I'm never going to get this right!

Coach Polly · Post by **Coach Polly** » Mon Apr 04, 2011 8:11 pm

So I've been taking VSL#3 as prescribed by my doctor. I read the ingredients (prior to my sensitivity results) and didn't see anything that I already knew I needed to avoid. Well, today I wanted to see if I can take it any time of the day because I forgot it this morning so I went on their website. Come to find out the "natural flavors" in the ingredient list include lemon and I tested positive for lemons. The other flavor that is available does not have natural flavoring but does contain cornstarch and I tested positive for corn. IT'S ALWAYS SOMETHING! I swear I'm just about ready to give up and go eat some pizza and wings!

Does anyone have suggestions on a probiotic I might can use?

sarkin · Post by **sarkin** » Mon Apr 04, 2011 8:26 pm

Oh, Polly, what a bummer.

I love probiotics and have used several, including Megaflora (from Mega Food). I see online that it's GF/DF/SF, but it has Vitamin C. Not sure of the source (but would be happy to write to them).

I just started taking my (other) probiotic again, now that I'm feeling a little better. Some research is called for before breakfast. One probiotic I used to love is from New Chapter, but it contains fermented soy.

Why do they have to add flavorings to everything? If I'm going to drink a powder mixed in food or liquid, I can work out the flavorings on my own. Or - dare I say it - just consume it without changing the taste...

Sara

Coach Polly · Post by **Coach Polly** » Mon Apr 04, 2011 8:39 pm

Tell me about it Sara! I'm already used to eating the equivalent of styrofoam so who needs flavoring at this point!

Post by **tex** » Mon Apr 04, 2011 8:59 pm

Coach Polly,

It's worse than that. The flavored versions used to contain gluten. (I have no idea whether or not they still do).

From the Fooddoc's blog, (Dr. Lewey is one of the most informed GI docs in this country):

The flavored form of VSL#3 powder contains maltose that according to the manufacturer, is derived from barley. Though they report the maltose is highly processed to the point they believe no gluten residues remain they cannot insure it is gluten-free.

That was written 2 or 3 years ago, so things might have changed since then, but I would look for an unflavored version, and verify that the label does not list maltose. If no version is available OTC without maltose, you should be able to get a prescription for VSL #3DS, which should be GF.

http://thefooddoc.blogspot.com/2008/01/ ... -only.html

Tex

Coach Polly · Post by **Coach Polly** » Mon Apr 04, 2011 9:50 pm

Tex,

AAAAAAAAAAGH!!! I am literally crying. I can promise you if I were going to take a big bait of gluten every morning it would NOT be in the form of powder mixed in some cold water

I don't know which way to turn now. I can't find an ingredient list for VSL3ds powder anywhere but I'm sure the the unflavored version is still going to have cornstarch in it. The capsule form of the regular VSL3 has the following inactive ingredient list: microcrystalline cellulose, stearic acid, magnesium stearate, vegetable capsule (hydroxypropyl methycellulose), and silicon dioxide. What the crap?

I read the docblog you included--thanks! After reading that I really feel like I need a probiotic but I'm just so stinking confused.

Post by **tex** » Tue Apr 05, 2011 8:19 am

I hear you. Despite the ominous-sounding names, though, none of those ingredients that you listed for the capsule version, should be a problem. The first one is simply purified wood pulp, for example, and the last one you probably recognize as plain old sand. So that one might be safe to use. Those ingredients don't sound very appetizing, but then, they're supposed to be inert, so that's probably why they were selected.

Interestingly, Dr. Fine also recommends that we should be taking a good probiotic. Unfortunately, the last time I checked, he still hadn't found one that met with his approval, so as far as I know, he still can't make any specific recommendations.

A few members have found that certain probiotics seem to help them, but many/most of us haven't had much luck finding one that seems to be beneficial, in the long run. Some of us have even had somewhat severe reactions to them.

VSL#3 is known for having a much higher probiotic population content than most products, which, theoretically at least, should be an advantage.

Polly · Post by **Polly** » Tue Apr 05, 2011 8:29 am

Hi Coach Polly,

I never found a probiotic that sat well with me, and I tried quite a few. Probably because I have so many sensitivities and because I am extremely sensitive to the teeniest bit of an offender. So I take none and am doing fine. I found that to go into remission I needed to eat nothing but pure food. No herbs, supplemements, probiotics, etc.

