Multi vitamins

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Hi again,

B's on Centrum with iron. It is a good multivitamin and has the extra iron she needs. It seems to be okay on stomach too.

What does Devynn take?
 
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Up until now she hasn't taken anything. But I am looking at multi vitamins for her. The ped didn't have a recomendation, so I figured what better place to ask :D
 
We use Freeda Vitamins. No dye, no sugar, no starch or artificial flavorin added. I purchase these on Amazon and we all take them.
 
We don't give multi-vitamins any more. Her GP which HUGE in nutrition said it's always better to treat her low vit. if there are any. Grace is low in vit. D and zinc.
Once her eos disease is under control she be taking probiotics.
 
Ok, makes sense. Devynn's family doctor has always told me she doesn't need extra vitamins because her vitamin levels have always been good and she eats very healthy. She's prob the only kid I know who will turn down junk food (chips, chocolate, cookies, candy etc) for fresh fruit, veggies or something healthy. Her ped mentioned multi vitamins and I told her what our family dr said. She said that multi vitamins won't hurt her, so why not take them.. lol
 
Jack is the same way, doesn't like chocolate, cake, cookies but give him a bowel of brussel sprouts with a little butter and salt on them and he couldn't be happier. We haven't really given him a mulitvitamin either, we are giving vitamin D now because he ped said he looked a little low and iron when he has needed it.
 
We started a MVI that skips pharmacy reccomended. I forget the name but whatever you choose go with chewable or liquid as they are more easily digestible.
 
Devynn loves brussel sprouts! She could sit and eat a jar of olives or pickles, she LOVES brocolli and cauliflower (raw or cooked). People have always been amazed by the things she eats that most kids wouldn't even look at. My son (18 now) was the complete opposite. When he was younger (up to maybe 5) his gag reflex was so strong that he would gag and end up vomiting if someone's plate with any vegetable other than corn or potatoes was near his plate.
 
Well Jack and Devynn are like peas in a pod. Jack will sit and eat an entire jar of pickles or olives, loves capers as well will eat them by the spoonful. Spinach sprinkled with a little water, salt and pepper and microwaved for about 30 seconds is another favorite. I wish I liked to eat so well...
Yep his younger brother is the same as your older son - corn and potatoes we can get him to eat only the very top of broccoli. Yet he will try just about anything else - latest was octopus, raw oysters.
 
lol yep thats Devynn! lol If we are at any kind of function where they have pickles, cold cuts, cheese plates that kind of stuff... she is in heaven!
My son has grown out of it now, but wow was it ever stressful when he was young. My doctor called him the youngest anorexic he's ever seen when he was 5! He would eat, but just not anything good for him lol
 
Yep, Centrum kids. The gummies are tastier, but compare labels, they usually lack iron and the trace elements like selenium.
 
We do Flintstone vitamins for "fussy eaters". My son desperately wants a non-chewable vitamin but our pharmacist says the chewable ones are better absorbed. So he just has to put up with the taste.
 
We were doing emergenC for multi-vitamins that J would take. We've been experimenting with other things and aren't currently doing any (my dh lost our vitamins after he took them to the nutritionists...). She gets what is in Ensure as well. I guess for now I should get her back on her emergenC. J doesn't like chewables. I tried the DoTerra A to Z, but they do taste like rabbit food smells... :)

Regarding brussel sprouts, Jae is a fan as well and especially loves black olives and sauteed (not mushy) asparagus!
 
Isn't it funny how siblings' eating habits can be so different!?! Stephen still won't eat 95% of veggies, fruit is very limited too - meats/fish, anything 'normal' is okay :eek: My daughter will try ANYTHING and likes most things! I bot canned sardines bcz I'd read here that they are very healthy, knew it was a very long shot with S but tried anyway... He wudnt go near it, daughter now eats at least one can a week! :lol:
 
My daughter was diagnosed five years ago with severe Crohns and has been on all sorts of meds. We found a couple vitamins that took virtually all of her symptoms away and she doesn't take any meds now. I can give you all the details, if you are interested. I am new to this forum.
 
My son has always been our best healthy eater...go figure he's the one who gets crohn's! Even tho he prefers veggies and fruits etc, his body doesn't absorb what he needs. His last lab showed deficient in Vit D, Zinc, and Iron. We give a multi vitamin and then supplements in the stuff he's low in.
 
As a child with crohns I was on flintstones chewables, off and on iron and fish oil and every morning I would have a glass of baby formula. I drank that stuff till the age of 14 mom was worried about me having milk allergies so hey it worked I suppose.

Other then that grew up eating all my veggies and wanting to grow up big and strong! It's been 10 years and the kid next door that grew up drinking soda and living off snack food is 6'4 fit and healthy.. and I am not so much.. Doh! Ah well we all try to do whats best for the future.
 
***Lisa*** said:
My daughter was diagnosed five years ago with severe Crohns and has been on all sorts of meds. We found a couple vitamins that took virtually all of her symptoms away and she doesn't take any meds now. I can give you all the details, if you are interested. I am new to this forum.
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Hi Lisa,

We'd be interested in the details. I'm very uncomfortable with what you stated as being off all medications with some symptoms present is very scary to me, but maybe you can alleviate my concerns.
 
Thank you MLP, I will check them out.

Thank you Twiggy :)

Thank you Henrietta :)

Thank you Carolin, I don't know if Devynn has ever tried a black olive.

It really is amazing Tess! My oldest daughter is like that. She will try and usually likes most things. Devynn is really good at trying things as well.

Thank you Lisa. Sure, I'm sure everyone would be interested :)

Kathy, thats like Devynn. She is my healthies eater for sure! She really is not crazy about junk food.

Muddog, thank you. It seems the Flintstones are still popular. Nope, def not fair! I had a friend growing up who never brushed her teeth. She didn't have a cavity in her head until she grew up. I on the other hand, who took care of my teeth?? At least one cavity every.single.time.
 
