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MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 2/16/2010 1:20 PM (GMT -7)   
Love my Daughter's GI Doc. Today he was talking about all the information becoming more and more available about vitamin D3. As part of her bloodwork, he is checking her Vit D level. Anyone have this done? He said that alot of Crohnie's are found to be deficient. We are already supplementing, altho not daily, so this will be interesting. I always get happy when I think there is something "non pharm" that may be able to help her.

  • Nanners
    Elite Member


    Date Joined Apr 2005
    Total Posts : 14995
       Posted 2/16/2010 1:28 PM (GMT -7)   
    I had the test and I am currently in remission AND I live in Southern California and I was still found to be low. Even healthy people are being found to be low on Vit D3 because we are working in offices all day and using sunscreen more so we are not getting enough from the natural sun.
    Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
    Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
    *Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

    sr5599
    Veteran Member


    Date Joined Aug 2007
    Total Posts : 1202
       Posted 2/16/2010 3:17 PM (GMT -7)   
    I've had my D levels checked due to osteoporosis. It's very frequently low, low, low. I've taken calcatriol (50,000 units - Rx) a couple times to bring it up to a normal value. Now I take 2000 units each day. I don't notice any changes in my Crohn's though - meaning my flare is not better with proper amounts of D. Still got to have it for those bones!
    1 fistula, crohn's colitis, limited to large intestine
    Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


    vixen
    Veteran Member


    Date Joined Jan 2010
    Total Posts : 794
       Posted 2/16/2010 3:24 PM (GMT -7)   
    Funny you should ask that! Went to pick up son's repeat prescriptions this afternoon and there was another one on the pile-Calcichew-D3 Forte-I do not recall consultant saying anything about adding that but there it was! Asked pharmacist about it and she seemed to think it was given to minimise some of the side effects of the entecort.

    njmom
    Veteran Member


    Date Joined Apr 2006
    Total Posts : 1884
       Posted 2/16/2010 7:05 PM (GMT -7)   
    Yes, it's nice to see a doc take an interest and check vitamin D. Should be standard procedure for all gastroenterologists, especially those dealing with Crohn's.   
    Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 


    mom on a mission
    New Member


    Date Joined Feb 2010
    Total Posts : 1
       Posted 2/17/2010 9:33 AM (GMT -7)   
    njmom said...
    Yes, it's nice to see a doc take an interest and check vitamin D. Should be standard procedure for all gastroenterologists, especially those dealing with Crohn's.


    I saw your daughter's info posted below your comments. I am interested the experience you had in getting her diagnosed with Crohn's and what she is doing now to stay well. My twelve year old daughter had an infection about a year ago in January. They determined that she had campylobacter. She was given antibiotics and her stomach continued to hurt. We had one GI doc and finally switched to another after several months. They did both did lots and testing(scans,upper and lower gi's, colonoscopies) and she has had lots of blood testing too. They could not figure out what was wrong. The last GI doc sent us to a general pedi surgeon and he determined that her gall bladder was not working. We had it removed. Somewhat better, but she still had some stomach pain and nausea. We found a doc in Alabama. He gets outside the box. He gave her a specific antibiotic to target certain bad bacteria in the gut and told us to do the Paleo diet (similar to SCD). We have been doing that since December as well as killing candida, but her stomach is still sensitive to certain herbs and spices(cilantro and paprika) and to very tough meats. She finally has energy and her weight has stabilized. We know her adrenals are low, but have come up and she has low Vitamin D and bone density. We supplement with Vitamin and calcium/mag,enzymes and probiotics. No diagnosis to this point. I am wondering if you could give me info on your experience and healing process.

    Former58D
    Regular Member


    Date Joined May 2009
    Total Posts : 173
       Posted 2/17/2010 10:33 AM (GMT -7)   
    mom on a mission - interesting about the Paleo diet. I'm a huge fan of this. Have you seen success? Where in Alabama - it's my home state.
    "What can't be changed must be endured" - unknown

    DX with distal Crohn's colitis Oct 2007, predominantly in rectum
    Colozal (750mg): 3 pills 3xdaily
    Cortifoam - 1 nightly
    6MP - currently at 100mg and waiting for response......


    AzJohnny
    Regular Member


    Date Joined Sep 2006
    Total Posts : 171
       Posted 2/17/2010 5:21 PM (GMT -7)   
    My GP tests my blood for many things once or twice a yr. He told me to start taking vit D but it gave me horrible migraine headaches. A short time later there was a long thread on this forum about vit D3 so I tried that. I'm up to 2000IU daily and no sign of a problem. Gotta love this forum.
    AzJohnny


    I feel a whole lot more the way I do now than I did a little while ago.
    Crohn's Dx April 2006. Pentasa and Entocort EC


    EMom
    Veteran Member


    Date Joined Aug 2007
    Total Posts : 990
       Posted 2/17/2010 7:50 PM (GMT -7)   
    AZJohnny, I can't believe your doctor didn't specify which D to take!!! shakehead There are 5 or 6 that I'm aware of...

