Vitamin D and Crohn's Disease

Crohn's Disease Forum

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Mountaingem said:
I've been taking 6,000 iu for two weeks and noticed a huge improvement especially in the joint pain and stiffness. I'm not overly concerned about holding on to too much calcium because Crohn's causes my kidneys to leach calcium; I take hydrochlorothiazide for an off-label usage-to make my kidneys retain the calcium. I found this out during surgery prep; I also can't retain potassium.
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Wow, that's excellent Mountaingem! What a great response! Long may it continue :)

Incidentally my Vit D levels have been up over the last three months according to my last visit to my haematologist, who I had been seeing for a low white blood count. And rather excellently there has been a correlated rise between my White Blood Count Level (now entirely normal) and the Vit D level. He said this may just be a coincidence but stay on the Vit D and Calcium supplements.

I am not on high levels like most on here, I'm on 80IU twice a day, and I have been taking it for some time before the levels went up, but whatever I am doing overall I'm delighted to finally have a "normal" WBC. If the same in 6 months he's going to discharge me from his clinic (fingers crossed).
 
Hi, Have been reading this with interest. Can anyone reccomend a supplement to take and where to buy from in the uk?
Many Thanks
 
Speaking of vitimin D, a dear friend sent me a link to this very interesting article at WebMD. Within the article is the following:

Vitamin D Supplements and Crohn's Disease
Brian Bosworth, MD, of Weill Cornell Medical Center in New York City, reported results on the first 20 people in an ongoing study looking at the effects of vitamin D supplementation on Crohn's disease. All had vitamin D deficiency, defined as blood levels less than 30 nanograms per milliliter (ng/ml) of blood.

They took either 1,000 International Units (IU) or 10,000 IU of vitamin D3 daily.

After six months, average vitamin D blood levels were about 74 mg/ml in the high-dose group, compared with 32 ng/ml in lower-dose group. Levels above 30 are considered normal.

Scores on a standard test that measured the severity of symptoms fell from 7 points to 4 points in the high-dose group. There was no change in disease activity in the lower-dose group; their scores hovered around 6 points. Scores above 7 indicate severe symptoms, according to Bosworth.

The high doses didn't cause any side effects.

http://www.webmd.com/ibd-crohns-dis...southerners-may-be-less-likely-to-have-crohns
 
David said:
Can you please point me to a reputable source that explains why this is? I wasn't aware of the relation. Thank you!

Please do! :)

For the record, the Vitamin D Council doesn't recommend anyone supplement vitamin D with PRESCRIPTION medication as that means it is a SYNTHETIC version of vitamin D (that the company could patent) and will not be near as good as the natural vitamin D3. I can find that article if you like.
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Dude it's on Vit D council website ;)

Magnesium has been found to influence the body’s utilization of vitamin D in the following ways: Magnesium activates cellular enzymatic activity. In fact, all the enzymes that metabolize vitamin D require it. 3 4 Low magnesium has been shown to alter, by way of decreasing, production of vitamin D’s active form, 1,25(OH)2D (calcitriol). 5


Magnesium is needed to exert positive influence over the human genome and may be involved in the genetic actions of vitamin D. Magnesium possibly has a role in vitamin D’s effect on the immune system. 6

Animal studies have shown magnesium is also necessary for vitamin D’s beneficial actions on bone.

http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/
 
So any ideas for best places to get them from? Holland and Barret seem expensive and to be honest not exactly sure what I'm looking for!
 
David said:
Can you please point me to a reputable source that explains why this is? I wasn't aware of the relation. Thank you!

Please do! :)

For the record, the Vitamin D Council doesn't recommend anyone supplement vitamin D with PRESCRIPTION medication as that means it is a SYNTHETIC version of vitamin D (that the company could patent) and will not be near as good as the natural vitamin D3. I can find that article if you like.
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Ok - picked up my prescription - it is Vitamin D2 1.25mg (50,000 unit).....

Generic for Drisdol.....
 
pasobuff said:
Ok - picked up my prescription - it is Vitamin D2 1.25mg (50,000 unit).....

Generic for Drisdol.....
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I would personally suggest getting some natural D3.

Vitamin D3 (cholecalciferol) is the type of vitamin D the body naturally produces in the skin in response to sun exposure. Vitamin D2 is produced naturally when fungi (yeast or mushrooms) are exposed to ultraviolet light from the sun or to artificial UV light.

Scientific studies have demonstrated the bioequivalence of vitamin D2 and D3 in forming 25(OH)D when daily consumption of either precursor occurs over a minimum of 6 weeks 10. There is other evidence that the body has preference to D3 over D2, showing in these studies that the body more readily uses D3 when it has both forms in the body, and that D3 is more potent than D2 for producing 25(OH)D 11.

