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Probiotics - Please help

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Crohn's Disease
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Posted 3/8/2010 3:14 PM (GMT 0)
Hi
I am newly diagnosed and starting to make some changes including meds, diet and supplements. I want to include Probiotics but the more I read the more I get confused. I do not want to be a medical expert, I just want someone to say "go buy this and you will help yourself". (I have searched this site and remain as confused.)
From what I am reading it seems like the best answer is to make a 24 hour yogurt with the "right" starter. It seems like this starter should contain L. Acidopholis (from SCD) and Poly Saccharidde (PSA), potentially Lactobabillus but not Bifidus (due to SIBO) or LGG (works only for UC). I have not seen a starter that is Crohn's specific and would contain the above.
I would take a supplement if I knew what to take.
If anyone can please point me in the right direction I would really appreciate it
Thank you
David
Posted 3/8/2010 4:43 PM (GMT 0)
David - There are many many different kinds of probiotics on the market, as am sure you have figured out by now. I'd say, that if anyone tells you which probiotic is exactly right for Crohn's, then they must know more than doctor's and scientists because as it stands now that is really anyone's guess.  Different probiotics contain all different strains of healthy bacteria and probiotics are still being researched thus the answer alludes all of us at this time.  I have had my daughter taking probiotics for over a year now and I still cannot definitely say which one, if any, helped her.  I can tell you that the most natural, abundant probiotics do seem to come in the form of yogurt (the homemade kind, made with either a yogurt starter or a starter batch of yogurt) or kefirs (fermented foods.)  If neither of those appeal to you, or you're not interested in making yogurt or kefir, than go with an over the counter probiotic supplement.  A good one to try would be VSL#3, but it is pricey.  Right now, I have my daughter on Align and I don't notice any more or less symptoms with it (nor did I with VSL#3), but some people claim to see improvement with probiotics.  The best thing you can do is just try...one at a time so you can look for results.

A question for you... I see that you are taking a lot of D. D3 I presume?  Have you seen results with that?  I think the latest articles I have been reading regarding D3 and Crohn's are very encouraging.  My daughter's been taking 6MP for about 5 weeks now.  As of about 1 week ago, she seems to have hit an instant, almost overnight remission, but I understand that it takes about 2-3 months for 6MP to work. So now I'm not sure...is it the 6MP, or the increased in D3 that is helping her. It's all very confusing, right down to the probiotics!

Posted 3/8/2010 5:06 PM (GMT 0)
First thanks for the response. Unfortunately it seems we are reading the same things. My only comment is that VSL #3 is not legal for SCD so I am not going that route. I am going to make yogurt, with what I can figure out is the best starter and may compliment with supplements. BTW, if anyone can recommend a 24 hour yogurt maker that has glass not plastic containers and is easy to use, that would be appreciated.

Re Vit D
Yes it is D3. Prior to CD diagnosis I had a general physical. All the blood work was good except Vit D. I ride a bicycle outdoors a lot so this was weird. The Doc put me on this vit D for 3 months hoping my levels would increase. The fact my vit D was so low was seen as another indicator of CD by the GI Doc.
I have seen a lot about vit D and CD also, so I am going to monitor and continue.
I think it is helping but I have been so up and down over the last few months (some I know caused by all the testing) that I am not sure where I am at. Like your answer, I wish I could be more specific and helpful, David
Posted 3/8/2010 5:34 PM (GMT 0)
Hi David! Re: yogurt makers... If you will be making yogurt just for yourself, try the Yogourmet maker. It comes with a plastic insert, but you can order the glass jars separately. I bought mine through Lucyskitchenshop.com, and purchased a couple of extra jars. I also buy my starter (freeze dried) from them by the case because it's cheaper that way.

The only draw-back of this yogurt maker is that it tends to run a little too warm. You can monitor this and leave the outer lid off, which usually will take care of the problem. Also recommended is to buy a dimmer switch on a cord at your local hardware store. This will allow you to better control the temperature at which your yogurt cooks.

If you have a family and all members will be eating the yogurt (this happened in our case), you might just want to purchase the food dehydrator on the Lucy's Kitchen shop site. This allows you to make several jars of yogurt at one time. I now make my yogurt this way, and I only have to make it once a week rather than every other day. Obviously, it can also be used as a food dehydrator! smilewinkgrin

Honest, I don't work for them, but if you're into one-stop-shopping, Lucy's Kitchen Shop also carries a brand of probiotics which I would presume are 100% SCD "legal". They are VERY friendly on the phone and I'm sure will be happy to give you all the details.
Posted 3/8/2010 9:45 PM (GMT 0)
I've never had much luck with probiotics. I get more help from a daily breakfast of yogurt. For almost two years, I've been eating Wallaby Lowfat Vanilla yogurt and it helps tremendously (I was able to go off Crohn's medication for 1.5 years). But all good things do come to an end, however, and now I'm on Humira - which also works much better with the yogurt.

It has always been ironic to me that it works so well because I dislike yogurt intensely - I tried Wallaby at the suggestion of a friend because the texture is much different than "mass" supermarket yogurts. I can get by with using FloraQ2 for a few days if I'm out of town and don't want to drag the yogurt around with me.

Note: I don't work for Wallaby - I just eat their yogurt. I can't say if their other flavors or fat content yogurts will work as well - I barely like the vanilla. Other people seem to like it though: a couple of my Crohn's-free doctors eat it too.

Good luck, David.
Posted 3/9/2010 2:07 AM (GMT 0)
Yogurt never seemed to help me much at all. I have some intolerance to milk products not sure if it is lactose or what exactly. I have found a lot of help with VSL#3 double strength via prescription, Like others said, it is pricey. But, if you find something that works, it's worth the price in my opinion. Other probiotics didn't work as well for me. I think the other one that worked fairly well were the Pearls acidophilus. I do not have a definitive diagnosis of crohn's but my blood test is positive and I have inflammation in my lower colon. Good luck finding a probiotic that works for you. You can order the single strength VSL #3 online. Just google it.
Posted 3/9/2010 3:41 AM (GMT 0)
my 2 cents on this topic. I agree the more you read the more confused. that is, in my opinion, is there is no magic pill (or yogurt). everyone's body is different. if it was that easy, it would have been done and none of us would be on this site helping each other. That said, my GI put me on some when i was at my worse. I took them for about 1 month. (cannt remember the brand-they were samples he gave me) i did not notice any difference. but in the end found out it would not have helped as i had strictures (3 in a row) casued by scaring over many yrs of inflamation. SO, try them or the yogurt. it does not hurt. I hope you are working with a good GI who is monitoring your situation and can help track improvements or deteiorations quickly for you.
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