    P.S., I LOVE your quote--"I feel a whole lot more the way I do now than I did a little while ago." Made me laugh out loud!

    (I wish we had a rofl emoticon! Mods, any chance we could get one? We could use a way to express laughter here! smilewinkgrin Sniper's always cracking me up!)

    MoobyDoo, glad to hear your doctor is on top of this!!! Hope it helps!
    Mom to 17 year old son diagnosed in June, 2007.
    Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
    Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.
    http://www.healingwell.com/community/default.aspx?f=17&m=984588
    http://www.healingwell.com/community/default.aspx?f=17&m=1533705
    http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1262312


    MoobyDoo
    Regular Member


    Date Joined Sep 2009
    Total Posts : 212
       Posted 2/17/2010 8:36 PM (GMT -7)   
    THanks EMom. Nice to hear from you again. Hope your son is still doing great.


  • MoobyDoo
    Regular Member


    Date Joined Sep 2009
    Total Posts : 212
       Posted 2/17/2010 8:54 PM (GMT -7)   
    The Vitamin D articles seem to be pouring onto the internet these days. Read this one, about a possible treatment for Crohn's! Very encouraging news! http://trusted.md/blog/wpho/2010/02/05/vitamin_d_deficiency_may_lead_to_crohns_disease

  • Nanners
    Elite Member


    Date Joined Apr 2005
    Total Posts : 14995
       Posted 2/18/2010 7:51 AM (GMT -7)   
    Here is another interesting link about how Vitamin D3 helps with chronic pain. It has helped my fibro symptoms immensley.

    http://pain-topics.org/clinical_concepts/vitamind.php


    Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
    Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
    *Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

    Catasmom
    Regular Member


    Date Joined Sep 2009
    Total Posts : 54
       Posted 2/18/2010 8:17 AM (GMT -7)   
    We live in Maimi, but Cata's always inside, she loves the theater
    I'll check the D in her next lab work. Thanks!!!
     
    Mom of a 12 year old girl diagnosed on Oct. 2007.

    did 6 weeks of Total enteral nutrition with Splash E028 and Vital Jr. (also tied Peptamen) (1900 cal. a day)
    Put on 17 lbs in 11 weeks!!!!!!!
    Eating normally for over 2 months... supplementing with 3 boxes of E028 Splash.
    Symptom free!
    Also on Prednisone (10 mg every other day)/Asacol/6-mp/Vitamins (Centrum Kids)/Calcium (Oscal)/Probiotics: VSL#3/ Omega 3: Coromega/

    Warm healing wishes from the Miami beaches....


    jeanneac
    Veteran Member


    Date Joined Feb 2009
    Total Posts : 1812
       Posted 2/18/2010 9:14 AM (GMT -7)   
    It seems to be the buzz word anymore. They checked mine and it was a little low. I drink 3-4 glasses of soy mild a day too. They gave me a script for it and it is 50,000 units! You only take it like once a week or something. I hope it is time released. It scares me a little bit to take that much at one time but it looks like others here take it like that. It sounds like it could be helpful. I just don't want it to upset my stomach! lol...
    diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
    localized scleroderma, IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
    low thyroid,claritin, advair, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal
    zoloft, rolaids, pepsid (as needed)

    ALLERGIC TO SULFA, AND ANTIBIOTICS GIVE ME DIARRHEA!
    Blood test positive for Crohn's via prometheus ibd serology panel


    njmom
    Veteran Member


    Date Joined Apr 2006
    Total Posts : 1884
       Posted 2/18/2010 3:55 PM (GMT -7)   
    mom on a mission - looks like you and your daughter have been through a lot, but it's good to see she is doing better. My daughter is not doing the full SCD diet (she cheats by eating rice and potatoes) - right now she has no symptoms, but the only way we can really tell she is in full remission is for her to have a colonoscopy done. 
     
    Dr. Leo Galland, based in NY, has a degree from Harvard and specializes in integrated medicine. He doesn't accept insurance and is very expensive for the first visit...maybe your out of network insurance can help? He was the first doc to test her vitamin D.
     
    He is writing my daughter's LDN prescriptions. He has written several books I recommend highly and claims to have claimed a Crohn's patient via a yeast-free diet. Also, he is the only physician I know of that has done an SCD clinical trial.
     