Although both D2 and D3 are effective for raising blood levels of 25(OH)D, the Vitamin D Council believes that vitamin D3, as produced in human skin, is the more natural precursor, and recommends supplementing with vitamin D3. Vitamin D3 supplements are not vegetarian and are not likely to be derived from American products. If an individual has ethical concerns over D3, D2 can be an effective replacement.
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Source.

Although many doctors are still prescribing vitamin D2, vitamin D3 is the preferred form for treating deficiency and is what is recommended by the majority of the experts as well as the Vitamin D Council.
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There are also prescription forms of vitamin D, such as synthetic calcitriol and vitamin D analogs. Vitamin D analogs are synthetic compounds based upon variations of the naturally-occurring vitamin D metabolites.

High dose calcitriol use has been known to increase risk of hypercalcemia. Vitamin D analogs are seen as a way to achieve the beneficial effects of calcitriol without this risk.

Pharmaceutical vitamin D should never be used to treat vitamin D deficiency.
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Source.
 
Climate Tied to Inflammatory Bowel Disease Risk
Study: Crohn's Disease, Ulcerative Colitis Less Likely in Women Living in Sunnier Regions

Jan. 11, 2012 -- Living in a sunny climate appears to reduce women’s risk of developing inflammatory bowel disease, a large new study shows.

An estimated 1.4 million people in the U.S. live with an inflammatory bowel disease, either Crohn’s disease or ulcerative colitis.

Both cause persistent diarrhea, abdominal pain and cramping, fever, and sometimes rectal bleeding. Symptoms can become very severe and sometimes require surgery.

Yet little is known about the causes of these diseases, which are thought to involve a dysfunction of the immune system.

For the new study, researchers combed through data on more than 238,000 women taking part in the long-running Nurses’ Health Study, which began in 1976.

The study collected information on where the women were living at birth, age 15, and age 30. It also recorded any diagnosis of an inflammatory bowel disease up to 2003.

Researchers also followed up with women who reported having inflammatory bowel disease and verified their diagnoses through medical records.

They found that women who lived in Southern regions that got a lot of sunlight had a 52% lower risk of being diagnosed with Crohn’s disease by age 30 and a 38% lower risk of getting ulcerative colitis than those who lived in Northern regions.

That result held up even when researchers tried to rule out other things that might increase a person’s risk for an inflammatory bowel disease, like having a family history.

“The differences are pretty drastic. That’s what surprised us the most. Especially when it comes to Crohn’s disease. We’re seeing a 40% to 50% reduction in risk,” says researcher Hamed Khalili, MD, a gastroenterologist at Massachusetts General Hospital in Boston.

The study is published in the journal Gut.


http://www.webmd.com/ibd-crohns-dis...nflammatory-bowel-disease-risk?src=RSS_PUBLIC
 
Well - have my D2 sitting here to take (I paid for i, so might as well take it!)...have D3 at home....AND am heading to (hopefully) sunny Florida in 2 days!!!.....

Still haven't gotten my lab results from my bloodwork - maybe I'll call and ask if they can be faxed to me....
 
What a jerk. The Dr. Commends the authors of the study then states there is no evidence supplementing with vitvd will help because miners have lower rates of inflammation? WTF? More like he doesn't want to lose business by people being healthy. The earth is flat until we have enough scientific studies that say its round. SMH.
 
I got some paperwork from my Drs' office yesterday - and it shows my Vitamin D level back in Sept was 19.2.......waiting for the danged release form to be sent to me so I can get my current results!
 
After reading this thread, I asked my GI to check my Vit D levels. Apparently, where i'm from, Dr.'s aren't allowed to test for Vit D (except under special circumstances or something) because the assumption is that everyone is deficient. Kind of depressing that our weather is that bad... ;) He said to go ahead and take it but didn't give me any guidance at all. I'm guessing the 1000 IU tabs from the supermarket aren't going to cut it..
 
I just recently had more blood work done. I was under the impression that my D levels would be checked. Nope!

I thought it was a mistake so I asked the nurse to double-check with my GI because I feel that knowing my D status is important. Apparently insurance companies are not paying for it anymore unless there is a "good enough reason".

I thought that proper D levels were important for Crohn's sufferers moreso than the general population. Seems like a good enough reason to me.

My GI office told me to try to get it done at a GP. They said that maybe someone in the GP's office would know how to code it in a way that would get it covered. Sounds like BS to me.
 
My GP does a lot of bloodwork at my yearly physical and D is included. My insurance covers that and I have a high deductible plan.
 
My guess is because everyone under the moon is getting it done. Vitamin D Deficiency is the new fad. It's all over the radio and internet. Now, this is a good thing as so many are deficient but it's no doubt costing insurance companies millions. Of course, proper supplementation would no doubt save them millions if not billions over the long haul, but we must think about this and next quarter's income, right? </sarcasm>

A diagnosis of Crohn's Disease should be more than enough reason for them to approve the test especially considering how much money it can save the insurance companies if a Crohnie properly supplements if deficient. Somebody, somewhere got promoted to their level of incompetence and is making terrible decisions that affect many. Grrrrrrrr.
 