I am always nervous about adding anything to Andrew's diet, but I do make him take a chewable A,C and D vitamin. We haven't had much sun for a long time here in Scotland, so the vitamin D is a must. ;)
 
Sarah takes iron, calc with D, B12, and B multi.

Iron because her iron levels are very low.

Calc with D because she keeps ending up on pred and D as levels are slightly low and they are purpose work best when taken together.

B12, her levels were at the low end of normal and the dropping B12 levels seemed to occur at the same time as dropping hemoglobin levels. Started supplements 4 months ago and both b12 and hemoglobin have increased with her hemoglobin being the highest in has been in four years.

B multi, because we were told not to supplement B12 without supplementing the other Bs.
 
***Lisa*** said:
My daughter was diagnosed five years ago with severe Crohns and has been on all sorts of meds. We found a couple vitamins that took virtually all of her symptoms away and she doesn't take any meds now. I can give you all the details, if you are interested. I am new to this forum.
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Hi Lisa and welcome.
We'd love to hear about your daughters story and what vitamins she takes.
 
Hello All:

To followup my previous comment, this is my daughter's story. Let me apologize ahead of time for the lengthy reply, however, I think it's important for you to know the back story.

Rachel was diagnosed with Crohns five years ago when she was 15 and her symptoms were moderate to severe. She lost a ton of weight, she had massive hair loss, high fevers, bathroom issues, you name it. Just making it to high school was a challenge. She has been on all kinds of different meds (too long to list) with the last one being Remicade for just under 3 years. It worked great the first year but then lost its effectiveness and she started suffering with side affects. Her pediatric GI thought increasing her dose to the highest allowed for her age group was the answer, but it wasn't. It just caused her joints to crack & pop, the skin behind her ears were always inflammed, her immune system was so low that she caught every bug that came around and on top of it all, the Remicade did not alleviate her symptoms. We were very frustrated because she was attending college four hours away from home and in order to be able to make it to any of her classes, she had to wear an adult diaper everyday because of the frequent accidents she was having while on the highest dose of Remicade. She has so many embarrassing stories, as do all Crohns & Ulcerative Colitis sufferers.

We decided that it was time to get a second opinion by a non-pediaric GI, so we brought her to a big city hospital near her college in November 2012 and they did a CT Scan along with a colonoscopy. They confirmed that her large & small intestines were completely involved (her small was even more diseased than her large). Her ilieum was involved, too. In fact, her ilieum was so inflammed that they could not even get their small probe to go through the ilieum into her small intestine, therefore, they could not complete the colonoscopy. The GI prescribed Humira and sent her on her way. They sent her the practice Humira needle kit and kept calling to setup the appointment for her first injection, but we decided no more meds! Five years was enough! I mean, why take med after med after med if she is not getting any noticeable relief from her symptoms? She was already eating a very limited diet and we decided to limit her diet even more and even visited with a nutritionist a few times to get their recommendations, as well. We were scared because taking her off meds after being on them for five years was a big risk, but the hard decision had been made.

We were so frustrated at this point. I became obsessed with researching everything I could get my hands on about Crohns and I talked to anyone who would listen to me and even attended a CCFA Crohns Conference that was being held in another state (I'm from a small town and those conferences are no offered in my area). Then, one evening, I attended a short two hour Crohns seminar that was being held near my hometown where a GI was going over the latest meds that were being used to treat Crohns & Ulcerative Colitis. I got talking with a woman there and that one conversation changed everything for my daughter.

This woman's husband is a scientist and many years ago struggled with psoriasis. When doctors could not help him he spent all his spare time researching his condition and he found that taking Vitamin D-3 and Folic Acid which he bought at his local store took away all his symptoms. Many years later his wife (the woman I met) was suffering with a bad flare from her Ulcerative Colitis and nothing her GI recommended was helping. Her husband starting thinking that if the Vitamin D-3 and Folic Acid fought the inflammation that caused his psoriasis, then maybe it would help her. They decided there was no harm in trying it so she started taking the Vitamin D-3 and Folic Acid and in less than one week felt better than she had in years! As time went by, all her Ulcerative Colitis symptoms disappeared and just two months ago had a colonoscopy and her GI said that there is no evidence of Ulcerative Colitis in her colon! How amazing is that?!

They had not shared their experiences with anyone else outside their family until I met her on the night of October 23, 2012 when she stood up and told everyone in the room about her story. The GI played down her experience saying that what helps one IBD patient will not always help another. Anyway, we exchanged contact info and have been keeping in touch since. We had already stopped all prescribed meds for my daughter anyway so we decided to give the vitamins she suggested a try when my daughter came home for winter break at the end of December 2012. Please keep in mind that my daughter had her last Remicade infusion on October 19, 2012.

We have just been absolutely amazed at how wonderful she feels with taking no medication and only taking 5,000 iu's of Vitamin D-3 and 400 mcg's of Folic Acid together every morning! Before she added the Vitamin D-3 and Folic Acid to her daily regiment (she was already taking a multi-vitamin, calcium, iron, probiotics & fish oil everyday) and was having Remicade infusions every eight weeks, she was a mess and we truly wondered how much longer she could continue to go to college, but we were going to do everything in our power to keep her in school. She loves college and she was doing everything she could do to not let Crohns take that experience away from her, even though she was a walking zombie half the time as she very rarely slept through the night when she was having Remicade infusions.

It sounds absolutely crazy, I know, when I hear myself say that just by adding these two little vitamins to her daily routine, it completely turned her health around, but it's true! I am not a doctor and recommend that you talk to your doctor before doing anything, but we are going completely against both of her GI's orders, not giving her any meds at all, and she has her life back! It is truly a miracle!

If your kids are having Crohns symptoms and are not taking any kind of steroid (Vitamin D and steroids do not mix so please do not add Vitamin D if your child is taking any kind of steroid), I highly recommend that you talk with their pediatric GI and consider giving them Vitamin D-3 and Folic Acid. The 5,000 iu's of Vitamin D-3 and 400 mcg's of Folic Acid is what my friend recommends for adults, but children should take less. I am not a medical professional so I don't want to tell you how much to give children, but I think you should consider giving your kids with IBD some Vitamin D-3 and Folic Acid everyday.