    The books are "Superimmunity for Kids" and "Power Healing." 
    Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 


    vixen
    Veteran Member


    Date Joined Jan 2010
    Total Posts : 794
       Posted 2/20/2010 2:41 AM (GMT -7)   

     

    I have just got around to looking up info on Vitamin D which son now been put on and 2 bits of info  jump out at me-

    1. It boosts the immune system-surely that defeats the object of drugs that are being taken to suppress  the immune system!

    2. Do not use if you have a condition that makes it hard for your body to absorb nutrients- Doesn't Crohn's do this?

    It seems bizzare to be put on D3 after reading that! 

    Any thoughts?


    Former58D
    Regular Member


    Date Joined May 2009
    Total Posts : 173
       Posted 2/20/2010 7:04 AM (GMT -7)   
    Vitamin D may "boost" the immune system, but I wouldn't worry about it canceling out the effects of whatever drugs your son is on. The way I interpret it is that Vit. D helps regulate the immune system and in Crohn's our immune system is obviously dysregulated. In my opinion Vit D may help in the long run by helping to activate the genes which may get the immune system back to some state of normalcy. As to the malabsorption part, I wouldn't worry about that either. If you aren't absorbing it, you can't build up a toxic level, as may happen with the fat soluble vitamins.
    "What can't be changed must be endured" - unknown

    DX with distal Crohn's colitis Oct 2007, predominantly in rectum
    Colozal (750mg): 3 pills 3xdaily
    Cortifoam - 1 nightly
    6MP - currently at 100mg and waiting for response......


    vixen
    Veteran Member


    Date Joined Jan 2010
    Total Posts : 794
       Posted 2/20/2010 7:55 AM (GMT -7)   
    Thank you Former 58D it is good to get another perspective. I read too much :) but it did ring alarm bells as I go to see consultant armed with pen and paper to write down what he tells me regarding medication and as indicated earlier on this thread I do not recall anything mentioned about adding D3 to the tablet pile which left me wondering if the GP prescribed it off his own back to minimise the effects of the entecort (as indicated by the pharmacist) and without the consultants say so.

    njmom
    Veteran Member


    Date Joined Apr 2006
    Total Posts : 1884
       Posted 2/20/2010 6:30 PM (GMT -7)   
    Some of the standard guidelines for supplementation per the Crohn's and Colitis Foundation of America are below:
     
     

    Should supplemental vitamins be taken? If so, which ones?

    ...vitamin B-12 is absorbed in the lower ileum. That means that people who have ileitis (Crohn's disease that affects the ileum) or those who have undergone small bowel surgery may have a vitamin B-12 deficiency because they are unable to absorb enough of this vitamin from their diet or from oral supplements. To correct this deficiency (which can be determined by measuring the amount of this vitamin in the blood), a monthly intramuscular injection of vitamin B-12 may be required. Folic acid (another B vitamin) deficiency is also quite common in patients who are on the drug sulfasalazine. They should take a folate tablet, 1 mg daily, as a supplement. For most people with chronic IBD, it is worthwhile to take a multivitamin preparation regularly. If you suffer from maldigestion or have undergone intestinal surgery, other vitamins-particularly vitamin D-may be required. Affecting as many as 68 percent of people, vitamin D deficiency is one of the most common nutritional deficiencies seen in association with Crohn's disease. Vitamin D is essential for good bone formation and for the metabolism of calcium. Supplementation of this vitamin should be in the range of 800 I.U./day, especially in the non-sunny areas of the country, and particularly for those with active disease. Together with vitamins A, E, and K, vitamin D is a fat-soluble vitamin; these tend to be less easily absorbed than water-soluble vitamins. Consequently, they may be absorbed better in liquid rather than pill form.

    Are any special minerals recommended?

    ...iron deficiency is fairly common in people with ulcerative colitis and Crohn's colitis and less common in those with small intestine disease. It results from blood loss following inflammation and ulceration of the colon. Blood iron levels are easily measured, and if a deficiency is found (otherwise known as anemia), oral iron tablets or liquid may be given. The usual dose is between 8 to 27 mg, taken one to three times a day-depending on the extent of the deficiency and the patient's tolerance. Oral iron turns the stool black, which can be mistaken for intestinal bleeding. Other mineral deficiencies include potassium and magnesium. People may develop potassium deficiencies with diarrhea or vomiting, or as a result of prednisone therapy. Potassium supplements are available in tablet and other forms. Oral supplements of magnesium oxide may prove necessary for people who have magnesium deficiency caused by chronic diarrhea or extensive small intestinal disease, or those who have had substantial lengths of intestine removed through surgery...


    vixen
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    Date Joined Jan 2010
    Total Posts : 794
       Posted 2/21/2010 2:20 AM (GMT -7)   
    Thank you!
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