Yeah. My D was checked last year but not this year.

If I can't get it ordered properly from a GP then maybe I'll get lucky and be able to get covered for it net year :rolleyes:
 
So, I finally have my D numbers.

A year ago, my D level was at 25, which is insufficient. I started taking 6,000 IU of D3 daily with my breakfast.

My D is now up to 50!

Yay :)
 
That's great! Good for you :) Have you been able to correlate the increased vitamin D levels with any changes, positive or otherwise?
 
Thanks! :)

Well, I had some other blood work a couple months ago that showed that I did not have any inflammation so, I suppose that's a positive change that could definitely be related :D
 
Keep in mind that checking magnesium blood levels is not adequate for determining if you are magnesium deficient.

Just a little anecdote about myself. I first found out by my vitamin D deficiency about 3 years ago when I was having back problems. An X-ray of my back was carried out to which the doctor noted that the spacings between my vertebrae were quite large. He said this was indicative of vitamin D deficiency. Well, fast forward to three weeks ago...I finally had my vitamin D level checked...17. So, I am currently on 2000 IU per day. I have noticed that I do have more energy and I feel more elated than normal. By the same token, I have also noticed more anxiety, an increase in blood pressure and an increased frequency of esophageal spasm. Magnesium deficiency causes muscle spasms. Increasing vitamin D also increases your need for magnesium - thus making an existing deficiency in magnesium more advanced or a borderline deficiency more definitive. So, long story short, I am taking 400 mg of a magnesium.

Magnesium with an amino acid attached is much better absorbed into the body. In other words go for magnesium lactate, magnesium citrate, or magnesium aspartate. Avoid magnesium oxide...it has been shown to be virtually ineffective.

http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/
 
I increased my Vit D supplementation in February as levels were low. I proceeded to spend the next 2.5 months throwing up. Figured, eh, it's the Crohn's. It was the Vitamin D. So now I am drinking lots of milk and going out in the sun... ;)
 
Hi David: Tried 2 different brands, both liquid per Dr instructions. I'd been taking a lower dose of Vit D in a gummy form for about a year prior so I will return to that once I have a "rest" from the supplements.
 
Hrm, I sure hope not, David! Appreciate the heads-up about that condition to be sure. :yfaint:

I'm booked for bloodwork soon to double-check current D levels, etc. My mom is quite sensitive to supplements (cannot even handle a multivitamin or calcium supplements) and although I can take many things without issue, perhaps I am simply sensitive to too much Vit D.
 
Mine was just checked and was 71.6 ng/mL which my doctor said was "awesome." I had been taking 4000 iu through the winter, but I think i'll cut back to 2000 now.

Note: I do not have confirmed IBD.
 
Matt received his latest blood results yesterday and his PO4 was only slightly elevated at 1.47 with a reference range of 0.80-1.40.

Anyway he now goes to a new lab and their Vit D reference range is...50 - 200 sufficient... and Matt's level is 85. :)

Now with a quick whizz around the net it would seem that too much Vit D can cause an increase in PO4 and I certainly wouldn't think that 2,000 iu's a day is excessive. Of course there are other causes with diet being the another possible one in Matt's case but I don't see him consuming excessive amounts of the foods likely to cause a problem. Looking at his old results his previous lab didn't report PO4 levels.

So just curious if Vit D supplementation is the cause, anyone else notice an increase in PO4?

Dusty. xxx
 
Hi Dusty,

Did they test his calcium, PTH levels, and do any kidney function tests as well?

The 50-200 reference range for the vitamin D, I'm not familiar with that. What unit are they measuring it in so I can do a conversion.
 
Hey David,

He has not had any thyroid testing done. UEC's and LFT's are done routinely, his Calcium is normal at 2.45 mmol/l (RR 2.13-2.63) and his Urate is just above normal at 0.43 (RR 0.18-0.42). All other renal functions tests are well within normal limits. I assume his slightly increased Urate is due to his TI resection and the resulting issue with the reabsorption of Uric Acid back out of the blood and into the bowel.

The assay for Vitamin D has only recently changed in Australia. This is quoted directly from the report...

Serum 25(OH) Vitamin D - 85 mmol/l

Suggested decision limits for Vitamin D status:

Sufficiency 51 - 200 mmol/l
Mild deficiency 25 - 50 mmol/l
Marked deficiency <25 mmol/l
Toxicity >250 mmol/l

References: Vitamin D and health in adults in Australia and New Zealand:
https://www.mja.com.au/sites/default/files/issues/196_11_180612/now10301_print_fm.pdf

The Diasorin Liason chemiluminescent assay has replaced the Siemens Advia Centaur for vitamin D. Please note variations compared with earlier patient assessment may occur.
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Dusty. :)
 
Hey Dusty,

Are you sure that's mmol/l and not nmol/l?