The way the scientist explained it to me is that everyone needs Vitamin D and the Recommended Daily Intake (RDI) of Vitamin D is set way too low (400 to 600 International Unites (iu’s) for adults a day). For adults, with skin conditions or IBD, he believes that we should take 5,000 iu's everyday, even healthy adults. Depending on the weight of the child, it should be lower, so check with your pediatric GI on how much Vitamin D-3 they should take. But, taking Vitamin D alone will not work as, if taken alone, it will only stay in your system for about 90 minutes which is not enough time to heal the imflammation in your body. If you take the Vitamin D-3 with Folic Acid, the Folic Acid causes the Vitamin D to stay in your system for 6 or 7 hours which gives it time to absorb into your system and fight the inflammation (i.e., inflammed bowels, inflammation on your skin, etc.). Anyway, that is some of the science behind his discovery.

I just wanted to share this with all of you as I know what you are going through with your children or if you have IBD, what you have to deal with everyday. It seems with the success that my scientist friend, his wife and my daughter have had that he may have stumbled onto something really awesome that can help you or your kids.

I wish you all the best! If anyone else has had good luck with Vitamin D-3 and Folic Acid, please message me as I'd love to hear about your experience!

I will continue to keep your children in my prayers as they, and you parents, cope with this terrible disease.

Take care!

Lisa
 
Thanks for posting Lisa .
I am glad the vitamins are helping.
Are you monitoring her inflammatory markers since lack of symptoms does not mean lack of disease progression?
If its only been since the end of October I would be very hesitant to state the vitamins were " fixing" the Ibd you may be seeing less of the side effects of the remicade at this point.
Not a doc just a mom.
No meds is very risky especially since her last scope she was still do inflamed that the doc couldn't get through
Have you tried LDN??
Alot of folks here have had great success with.
Do you at least have a doc following her still?
Even if your doing diet/supplements only you need to be honest with the doc about it so they get make sure things don't go too far south too quickly.
Crohn's used to have a high mortality rate before meds came along.
I am sure you had time to think about all these things and more .
Just want to make sure new parents realize Ibd needs to be monitored regardless of treatment since it can be deadly.
 
Thank you for posting Lisa, I will mention this to Devynn's doctors. I'm so glad to hear your daughter is feeling better. I have to echo what my little penguin said though. I'm wondering if you are monitoring her inflamatory markers? She is still under a GI's care I assume? If not, I highly advise you to have her checked. It just sounds too good to be true. Not that I don't believe you. But it just sounds too easy. I hope your daughter continues to do well! Thank you again for sharing!
 
Well said MLP. I was thinking the same thing, I'm glad she is feeling well but wanted to echo being monitored Unfortunately with this disease things can quickly go downhill
 
Regarding vitamin D3.

It really is irrelevant how much you take. The rule should be enough to get your level up somewhere between 80 to 100

I had to take massive amounts to get to 80. It took 35,000 iu before I could get my level above 40. It would sink to 20 in the Winter and I was taking 25,000 iu at the time. I also think the addition of vitamin K2 helped raise the D levels.

The important thing is to test your D levels so you know how much you personally need to take.

Dan
 
Hello everyone -

Thanks to everyone for your comments. Both her pediatric GI and the GI who provided us with the second opinion are aware of what we are doing and she is having her inflammatory markers and vitamin levels tested in a few weeks.

I totally agree that this does seem too easy and too good to be true, but this is her reality now and it is wonderful considering what she has had to endure over the past five years. This is all very new to us so as more time passes, I will keep you posted on how things progress for her and I trust you will do the same.

Please let me be clear - I do not condone shutting your GI out when dealing with any kind of IBD as you should always work hand-in-hand with them in order to ensure that you are making well informed decisions about your health or the health of your children.

One last note which I think is quite interesting ... As I said previously, the scientist believes that Vitamin D and Folic Acid help reduce inflammation throughout the entire body. Many years ago he had an X-ray done on his knee prior to having minor knee surgery. Then, about ten years later he had an X-ray done on that same knee as he was preparing to have another surgery. When comparing the two X-rays his doctor was astounded because the X-ray that was taken ten years ago showed signs of arthritis but the current X-ray showed no signs of arthritis at all. How does arthritis just go away on its own? Could it be attributed the Vitamin D and Folic Acid he had been taking for years? Very curious ...

Thanks again!

Lisa
 
Thank you so much for posting this Lisa. Vitamin D does play a role in immune function and there have been some studies about vit D treatment in Crohn's but I don't think this doseage.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2010.04355.x/full concludes
Oral supplementation with 1200 IE vitamin D3 significantly increased serum vitamin D levels and insignificantly reduced the risk of relapse from 29% to 13%, (P = 0.06). Given that vitamin D3 treatment might be effective in Crohn’s disease, we suggest larger studies to elucidate this matter further.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2011.04601.x/full   This geographic study suggests that low sunlight exposure is associated with an increased incidence of Crohn's disease. Further studies are needed to determine if this association is causal. (Sunlight exposure increases vit D production in people)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3367959/ Higher predicted plasma levels of 25(OH)D significantly reduce the risk for incident CD and nonsignificantly reduce the risk for UC in women.

I am definitely going to look into this further.
 
Thanks for posting this info Lisa! I am so glad you have found something to help your daughter!!
 
I have seen lots of studies about Vit D and crohns. I do think there is correlation. But I sure wish it would be so simple to take 2 vitamins...and nothing else. There are soooo many people with IBD...seems like the GI's would try this first. Kinda confusing story for me (no offense intended at all), just there is already so much of 'am I doing the right thing for my kid' and all us parents fought meds at some point and had to give in because our kiddos were so sick. Now I'm questioning my decisions again...ugh.

I want Dusty to weigh in on this.
 
