper to take home) for everything? I have no idea what came of these blood tests besides what my dr told me. I also know that I am on Vit D suppliments (5000 IUs a day) because my levels came back low after bloodwork (but I don't know the #). The only information I have on paper is my pathology and information from my hospital stay.