Studies indicate that for proper health, serum vitamin D levels should be a minimum of 50 ng/mL (125 nmol/L), with optimal levels falling between 50-80 ng/mL (125-200 nmol/L). These values apply to both children and adults.
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Source


When it comes to nutrients, I absolutely love the Linus Pauling Institute at Oregon State. They have a good writeup on Phosphate here that you might want to read if you haven't already.

:Karl:
 
Yikes! Yes nmol/l! That will teach me to post when my brain isn't engaged. Hell I even saw that it was nmol/l in the referenced article and it still didn't click! Won't be long now! :lol:

Thanks for the link. :)

Dusty. xxx
 
Based upon his vitamin D levels Dusty, I think Matt needs a lot more than 2000iu of vitamin D per day :( I understand your concern about PO4 but from what I have read, the increases due to vitamin D are usually at huge levels and that might not even be what's causing it.

Maybe, have him consider a vitamin D that has cofactors included as well which are:

Magnesium
Vitamin K
Vitamin A
Zinc
Boron

I love this product though I don't know if you can get it down there.
 
David, I had been taking my vitamin D3 for 90 days now, and finally got my GP to do a blood work up last week. Just got the results today. The way they list it is a bit confusing to me, but think I am doing right supplementing, when I look at the results....

Vitamin D 25-OH Level *55 (25-80-)
Vitamin D, 25-OH, D2 <5
Vitamin D, 25-OH, D3 55
 
If I am reading it correctly and your result is 55 on the 25-80 reference range (which would be in ng/mL) then yes, you're doing great! :)
 
I am glad supplementation is working for many here at the forum. It seems to do nothing for myself.

I have never heard of someone being unable to process oral vitamin D3, but even 10,000 iu a day has no effect on my blood level.

Sunlight does boost it up luckily, so I should be good for the Summer.

I am going to try using it with Coconut Oil this coming Winter. Maybe that will help if it is an absorption problem?

Dan
 
Dan,

10,000iu should definitely change your level. If not, then all I can think of is it's an absorption problem (coconut oil or a different brand might help) or you're severely deficient in one/multiple of the cofactors I listed above.
 
Hi,
I have just been told by GP that i am deficient in vit d. I cant understand how that can be. I start the day with fortified cereal with milk, eat oily fish twice a week, eat yoghurts daily avoid eggs like the plague, and recently have had 3 months of UV light treatment for Psoriasis.

Surely that would be enough?
 
The UV light treatment. Do you know if it was UVA or UVB rays? If it was UVA, it wouldn't do anything for your vitamin D levels. Or maybe you were VERY low before and that started to bring you up.

The other stuff wouldn't provide near enough vitamin D.

Do you know what your specific level tested at?

Did they recommend a specific supplement/dose for you?
 
I belive it was UVB light that i was exposed to. Im not 100% sure i will check it out on Monday.
I have put in the perscription for vitamin d capsules at the pharmacy, but he has told me they dont keep in stock and will have to order it in. I will collect them on Tuesday.
What is the recommended dose for someone in my situation?
Ive just been diagnosed with fistulas and have to meet with Gastro team this week to discuss which of the new biologic drugs they are going to use, or if im gonna get setons put in place first.
 
The dose would be somewhat dependent upon your actual vitamin D level. For example, we sometimes see people with crazy low levels like 4-10. I think for situations like that, something like 5000iu per day and a 50,000iu once per week would be good to get the levels up fast. For many, 5000iu is going to be a pretty good number. But there are many variables at play and you want to get tested somewhat regularly to make sure you're responding to the dosage and to fine tune how much you need. You don't want more than you need and of course don't want less than you need. In addition, there are vitamin D cofactors which I'm happy to elaborate on if you're interested.
 
Thankyou David, if you could elaborate on the co factors for me that would be helpful.
I want to make sure that i give my body every chance of healing, i know that sometimes there are useful tips to help my body absorb the essential vitamins and minerals that doctors dont usually tell you about.
Im really aprehensive of taking these new biologic drugs, i havent been on any medication for 7 years apart from Colestyramine. Maybe thats why im in the situation im in now?
 
Vitamin D cofactors are:

Magnesium
Vitamin K
Vitamin A
Zinc
Boron

The most important of all those is magnesium which Crohnies are commonly deficient in. Diarrhea and fistulae increase the chances of magnesium deficiency as well. This is part of the reason I like this supplement, because it includes all of them minus the A which I'm not a fan of for Crohnies.

Is a lack of medication the reason you're in the position you're in now? Possibly, but you may have ended up in the situation you're in now regardless. Who knows. Either way, don't beat yourself up over it if you are, instead focus on getting well now :)
 
I was dx with Crohns end of June. I don't well as of last time i had bloodwork. I wasnt deficient in vitamin D. However i am now wondering if my 7 year old daughter may have Crohns. She will run a fever about once a month for a about a week. We've done bloodwork and everytime she is severely deficient in vitamin D . Doctor has her taking a multi vitiamn and on top of that 2000 ui of vitamin D. So now i feel like i need to get her tested for Crohns.
 