Tesscorm - You're welcome! :ysmile:

Xmdmom - Thanks so much for looking into this! More research in this area is a must! The links you posted are right on point. I look forward to reading your future posts on this topic.

D Bergy - I do think tracking the vitamin levels in your system is key for everyone. Before starting the Vitamin D and Folic Acid, my daughter's levels of D were dangerously low. So low that her GI prescribed 50,000 iu's of Vitamin D once a week, however, I think Folic Acid is the key that unlocks all the healing qualities of the Vitamin D, but more research needs to be done to confirm this.

BriansMom - We each try to make the best decisions possible for our kids based on the information that is presented to us parents. As long as you keep reading and asking questions, you will make the right choices.

Devynnsmom - Thank you for asking the question! We all need to talk these things through.

I guess the bottom line for me is that I am just not willing to wait for all of the research to be completed before trying this, especially since it is working for her. The way I look at it, she can always revert back to taking prescribed meds if her Crohns symptoms return.

This is a great forum! So glad I joined! Thanks, everyone!

Lisa
 
Thanks for sharing Lisa, I appreciate it. A few things:

1. We have a thread on vitamin D located here you may want to read. I'd love for you to share what you posted in this thread, in that thread too if you'd be so kind :)

2. High dose folic acid is somewhat concerning to me. I say this because folic acid and folate are two very different things. Folic acid is the SYNTHETIC form of folate and has been found to inhibit zinc absorption which people with Crohn's are commonly deficient in as well. Folate doesn't do that. Dietary folate is best. If tested and shown to be deficient in folate and you can't get enough folate via diet, then I'm game for folic acid supplementation.

3. I do believe vitamin D plays a role in the pathogenesis of Crohn's disease for many. My theory is that in the broader Crohn's disease puzzle, it is a corner piece. I believe magnesium plays a MUCH bigger role and that just about every single person with Crohn's disease is deficient in magnesium. The problem with magnesium is the serum magnesium test is REALLY BAD. By the way, magnesium is a vitamin D cofactor. The other cofactors are Vitamin K, Vitamin A, Zinc, and Boron.

I believe that vitamin, mineral, and other nutrient deficiencies are an ENORMOUS part of the Crohn's disease puzzle. I'm really glad your daughter is doing better than she was and I'm glad she's still being monitored by a GI. Please keep us updated as to how she's doing.
 
David said:
Thanks for sharing Lisa, I appreciate it. A few things:

1. We have a thread on vitamin D located here you may want to read. I'd love for you to share what you posted in this thread, in that thread too if you'd be so kind :)

2. High dose folic acid is somewhat concerning to me. I say this because folic acid and folate are two very different things. Folic acid is the SYNTHETIC form of folate and has been found to inhibit zinc absorption which people with Crohn's are commonly deficient in as well. Folate doesn't do that. Dietary folate is best. If tested and shown to be deficient in folate and you can't get enough folate via diet, then I'm game for folic acid supplementation.

3. I do believe vitamin D plays a role in the pathogenesis of Crohn's disease for many. My theory is that in the broader Crohn's disease puzzle, it is a corner piece. I believe magnesium plays a MUCH bigger role and that just about every single person with Crohn's disease is deficient in magnesium. The problem with magnesium is the serum magnesium test is REALLY BAD. By the way, magnesium is a vitamin D cofactor. The other cofactors are Vitamin K, Vitamin A, Zinc, and Boron.

I believe that vitamin, mineral, and other nutrient deficiencies are an ENORMOUS part of the Crohn's disease puzzle. I'm really glad your daughter is doing better than she was and I'm glad she's still being monitored by a GI. Please keep us updated as to how she's doing.
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Which foods are high in folate? Is it supplemented enough in EEN with Ensure? How do you know when you are getting enough magnesium? What does "cofactor" mean in this case of Mg being a cofactor of vitamin D?

Lisa, is your daughter getting her vitamin D3 checked to make sure she is getting enough? I have seen one case of vitamin D3 toxicity, but that guy was taking a liquid supplementation equal to about 40,000 units daily :facepalm:. I don't know if taking the folic acid with it would make your dose (which is what I take anyway of vitamin D3 - 5000 units) more potent and give higher levels of D3.
 
Hi David - I'd be happy to share my comments on the other thread! The more thoughts people are willing to share on the topic, the better!

Carolin - Yes, we are having her GI monitor her Vitamin D levels closely as too much or too low are both problematic and we want to ensure that she stays within a healthy range. She took 50,000 units of Vitamin D once a week for a short while .... Never 40,000 units on a daily basis. That is way too much!

Thanks! :sun::sun::sun:

Lisa
 
I found that 50,000 units weekly made me nervous and tense and flared up auditory sensory issues. The 5,000 units daily makes me feel better. Here in Alaska everyone is vitamin D deficient if they stay year round unless they eat a ton of canned salmon.
 
Carolin - I can imagine living in Alaska that you would be deficient in Vitamin D, but I think it's become more prevalent with the extensive use of sunscreen during the past 10-20 years. I've read lots of articles that recommend getting in the sun, without any sunscreen, for 20-30 minutes a day boosts Vitamin D levels but since most of us don't do that, 5,000 units of Vitamin D and 400 mcg's of Folic Acid seems to be doing the trick for my daughter.

All the best to you, Carolin!

Lisa :rosette1:
 
Thanks. I'm so glad it is working for your daughter. It is cheap and nontoxic, what more could you ask for?
 
CarolinAlaska said:
Which foods are high in folate? Is it supplemented enough in EEN with Ensure? How do you know when you are getting enough magnesium? What does "cofactor" mean in this case of Mg being a cofactor of vitamin D?
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Good questions. Think of cofactors as little helpers. They help make something else get their work done. You can read about how magnesium is known to influence/help vitamin D here.

A list of dietary sources of folate can be found here.

Ensure uses folic acid. Enough? That depends on the individual.