I agree - it is soooo frustrating to encounter constant landmines in things that are supposed to help us. Sigh.

Hugs from the other Polly

irisheyes13 · Post by **irisheyes13** » Tue Apr 05, 2011 9:15 am

I too have bought two different types of probiotics and they are in my fridge waiting for me to get brave enough to take them. I've tried but don't know if they are doing more harm than good.

Tex- I spoke with Kathy at Enterolab about two months ago and specifically asked her about a probiotic and whether they (Dr. Fine) had one that they recommend. Her response to me was that HE takes Culturelle but that they don't promote any one particular brand or make recommendations for a specific probiotic.

Post by **tex** » Tue Apr 05, 2011 10:51 am

Kelly wrote:Tex- I spoke with Kathy at Enterolab about two months ago and specifically asked her about a probiotic and whether they (Dr. Fine) had one that they recommend. Her response to me was that HE takes Culturelle but that they don't promote any one particular brand or make recommendations for a specific probiotic.

Thanks for the update. Apparently Dr. Fine realizes that, like treatment methods for MC, a probiotic has to be an individualized selection, because there is no one-size-fits-all solution, unfortunately.

Thanks,
Tex

sarkin · Post by **sarkin** » Tue Apr 05, 2011 10:57 am

Even with the frustrations, the reminder that YMMV is still helpful... and the fact that someone somewhere has found a workable solution is hopeful.

I wonder whether the bacteria in kombucha would be good (and whether the yeast would be bad)... for any of us. I'm sure that very little can be good for all of us!

Sara

Post by **tex** » Tue Apr 05, 2011 11:28 am

For a while, when I was healing, I ate a little sauerkraut each day, and didn't have any problems.

Tex

Mags · Post by **Mags** » Tue Apr 05, 2011 2:25 pm

Coach Polly--

IMHO, the less complicated you make it while you are trying to heal, the easier it is. The potential pitfalls in probiotics, it seems to me, far outway any benefits to you at this time. It seems, from the title of your post, that you are really stressed out right now, and as everyone here knows, that can be one of the worst things for you.

I may be wrong, and forgive me if I am, but in reading your posts, you seem to have had a wonderful life, where everything was in its place, and you had your routine down. MC is one of the biggest monkey wrenches that can get thrown at you, because it is like an earthquake that shifts the foundations of your house, and the ground underneath your feet is not solid anymore.

It's very scary, and you want to fix it immediately. You get lots of different opinions thrown at you at once, from your doctor, people you know, this board, and you try to take all of them into consideration. Meanwhile, the D won't stop, you are losing weight, and nothing seems to work. You feel like if you can just figure this thing out, everything will be okay...

It will. But first, take a deep breath, and concentrate on one thing at time. Get the D under control. Whether through diet, medication, or both, this is the first thing you need to do.

Go from there. As a wise person on this board has said, there is no right way or wrong way, there is only your way. Sometimes is just takes a while to figure out what that is.

Love,

Mags

sarkin · Post by **sarkin** » Tue Apr 05, 2011 2:32 pm

Mags,

What a grounding and kind and helpful post. (Polly, I hope that makes you feel as good as it did me.)

Tex, sauerkraut! As I live and breathe. My husband is going to backflip with joy when I mention my interest in adding this to the menu. Fermentation is a miracle and a mystery (and a bit of a dark art, and probably a risk... but nonetheless, a miracle and a mystery).

Sara

Post by **tex** » Tue Apr 05, 2011 2:54 pm

Sara,

Mag's post was superb. Getting the D under control, (by any means), is indeed the first priority - all the other details can be worked out later, when one feels more like fiddling with them. One day at a time is the way to approach the project.

I believe that most people with MC can tolerate sauerkraut, (at least in limited to reasonable quantities), except for those who have mast cell issues. All fermented, (or dried), foods can spell trouble for anyone with mast cell problems, though.

Tex

sarkin · Post by **sarkin** » Tue Apr 05, 2011 4:02 pm

Tex,

I'm submitting a request for my pathology records from my '97 biopsy - I'll bet they didn't look for mast cells. And even if they looked and might have found them, I could still have that issue now. Thanks for bringing it to my attention - it's on my list to ask my new doctor.

I'll take that up in a new thread - it's a month ago that I re-encountered CC. One day at a time is definitely working for me, so far!

Thanks,

Sara