Vitamin D deficiency is rampant in the general population as well, it doesn't mean Crohn's. If she has other symptoms, then yes, I'd get her tested. But D deficiency alone isn't cause for alarm other than you want to rectify it. I theorize that vitamin D plays a partial role in the pathogenesis of Crohn's Disease. Someone may have the genotype for Crohn's Disease so maintaining optimal health, in part by having high levels of vitamin D may delay or avoid expression of those genes. Just a theory of course :)

If possible, get her out in the sun a little each day without sunblock and not completely covered in clothing. It's much better :)
 
Hi Jonny O,

This flare has been complicated, not like my past flares, as i have had a remission for 7 years since the removal of my terminal illeum.
It has been months since i started feeling unwell, and i had a short course of antibiotics when the hospital A&E suspected Lymes disease.
The antibiotics made me feel better within 2 days! But it was short lived i started to feel ill again as soon as i stopped.
From what i have read i may need to take some sort of antibiotic before i start on the biologics.
 
Cipro flagyl pit me in remission. My friend was told to go on biologics and was also put in remission with antibiotics. His blood levels are all normal as well as bowel movements.
 
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Gosh, thanks for the information. I have to see the Gastro team this week, so i will ask about trying the antibiotics first and holding off the biologics.
Thanks for all your help, it gives me more confidence in making a decision that will benefit me more, and not just take the run of the mill medication drill.
 
I have been fighting with my GP for months asking him to put me on 50,000 units weekly.When they tested it in January it was 21 and now in July it is only 22 and thats taking 10,000 units daily!After I told him 50,000 units twice a week is the only thing that has brought my levels up in the past, he agreed to put me on that dosage for 6 months.I can't wait to get it in my system, I feel so much better when I'm not so deficient! :)
 
Dixiedoll,

I'm surprised 10,000iu didn't raise your levels. Were they capsules with oil or more of a plain tablet?

I'm glad your GP finally put you on the 50,000iu if that's what helps you :)
 
I am guessing that the GP gave a prescription for D-2 not D-3. As far as I know there is no prescription form of D-3.

I copied a post from another forum, as it pertains to what is referred to as "Vitamin D Resistance".

To sum it up, absorption or conversion problems can be caused by several factors. Magnesium deficiency, poor fat absorption, or not taking it with fats.

I doubt I am Mg deficient since I have taken a Mg supplement before and it had no effect on my D levels. I also presently get 500mg from a whole food multivitamin. I also take vitamin K2 since I was on Prednisone for a longer time, and do not want my bones to become brittle.

Poor fat absorption is likely in my case.

Here is the post I ripped off.

Dan

Quote:
(NaturalNews) As more people begin to realize the amazing health benefits that Vitamin D has to offer, more people are naturally beginning to get more vitamin D, either through supplements or sunshine. The downside of this increased intake, however, is that more people are having adverse reactions from Vitamin D. What most people are not aware of, though, is that most of these so-called 'Vitamin D Side Effects' are not problems with taking the vitamin itself, but are actually problems with not getting enough magnesium.

Vitamin D, just like all other nutrients, works in harmony with several other nutrients to perform its many functions. Most importantly, vitamin D requires and 'uses up' magnesium to convert from supplements or sun into its active form in the blood.

As such, it is a big mistake to simply take large doses of Vitamin D without taking the need for magnesium into consideration. Yet this is exactly what is happening in most cases and it is causing a lot of people to have problems that they believe are due to side effects of Vitamin D- or even worse they believe they are experiencing an overdose. Such a huge number of people have subtle magnesium deficiency that some researchers and doctors are calling magnesium deficiency an epidemic, and anyone with even a mild or 'subclinical' magnesium deficiency will have this deficiency amplified when Vitamin D is taken. This is creating some uncomfortable 'Side Effects of Vitamin D' that are actually symptoms of an induced magnesium deficiency! Some of the magnesium deficiency symptoms being attributed to Vitamin D are:

Headaches
Insomnia
Jitteriness
Muscle Cramps
Anxiety
Heart Palpitations
Constipation

While there are always going to be those who simply can't tolerate taking Vitamin D supplements for one reason or another, the good news is that the vast majority of these problems can be prevented and even reversed by getting clinically significant amounts of magnesium - while you are getting your Vitamin D from pills or from the sun.

