Gluten and/or Streptococcus in Probiotics

[mompaisley]

I have been looking for a good probiotic for my PANDAS girl. She's not great about swallowing pills (although she is learning). We ran out of the Garden of Life Primal Defense Ultra, and I was getting ready to order more, and I read the label. I was surprised to find that it contains barley grass, which may contain gluten! (and we are a gluten free family)! I can't believe that we have been taking this for years without knowing.

 

That got me reading more labels as I search for a gluten free probiotic. And many have some form of streptococcus in them! Is this a problem with PANDAS? Is it a different enough strain to not trigger the immune system? Has anyone studied this? I hate to think that giving her probiotics could make her worse - but I don't want to be paranoid, either. I will ask Dr. T on Friday when we have our first appointment with him. But has anyone dealt with this? Thanks.

[mdmom]

Dr. T is who told us to avoid Strep Thermophilus strain in probiotics. However, we have not found a potent enough probiotic without this strain. We use VSL#3 and it the strep in it doesn't seem to bother my son.

 

I'm sure others will have some input.

[landamom]

Our daughter was still having problems when we spoke to Dr. T, and one of the first things he asked was what kind of probiotics we used. Sure enough it had strep in it, and I really believe it was causing a problem for her. It was a 100 billion plus strain which I thought was great... Had no clue that there was strep in it. The ones she takes now has only 3 billion per chewable which I think is too low but the more strains, the higher the chance of strep being in there. Hopefully others wil reply with their suggestions because I'd also like to find a high dose probio without the strep in it! Best of luck!

[mompaisley]

I am emailing various probiotic makers to let them know about PANDAS and to suggest that they make a gluten free/strep free probiotic, preferably chewable - and asking them to learn about PANDAS and let their customers know about it via their website and catalogs. If more of us do this, we can encourage them to make a PANDAS specific product - and get the word out about PANDAS in the process.

[jimTheBassPlayer]

Yes, Dr T advises to avoid S. Thermophilus. Almost all yogurt and cheese have it.

 

You can make strep free yogurt without. Some of these starters have no strep.

 

https://www.culturesforhealth.com/choosing-a-yogurt-starter-culture

 

Mercola probx pills (Complete probx)have strep, but the powder packets do not, at 66 billion CFU.

 

http://shop.mercola.com/product/probiotic-powder-packs-30-per-box-1-box,57.htm

 

Strep free Kefir and Cultured veggies are a good option. The veggies have CFU counts in the trillions and are non-dairy.

 

Caroline Barringer's site has strep free starters for both.

 

http://www.immunitrition.com/products.php#Prods_pg_probs_and_starters

 

-Jim

[nicklemama]

Klaire Labs has Therabiotic Detoxification, which has 50+billion and three strains, no strep, no gluten. DS takes that. I ordered Organic 3's GutPRO and have been taking it myself. Its formulated for kids on the spectrum. I have the powdered form, which has about 7 strains, no strep, no gluten and you can use however many billion you want. I bought the measuring spoons for it.

[mompaisley]

Thank you, everyone, for the great information. I feel so overwhelmed. But grateful to have a place to go and people who understand! Excited for our appointment with Dr. T tomorrow!

[popcorn]

GUTpro has been formulated for kids with PANDAS (although they were on backorder when I tried to order earlier this week). http://organic3.com/gutpro/

 

In the meantime, I've ordered D-Lactate Free http://www.customprobiotics.com/custom-probiotics-d-lactate.htm It's expensive, but each teeny tiny spoonful contains 26 billion CFUs, so it ought to last us a long time. It contains no strep thermophilus.

[mom24]

Holy Cow. Dr B recommended VSL 3 powder packets and I had to dig a little, but I discovered that they DO have strep in them. I do remember Dr T telling us to stay away from yogurt and other things with strep in them. Thanks SOOOO much for posting.

 

Nickelmama-thanks for the alternative, I intend to order to ASAP.

[Guest Motherbear]

I was recently turned on to Florastor. Gluten Free, and you can take with antibiotics:

 

http://florastor.com/learn-about-probiotics/probiotic-difference/natural-ingredients#.UIIm0o5WI20

 

Only started it today, so I'm not sure how well it works, only heard from another Mom that it has worked well for her child.

[mlde]

May I ask who Dr. T is that's referenced here so that I may look them up?

Thank you,