How can you tell if you're getting enough magnesium? That's tough. The serum magnesium test is REALLY bad and I wouldn't go by that as it can be normal but you can have negative body stores. Magnesium is the only supplement I personally think people should blindly supplement and work to get more of in their diet (all with a doctors supervision and blessing of course). A few things:

1. You can see the RDA for magnesium and foods high in magnesium here.

2. Add up how much magnesium you or your child get per day with those foods. Then check how much the RDA is based upon age/sex. If you're below RDA (most people are) well, then you're almost assuredly deficient in magnesium.

3. The problem is, magnesium is also lost in great amounts during vomiting and diarrhea. Even worse, the terminal ileum is where most of it is absorbed. So resection or active inflammation there is going to reduce absorption so your RDA would go up a LOT.

4. If you're using a water softener that goes to your drinking water or filtration like reverse osmosis, it's even worse for you as Mg is stripped out.

If anyone checks all this stuff and DOESN'T think they're deficient in magnesium, please share your numbers. As for supplementing, any form but magnesium oxide should be fine. Magnesium oxide won't hurt you, but the body doesn't take it up very well.
 
Just for clarification, if a doctor gives you prescription vitamin D it is not D-3, the form found in your body, it is D-2 which is not the same thing. At least that is true in the U.S.

I prefer to take D-3 since that is what is lacking.

Dan
 
My children do not take a multivitamin. I/we prefer to supplement in accordance with deficiencies.

I don't really know where I stand on supplementing over above normal blood levels but having said that I do prefer that they be at the upper limits of those levels. Of course if there is a compelling case for sustained higher levels than recommended then I would likely go that way.

Sarah: B12 injections every three months for life. Folic acid, she has trouble maintaining acceptable levels without supplementing. Taking 5mg everyday results in incredibly high blood levels, three times a week results in fairly consistent folate blood levels of about 1100-1200nmol/L which is not far from the upper limit of 1400nmol/L. She also takes Vit D3 (2000iu) and Flaxseed oil daily. She is on a raw vegan/vegan diet and I think she also supplements in accordance with this type of diet but I am not sure what she takes.

Matt: Takes Vit D3 (2000iu) and Zinc 30mg daily. His B12 is at the lower end of NRR, being a near consistent 237/238. This is something that he and his doctor need to address as I don't think for a young adult male it isn't even close to being acceptable. Pre surgery his level was 580.

As to the effect deficiencies have on Crohn's? I do believe that a deficiency must impact on the disease process. I don't know that it is the cause of the disease itself but in my mind it does play a role in its progression even if only in that in inhibits the healing process.

Dusty. xxx
 
Dusty

Where did you find the upper limit all folate? I have two children with levels of 2000+. One who has never taken any supplements at all and Sarah has just started having a small amount due to the multi b she taking with b12 tablet but was already above 2000.
 
D Bergy said:
Just for clarification, if a doctor gives you prescription vitamin D it is not D-3, the form found in your body, it is D-2 which is not the same thing. At least that is true in the U.S.

I prefer to take D-3 since that is what is lacking.

Dan
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that is not always true. I prescribe vitamin D3 everyday. what one doc does isn't what every doc does.
 
Vitamin D can help with autophagy, it interacts with NOD2 which tells ATG16L1 to use autophagy to clear bacteria, people with crohn's disease have issues with autophagy so it's likely beneficial to have decent vitamin D level.

What I don't agree with is that it doesn't matter how high you go, it matters because in animals when they test very high or very low vitamin D, the mice age prematurely, they can't swim after a few weeks etc, while mice that have normal vitamin D are fine.

This is a test with VDR KO mice (VDR is the vitamin D receptor gene, KO means knockout, they're genetically modified Toyko mice that have a malfunctioning gene on purpose)

As you can see, the VDR KO mice is in really bad shape after 4 months, same happens with mice really high on vitamin D. Mice that have normal vitamin D levels are fine.

WT is wild type, it's the control mouse that has a normal vitamin D level because it doesn't have the KO gene.

The vitamin D from the sun will be regulated, but if you start taking those really high doses of vitam D orally, you can get too much too. The mice model isn't fair because it's using KO genes and very high doses of vitamin D, but it's a nice model to show that too high vitamin D is likely just as harmful as too low in humans too.

md2fk0.jpg
 
Kiny, have you ever seen someone here with a vitamin D level over 100 ng/mL which is the upper end of the, "Normal" range? I haven't. It's REALLY hard to do.

My question for the mouse study is what is deficient, what is normal, and what is high. And what did they have to do to the mouse to get it high and what level do they think would correlate with people being that high.
 
Yah, the mouse model is unfair because they're VDR KO mice, that Tokyo mouse on that pic can't handle any vitamin D I believe and the other study fed mice much higher than you would give any human. But I think too high would be bad too. Well, just my 2 cents, I realise that the mice model doesn't easily translate to humans, but I just wanted to comment because I believe there is probably a limit in humans too, that is all really. I still try to keep my vitamin D high enough.
 
I was talking to a person who did lab results for me, a genetic tests for a specific gene is like 100 euro. It's likely to me that someone with NOD2, ATG16L1 or IL23, VDR, the autophagy genes would benefit more from vitamin D than someone else. Most people say that genetic testing is not very useful, it will just make you worry more, and I agree because I don't want to get tested, I do not want to know, but I think it would matter if people knew. Someone with the autophagy mutations would likely benefit more from optimal vitamin D. People have said to me not to get tested though, because they know I would just worry more, I would blame my parents maybe, even though it's not their fault, I would blame myself, etc.
 
A bit late to this. Time hasn't been on my side lately.

We use Natures Plus Childrens Vitagels one of the only pills for kids out there. Bc it is a vitagels it allows for good absorption. We like it bc it has more B complex than others. Where this multivitamin is lacking we make up for with supplements.
 
What really catches my attention here is the resolution of Psoriasis with D and Folic Acid. I only wish one at a time was used as the other might not matter.

When I resolved my Psoriasis it was by directly targeting the MAP bacteria with frequencies.
These frequencies are calculated from the DNA sequencing information. Given how specific they are it is highly unlikely to have destroyed any other bacteria other than MAP.