Vitamin D Absorption Problems

Conversely, it's also true that taking Vitamin D may not raise blood levels in those who are magnesium deficient. In many cases, both the Vitamin D deficient person and their doctor believe that they are having 'absorption' problems. This lack of knowledge about the need for magnesium ends up causing serious issues such as:

1) A lot of fear being generated that an underlying serious medical problem exists
2)Unnecessarily high dosages of Vitamin D that further worsen the magnesium deficiency
3)Thousands, and sometimes tens of thousands of dollars, being spent on unnecessary medical testing to find the 'absorption' problem
4)The underlying magnesium deficiency not being found because testing for magnesium levels is not useful in determining need for the nutrient

This leaves many people still low in Vitamin D and believing that they are toxic or allergic to Vitamin D. This belief is being encouraged by practitioners and websites that are unaware of this intimate connection between these two nutrients and who don't have a solution for those who are suffering. Unlike drugs, nutrients are interconnected with one another and rarely does someone have only One nutrient deficiency completely in isolation. But as Vitamin D testing is becoming more common, people are being treated with large and sometimes massive doses of Vitamin D without taking into consideration their need for other nutrients. In particular, the need for sufficient magnesium is critical to avoid some of the uncomfortable problems that are often falsely attributed to being Vitamin D side effects or overdoses.

Resources

http://www.springerlink.com/content/n92g57j9k00ul822/
http://www.easy-immune-health.com/vitamin-d-absorption.html
http://www.ajcn.org/cgi/reprint/29/8/854.pdf
 
deb123 said:
Gosh, thanks for the information. I have to see the Gastro team this week, so i will ask about trying the antibiotics first and holding off the biologics.
Thanks for all your help, it gives me more confidence in making a decision that will benefit me more, and not just take the run of the mill medication drill.
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My friend was about to get on the humira train but took antibiotics for two weeks and is totally normal. Same for me. I think it's worth a try but you need to take them for at least ten days and cipro and flagyl not just one or the other. My friend took Xifaxan for two weeks and then another antibiotic for back pimples and he is totally normal, no flare, blood work normal. It's seriously crazy how fast it worked for me. I went from bleeding out my ass ten times a day to normal in 3 days.
 
Ive written lots down so i shall be prepared to bombarge them with questions when i finally get seen.
Thanks so much
 
about a year and a half ago my dr checked and found that I was low in B12 and D. Been taking abt 2000 icu each since. My energy levels were majorly increased but it didnt stop the crohns, was diagnosed with it May 28 2012. Levels were low to med when I went to the hospital but in range.
 
Sherry, I wouldn't expect it to stop the Crohn's Disease, but it can definitely help along with other treatments. However, I suggest getting tested for both again (and getting the actual numbers) to make sure that your dosage is putting you in the optimal range for each.
 
JohnnyO said:
Cipro flagyl pit me in remission. My friend was told to go on biologics and was also put in remission with antibiotics. His blood levels are all normal as well as bowel movements.
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How much cipro and flagyl were you on and for how long?

I just started taking 250mg of cipro since entocort isn't working. The GI put me on a low dose because cipro can affect joints when on entocort.
 
nogutsnoglory said:
How much cipro and flagyl were you on and for how long?

I just started taking 250mg of cipro since entocort isn't working. The GI put me on a low dose because cipro can affect joints when on entocort.
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500mg cipro and 500mg flagyl x2 per day x 10 days. Low dose won't cut it. I have noticed some tendon sensations but nothing bad and my crohns symptoms are gone.
 
David said:
Dixiedoll,

I'm surprised 10,000iu didn't raise your levels. Were they capsules with oil or more of a plain tablet?

I'm glad your GP finally put you on the 50,000iu if that's what helps you :)
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More of a plain tablet.However the 50,000 units I got yesterday are more of an oil capsule.
 
David said:
Vitamin D deficiency is rampant in the general population as well, it doesn't mean Crohn's. If she has other symptoms, then yes, I'd get her tested. But D deficiency alone isn't cause for alarm other than you want to rectify it. I theorize that vitamin D plays a partial role in the pathogenesis of Crohn's Disease. Someone may have the genotype for Crohn's Disease so maintaining optimal health, in part by having high levels of vitamin D may delay or avoid expression of those genes. Just a theory of course :)

If possible, get her out in the sun a little each day without sunblock and not completely covered in clothing. It's much better :)
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I've heard Vitamin D deficiency is more common in the upper Midwest regions.
 
I followed a link by David regarding the Vitamin D supplement, and i dont think you can buy it in the UK. I collected my perscription from the Pharmacy today, and it 5000 of D3, but it doesnt have any of the essential co factors. Does anyone know of a suitable D3 supplement i can buy in the UK ? The pharmacist said that you could buy the magnesium and zinc separately, but Vitamin K is perscription only.
 
I've found I react to most D supplements except the liquid droplet kind. I self-administer up to 10,000 IU when I feel like I need it - more often in the winter time. 50,000 IU at one time seems excessive and could potentially set a person up for a allergic reaction in a sensitive individual.
 
Have any with ibd here experienced taking a sublingual as opposed to tablets or drops make a difference? Personally I use Dlux sublingual spray as the sublingual route( glands underneath the tongue ) allow the Vit D to go straight into blood stream and by pass the intestinal route. I guess this would help many of us who have ibd or malabsorption issues. I used to take the drops in olive oil and caused more cramps.
 