If vitamin D and Folic Acid resolved Psoriasis, and Psoriasis is always caused by MAP, now we really do have something here.

Of course, I do not know that Psoriasis is always caused by MAP. I also do not know for certain that Crohn's is always caused by MAP or that dead MAP bacteria will resolve the disease.

But this does seem to be an important piece of the puzzle, in my opinion. At the very least, we should keep our D-3 at the higher range and try some Folic Acid.

I was not aware there was such a thing as prescription D-3. I apologize for the error.

Dan
 
Last edited:
If the Folic Acid and D is just controlling inflammation, that is pretty important also. That is what is doing the damage.

Dan
 
D Bergy said:
If the Folic Acid and D is just controlling inflammation, that is pretty important also. That is what is doing the damage.

Dan
Click to expand...

Right on, Dan!! I believe that Folic Acid and D reduces inflammation, all inflammation - whether it presents itself as Crohns or psorasis or some other ailment. The combination of Folic Acid and Vitamin D reduces (or completely eliminates) the inflammation, which is why since my daugther started taking 5,000 IUs of Vitamin D-3 and 400 MCGs of Folic Acid, her Crohns symptoms have gone away!

My daughter will be having her inflammation levels tested soon and I will post them when they come in. She is feeling so fantastic that I can only imagine that the test will show that her inflammmation levels are low. So exciting to think that she is feeling so well with no meds -- Only Vitamin D & Folic Acid!

Let's keep this discussion going! The Vitamin D & Folic Acid connection in reducing inflammation in the HUMAN body needs to be persued until valid tests are run that will, I believe, substantiate this finding.

Thanks! We will get there!!

Lisa
 
Lisa, I can't wait for the lab results! I agree that if her inflammation was high she wouldn't be feeling so great. We see the doc in mid Feb...definitely have some stuff to discuss with her :)
 
Hi Brian's Mom:

She is scheduled to have the inflammation test done on Friday so we should have the results within the next week or two. I will post them as soon as the results are in.

The way my scientist friend put it, Vitamin D works on the same TNF receptors as does Remicade. There really is no mystery here. Think of Remicade as outrageously expensive Vitamin D but Vitamin D is all natural without the side effects and Vitamin D works much better.

Vitamin D and Folic Acid works! My daughter is living proof of that! It's still hard for me to believe so I do understand why others are skeptical, but please do continue to look into this, talk with your GI, and consider trying this natural way to treat your son's Crohns disease. Remember, if you try this and it doesn't work, you always have the option of starting up meds again later.

If you do go with the Vitamin D-3, please only buy a bottle with 30 vitamin pills in it because after the bottle is open, regardless of what the expiration date is on the bottle, the D-3 starts to lose its effectiveness after 30 days. You should start a new bottle of Vitamin D-3 pills (5,000 IU's) every 30 days but the Folic Acid (400 MCG's) pills do not lose their effectiveness over time so you can use the entire bottle of Folic Acid.

it was scary, but I had to take a leap of faith with my daughter and I am soooooo unbelievably glad that I did!

Please do not hesitate to message me anytime you have questions or just want to talk. I know what you are going through.

Take care.

Lisa
 
While I have found Vit D and folic helpful, I also want to address your comment regarding your knees. It reminds me of years back when I was having knee trouble. Orthopedic surgeon would hear the clicking, grinding noises, etc. and then next week it was other knee, etc....after months of trying to figure out problem, I discovered it was corn affecting my joints. At one point I was going to movies a few times a week, consuming popcorn, then I would get home and not even be able to go up stairs. I would think it was from sitting too long, etc., then had allergy test from Eastern doc and discovered corn affected my joints. Elminated it and xrays show no signs of problems! So, do not eliminate some kind of food that may also be affecting your joints or inflammation. My knees would swell and be so painful. I am now painfree and workout almost every day!
 
I looked at the Vit D thread David started last night...then searched the internet for Dr Cannell's stuff..etc. While lying in bed I thought of something. Brian did great on Humira for a whole year...then he flared and had to go weekly for 5 months. He flared in July/Aug!! This kid is never inside during the summer. I'm not a big fan of sunscreens because of all the chemicals in them...so I use a health food one that is zinc based. But admittedly rarely use it. So how does this compute with the whole Vit D deficiency? If 20 min=5000 iu.....well he had to be bursting with it...so why the flare? Why the increased CRP and SED?
 
Great question! Just a guess on my part but I imagine vit D as a 'treatment' is like every other treatment for crohns... it will work well for some, maybe not as well for others, may work 'sometimes' and not have an impact at all on some??? This doesn't negate the benefits of vitamin D in general but it seems there are so many variables that cause crohns and/or flares, that no single solution may ever work all the time???
 
Brian'sMom said:
I looked at the Vit D thread David started last night...then searched the internet for Dr Cannell's stuff..etc. While lying in bed I thought of something. Brian did great on Humira for a whole year...then he flared and had to go weekly for 5 months. He flared in July/Aug!! This kid is never inside during the summer. I'm not a big fan of sunscreens because of all the chemicals in them...so I use a health food one that is zinc based. But admittedly rarely use it. So how does this compute with the whole Vit D deficiency? If 20 min=5000 iu.....well he had to be bursting with it...so why the flare? Why the increased CRP and SED?
Click to expand...
I agree with Tesscorm but a few questions:

1. When he goes outside, what kind of clothing does he typically wear?

2. Out of curiosity, how is his magnesium intake as discussed here: http://www.crohnsforum.com/showpost.php?p=586851&postcount=50

3. Is the active ingredient in the zinc-based sunscreen zinc oxide or a different form? When you would use it, how much? A little on his nose or widespread? Does he supplement zinc at all?

I don't think vitamin D is THE solution. It's part of the puzzle in my opinion. An important part but just a part.
 
Brian's Mom, C is the same way he spends his summers on the lake, day in and day out and we live in the South. We intend to be vigilant about sun screen but hard to do with a teenage boy. Also C supplements with folic acid, magnesium and Vitamin D3.
 