I have been a long time patient with crohn's 37 yrs. I was tested for vit. d deficiency only a couple of yrs. ago. Can you believe my level was "zero". I began taking super vit. d. I am having as flare now as I had a bad cold, then shock for atrial fibrillation. The crohn's had nary a chance. They told me to stop all vits. for now as I am on blood thinners. I just don't know if I should take a multi and my D or not.
 
Here in the UK if you are severely deficient you are given an injection of 300 000iu of inactive ergocalciferol and then advised to take supplements
 
I just recently had my son's vitamin D levels tested and the nurse just called today with the results. She said that even though his results were in the normal range the GI doesn't like to see them that low. His level was 32 and the GI reccomended he started taking a supplement. In the blur of the phone conversation I didn't think to ask certain questions like(these may seem silly but I honestly have no idea) should these be D2 or
D3, is there a certain form that is more well absorbed(son's CD is in TI but no symptoms since starting Remicade) or a certain brand that anyone reccomends over another. The GI wants him to take 2000 units a day. I'm going to wiki for info on the site, thanks for any advice!
 
David said:
Vitamin D cofactors are:

Magnesium
Vitamin K
Vitamin A
Zinc
Boron

The most important of all those is magnesium which Crohnies are commonly deficient in. Diarrhea and fistulae increase the chances of magnesium deficiency as well. This is part of the reason I like this supplement, because it includes all of them minus the A which I'm not a fan of for Crohnies.

Is a lack of medication the reason you're in the position you're in now? Possibly, but you may have ended up in the situation you're in now regardless. Who knows. Either way, don't beat yourself up over it if you are, instead focus on getting well now :)
Click to expand...

David, do you think this product by itself would be adequate, or do you think additional magnesium would be suggested? I note that this product only includes 50% rda for magnesium. I've read about magnesium supplements, stating that malate & glycinate are good forms, but when I check the sites like Amazon and even the Biotechpharmacal site, there are many products that are "chelated with amino acids", and I wonder if that is even better, or not necessarily so?
 
Mark, I think it would depend on each person. If someone is deficient in magnesium then no, it probably wouldn't be enough. If their magnesium levels are already good, then it should be fine. It comes down to testing.

As for the chelating with amino acids, I don't know anything about that, sorry :(
 
Hi Clash,

My vit D was zero and my gastroenterologist put me on a prescription Vitamin D2 - 50,000 IU a week. I also take 6,000 IU D3 a day. I was still in the 30's range, then went down again. I have not had it tested lately, but will shortly. I do not know the diff. between D2 and D3, but as I said he gave me the megadose of D2. Hope this helps.
 
Thanks gconner! What form is it in? Does it look like a tablet or like Vitamin E, you know with the liquid in it? Did he suggest you take it with anything, certain type of food and such?
 
Hi Clash, it is a small green pill like a vit. E pill, soft inside, easier to digest as you know. I take mine before I go to bed, but I am thinking with food might be better. gc
 
Clash,

32 is considered borderline- For every 1000units you take your levels will be increased by 10.

I was at this level of 32 in March 2012 also but have been taking about 2000-3000 units, via a spray which has 1000iu each spray. Whatever Vitamin D supplement you purchase it is highly recommended to go for a D3 rather than D2 as it basically lasts longer, and this is now widely advocated.

Also, there are many types of supplements. But from personal experience, I have found that a sublingual spray was more effective at the same iu's daily than the liquid drops. I havent had the tablets though. I have Malabsoprtion issues however, so I can see the logic of why Vitamin D provided through the spray is better for my body.

Maybe have a search on a search engine for "sublingual vitamin d3 spray in [your area/country/city]".

Good luck!
 
Sorry I would like to re-clarify 30nmol/L is considered deficient in the UK (Nothern Hemisphere Country) and therefore 32 would be borderline
 
Thanks so much, the GI said it was borderline according to the reference numbers but that the GI didn't like to see it that low. I'll Google vitamin D3 forms and see what comes up! Thanks again
 
gconner said:
Hi Clash,

My vit D was zero and my gastroenterologist put me on a prescription Vitamin D2 - 50,000 IU a week. I also take 6,000 IU D3 a day. I was still in the 30's range, then went down again. I have not had it tested lately, but will shortly. I do not know the diff. between D2 and D3, but as I said he gave me the megadose of D2. Hope this helps.
Click to expand...

D2 yikes! You should ask your doctor if he/she can prescribe D3, D2 is synthetic, D3 is natural.

You can read more why D3 is far superior than D2.
http://articles.mercola.com/sites/articles/archive/2012/02/23/oral-vitamin-d-mistake.aspx
"Research shows vitamin D3 is approximately 87 percent more potent in raising and maintaining vitamin D concentrations and produces 2- to 3-fold greater storage of vitamin D than does D2. D3 is also converted into its active form 500 percent faster."
 
I got my results back today for my vitamin D test. 83.1 ng/ml.

:banana:

This is strictly from sun exposure, zero vitamin D supplementation. I work outside farming my backyard so get plenty of sun. But what I do is if I know I'm going to be in the sun a lot or just get in from a lot of sun exposure, I take a vitamin K2/1 supplement and a magnesium supplement to ensure I have plenty of cofactors. I figure that evolutionarily, we'd walk around in the sun hunting/gathering and come across food high in the co-factors during that time. So I try to recreate that.
 
C spends a lot of days out in the sun but as he is on Remicade I've had him slathered/sprayed with Sun screen because I thought I read there was a heightened risk of non melanoma skin cancer with Remi and doesn't sun screen block vitamin D process/production?
 
Ok so I am ordering the vitamin D supplement from biotech. It is the one mentioned by Dr. Cannell(sp?) and noticed that three capsules are 5000 iu and C was directed to take 2000 iu daily. I looked at different forms but it is a bit overwhelming at all the choices and I want to make sure I get all the co factors for vitamin D...any suggestions? Wondering if C could could take 2 and get 3333 instead of 2000. At 15 he weighs 128 if weight is a factor in dose.
 
What was his vitamin D level last time he was tested?

*edit* Ah, I see his level is 32.

I think two a day would be fine (and would prefer more than 2000iu) BUT I'd ask your doctor for sure. Explain exactly what you want to put him on and detail the cofactors as well.
 
Thanks, David. We have an appt. in two weeks with ped gi. he approved the vitamin D levels test when I requested it and also wanted him on vitamin D when results came in but it was the local GP that did the blood draw so I asked him if he could run B12 and folate as well...GP didn't see a reason to because it wasn't a common issue in CD....whatever. I am going to request the other vitamin levels checked and bone age study at ped GI in two weeks he seems more open to what I request. I'll discuss vitamin D supplementation then... I've already printed all the studies and info from this site. Thanks so much for all of your hard work!
 
Your GP said folate and B12 wasn't a common issue with Crohn's Disease? REALLY?

:facepalm:

We could cite countless articles but in the end, this poll says it all. And that's mostly based upon serum B12 reference ranges that are terrible. The actual deficiency numbers are very likely much higher.
 
Yes he also wasn't sure why C needed D checked since he lives in the south. I explained the sunscreen and vitamin d process being afeected and cd'ers being prone to deficiency due to malabsorbtion and he told me to be careful with medical googling! Ughhh aggravating!
 
But before you think I'm a complete idiot for using him, our Ped gi is 3 hours away as well as Ped so I use local GP for blood draws to cut down on travel.:)
 
Clash said:
Yes he also wasn't sure why C needed D checked since he lives in the south. I explained the sunscreen and vitamin d process being afeected and cd'ers being prone to deficiency due to malabsorbtion and he told me to be careful with medical googling! Ughhh aggravating!
Click to expand...

I'd look for a new doctor. Good ones are hard to find. I thank my lucky stars I finally found a good primary care doctor that is open minded. It sounds like your doc is frozen in time and doesn't realize the world is in flux and new developments in treatment occur daily.

PS had vit d levels checked last week and awaiting results. 3 months ago I was at 42 after almost a year of d3 supplements and up from 31ng last summer. I've been getting a lot of CA sun last few months and can't wait for my results. I'll come back and post my progress.
 
Clash said:
But before you think I'm a complete idiot for using him, our Ped gi is 3 hours away as well as Ped so I use local GP for blood draws to cut down on travel.:)
Click to expand...

You aren't the idiot, your doctor is. He's stuck in a mental script where any patient that suggests something is playing doctor or self diagnosing on webMD. While this may be the case for some people, I think most of us are trying to figure out how to stay healthy. What's the difference of I read something online or ask my doctor about a drug I saw advertised on tv?
 
Yeah I know we call him the virus/cold doc because that is all he diagnoses. Lol He's a really nice guy he just mainly deals with colds and stuff. Like I said though, he just carries out the blood draws requested by the ped GI and Ped so we don't have to travel so no need to look else where for that. He usually has a more open mind though. He also is real quick to refer you to a specialist so that can work in the patients favor too I suppose.
 
DougUte said:
Wow, unbelievable. I wonder how some doctors stay in practice.
Click to expand...

Can't blame them, they aren't taught much about nutrition in school. Seems like some docs need to stop going by what was in their books years and years ago and start reading up on the current literature. Some of them are so out of date and its just hurting the innocent people who believe anything they say.
 
Dear David,
I am fairly new to the forum. Does anyone here know about aloe vera juice? Organic, inner gel only? Has anyone used it with success. Because I did for 5 months and went off it and am now having trouble again. Any help on this subject would be appreciated. Teresa (723crossroads)
 

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