Brian'sMom said:
I looked at the Vit D thread David started last night...then searched the internet for Dr Cannell's stuff..etc. While lying in bed I thought of something. Brian did great on Humira for a whole year...then he flared and had to go weekly for 5 months. He flared in July/Aug!! This kid is never inside during the summer. I'm not a big fan of sunscreens because of all the chemicals in them...so I use a health food one that is zinc based. But admittedly rarely use it. So how does this compute with the whole Vit D deficiency? If 20 min=5000 iu.....well he had to be bursting with it...so why the flare? Why the increased CRP and SED?
Click to expand...

Hi Brian's Mom:

He was taking 5,000 IUs if Vitamin D3 but was he also taking 400 MCGs of Folic Acid? The D does will not stay in his system long enough to reduce the inflammation unless Folic Acid is taken with the D3.

I'm curious if you've had his Vitamin D levels tested? If so, what were the results?

Thanks!

Lisa
 
I've never done any research on folic acid (I plan to...:)) but can folic acid levels be tested in bloodwork? How did you determine 400 mcgs?
 
Tesscorm said:
I've never done any research on folic acid (I plan to...:)) but can folic acid levels be tested in bloodwork? How did you determine 400 mcgs?
Click to expand...

400 MCGs of Folic Acid is the standard Recommended Daily Intake (RDI). Everyone should take this dosage every day.
 
Carol,

I have to mention that Maltodextine has been known to worsen Crohns in the lab animals. It is in Ensure.

However, researchers stressed that the findings are preliminary and the tests were conducted in the lab, not in people, so it’s too soon to advise those with the inflammatory bowel disease to avoid maltodextrin.

here is just one source, but I originally read it in the ccfa site.
http://news.health.com/2012/05/21/could-compound-in-artificial-sweeteners-worsen-crohns-disease/

We have not let Baylee use this product since, and try to avoid Maltodextrine as much as possible. When I asked our GI, she said, it was just a product that might help give the nutrients a person might need. I know she also does not respond to every lab test. To me, it was a red flag.
 
David, I do believe Vit D is very important. I can't wait to talk to his doctor because I don't know if they ever tested his magnesium levels. If they did, they didn't talk about it. Is it a special test...one that's not usually on the list?

The sunscreen was zinc oxide based. And he takes a zinc supplement of 30 mg. I would try to put the sunscreen on his ears...nose, and shoulders...when he'd let me. He is such a busy kid and I'd have to find him first! He usually wears a t shirt and shorts outside. But we had a pool and he swam a lot. He sometimes would wear a swim shirt. He's a kid that tans easily and rarely burns. (All my kids have olive skin tone). I wasn't that crazy with the sunscreen cause I'd get lazy with it especially when he protested so much.

Lisa, they haven't mentioned him to take folic acid. I'm going to be asking about that too. His last lab work included Vit D levels and they were just below the bottom range number. Can't find the note I wrote it on. I don't think they test for it in the summer. I'll ask on the 13th tho.

THANKS ALL for taking an interest. I'm glad we all have each other!! :)
 
***Lisa*** said:
400 MCGs of Folic Acid is the standard Recommended Daily Intake (RDI). Everyone should take this dosage every day.
Click to expand...
I respectfully disagree.

Please be careful about blindly supplementing folic acid. At the very least do it under the supervision of your doctor. Folic acid supplementation can interfere with zinc (which Crohnies are commonly deficient in) and the University of Maryland Medical Center cautions about supplementing just one or two of the B vitamins without the others as it may lead to imbalances. In addition, in some cases, folic acid supplementation can mask symptoms of B12 deficiency which is common in people with Crohn's. If you're deficient in folate and have tested as such or are on a folate antagonist medication, then absolutely. But treat this stuff as a medication and do it under the supervision of your doctor and get regular blood tests to monitor levels over time.

In addition, the RDA for many of the kids discussed in this forum would be 150-300 mcg and many here already get ample amounts because many common foods in the USA are fortified with it.
 
Brian'sMom said:
David, I do believe Vit D is very important. I can't wait to talk to his doctor because I don't know if they ever tested his magnesium levels. If they did, they didn't talk about it. Is it a special test...one that's not usually on the list?

The sunscreen was zinc oxide based. And he takes a zinc supplement of 30 mg. I would try to put the sunscreen on his ears...nose, and shoulders...when he'd let me. He is such a busy kid and I'd have to find him first! He usually wears a t shirt and shorts outside. But we had a pool and he swam a lot. He sometimes would wear a swim shirt. He's a kid that tans easily and rarely burns. (All my kids have olive skin tone). I wasn't that crazy with the sunscreen cause I'd get lazy with it especially when he protested so much.

Lisa, they haven't mentioned him to take folic acid. I'm going to be asking about that too. His last lab work included Vit D levels and they were just below the bottom range number. Can't find the note I wrote it on. I don't think they test for it in the summer. I'll ask on the 13th tho.
:)
Click to expand...
Hi Brian's Mom. I was wondering about the supplement as zinc toxicity is a very real thing and can actually mimic a flare and can start at dosages as low as 50mcg. The thing is, not only are the zinc oxide nanoparticles potentially toxic, zinc oxide is absorbed through the skin, unfortunately, I haven't been able to find how much it might increase levels. I hope I don't upset you with any of this, I just thought you'd want to know. :(

Did you have his zinc levels tested thus the supplementation or are you doing that on your own?

There is a serum magnesium test, unfortunately, it's not that great as serum levels can be fine but body stores can be negative. In addition, as this paper suggests, the reference range for serum magnesium is outdated. I believe a lot of people are deficient in magnesium (especially Crohnies) and are being missed.
 
I now think Sarah's anemia was not caused by low iron but b12 masked by high folate level.

We have supplement iron for four years. What I have noticed during this time is that her vitamin B12 dropped and her folate increased to over 2000. This was without any supplementation of folate.

once we started supplementation of B12 her hemoglobin levels and B12 levels have increased to the highest they have been in 4 years
 
Lisa--

I don't understand the connection between Folic acid and Vitamin D
The D does will not stay in his system long enough to reduce the inflammation unless Folic Acid is taken with the D3.
Click to expand...
Can you clarify? Is there evidence that folic acid has an effect on Vitamin D absorption or metabolism?

Thanks
 
Also, for anyone considering Mg supplementation, I'd add the caveat that Mg shouldn't be taken by those with kidney problems unless oked and monitored by a doctor.
 
David,
His labs showed he was deficient in Zinc...thus the supplement. When his labs are ok, they tell me to cease the zinc.
And you are in no way upsetting me. I appreciate all your input.

Catherine, That's interesting. Brian's Labs always show he's anemic. They have had him on iron for around a year. But he's always still a little anemic.

Seems the GI doctors are hit and miss when it comes to vitamins.
 
Thanks so much everyone for all the info in this thread!!! :applause: There's so much to 'know' about vitamins/minerals and their impact on health; having the opportunity to discuss and learn from one another is fantastic!

I've got lots to learn! :study: :study:
 
David, C gets his levels tested for most of the vitamins and that is why we are supplementing. But when you say the test for magnesium is poor, is it that the standard test is poor and there is a more accurate test we can request(I remember this being the case with one of the other vitamins) or is it that's the only test for magnesium? His magnesium hasn't been tested but the other vitamins we supplement is due to tested deficiency or folate antagonist medication.
 
A very interesting thread! Since Andrew was diagnosed, the docs have never checked any of his vitamin levels. I asked for his magnesium and B12 to be checked and they were fine, but will be asking for D to be checked.
 
Hi BriansMom -

His D level is too low at 69. My friend shared the following with me to explain:

20 ng/nl keeps your bones from crumbling and not much more...this is achieved with the US RDA of 400-600IU

80-100 ng/nl is optimal...however there is not a linear function in oral intake and serum levels.

Think about levels as non-linear. There is a bare minimum for the body from which all vitD is used for bone health and blood calcium regulation. Then there is an individualized optimum baseline (probably in the 60-120 ng/nl range) from which bodily functions are vitD optimized.

Blood tests measure a form of vitD known as 25(OH)D. This is what is circulating in the blood attached to vitamin-D binding protein. Yes - there are specific protein carriers in the blood just for vitD. What really matters is that at the target tissue - the intestinal wall vitamin D receptors - in this instance, when the circulating 25(OH)D is activated to 1,25(OH)D3 by the kidney that the lifespan of the 1,25 at the target tissue be prolonged. Folic acid blocks the activation of the genes that produce the enzyme called CYP24a1 which would normally breakdown and deactivate the active hormone 1,25. Ultimately the vitD/folic acid combination increases the time the 1,25 can transcript normal tissue at the site...it makes normal tissue.

Getting yor son's Vitamin D levels in the 80-100 range is key.

Keep up the great work!

Lisa
 
Brian's Mom, ( and Lisa)
The range you listed (70-150) sounds like it might be for 1,25 vitD rather than the usual test 25 vit D. For 25vit D, values over 100 ng/ml are considered excess, making me think you are dealing with another test or different units.

I suggest you check the lab report or ask your doctor. 25vit D is the test that is recommended as it correlates best with health and overall vit D status.
 
According to Dr. Mercola, vitamin D toxicity is often the result of not having enough K2. I take K2 because it helps prevent osteoporosis, but it might also help prevent any problems with D-3 if you get into the higher ranges.

Dan
 
Here is one article on the subject.

"We don't see symptoms of vitamin D toxicity very often. But when we do, those symptoms are inappropriate calcification. That's the symptom of vitamin D toxicity. And it is actually a lack of vitamin K2 that can cause that..."

http://articles.mercola.com/sites/articles/archive/2012/12/16/vitamin-k2.aspx

Basically, from all the info I have read concerning Osteoporosis, you should not be lacking in these vitamins and minerals to keep bones strong along with weight bearing exercise.

Vitamin D
Magnesium
Vitamin K
Silica
Calcium

Dan
 
Lisa,
Not meaning to bug, but we have our appt today. I was wondering what your daughters inflammation rates were from her Friday Labs.
 
Hi Kathy:

Due to the snowstorm on the east coast last week (Nemo), her GI neglected to send in the order for the blood test so I am going to check later this week to make sure they have it and hope to have her blood drawn done on Friday or Saturday so I don't have anything to report yet.

How did your appt go today? Good news, I hope!

Lisa
 
Hi Lisa, I'll bet you can't wait to get the tests done. Brian has been feeling great and his stools been perfect (sorry if TMI) but surprisingly his CRP went up from normal to 1.3 and his SED went from 26 to 24. (Last month he had just had flu so dr thought that is why SED was elevated). The lab results; so wierd cause he also gained like 6 pounds in just a month. (Weight loss is one of his biggest symptoms). Dr was kinda baffled. We're staying at Humira 10 days and redo labs in a month. She sent us directly over to Dermatologist because of a minor rash on his butt. She was worried the Humira might be causing psoriasis. Thank God the dermatologist thinks its NOT that! :) So it was a LONG day. Full of confusion thoughts tonight. And worry.........
 
Catherine said:
Dusty

Where did you find the upper limit all folate? I have two children with levels of 2000+. One who has never taken any supplements at all and Sarah has just started having a small amount due to the multi b she taking with b12 tablet but was already above 2000.
Click to expand...

Sorry I am so late in answering this Catherine. :(

It was the values that use to be quoted on the hospital pathology results. The pathology that we use now does not quote an upper limit so I was just using the 1400 as a guideline for own purposes.

Dusty. xxx
 
Thanks Dusty, our lab doesnot give a upper limit either.

I think there is a problem when the level of B12 is low normal and folate level is high. Can't explain why but it just a feeling I have after looking at a all Sarah's blood tests.

The intesting thing both these blood tests is the two girls with high folate level are the ones low irons levels and lowest hemoglobin.
 

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