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Many probiotics contain gluten

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Ulcerative Colitis
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Posted 5/20/2015 8:07 PM (GMT 0)
"The authors of the study found gluten in probiotic supplements that carried “gluten-free” claims on their labels, and they discovered that the most expensive supplements were just as likely to contain gluten as the cheapest products."

well.blogs.nytimes.com/2015/05/19/many-probiotics-taken-for-celiac-disease-contain-gluten/?hpw&rref=health&action=click&pgtype=Homepage&module=well-region®ion=bottom-well&WT.nav=bottom-well

buyer beware. labels are essentially meaningless in the OTC supplements marketplace.
Posted 5/23/2015 2:00 AM (GMT 0)
soooo, what's next for us gluten sensitive probiotic takers ?

wait for the guilty party's to fess up ? find a sacrificial celiac sufferer willing to try a few of the favorites used by us uc folks ?

or do I ditch the probes for a bit and see whether heaven or hell arrives ?
Posted 5/23/2015 8:38 AM (GMT 0)
And Doors12 commented a while back that he suspects gluten is in some of our generic Rx meds-- even worse than OTC issues if that's so. / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/23/2015 1:36 PM (GMT 0)
One of the commenters on the NYT website pointed out that many of the bacteria used in the probiotic products are grown on barley straw, which would account for the presence of gluten.

I have no idea what to suggest except to stop taking probiotics if you are sensitive to gluten.
Posted 5/23/2015 2:18 PM (GMT 0)
I am sensitive to gluten and probiotics are a key component for maintaining my remission.

I find that certain brands or strains of probiotics are incompatible with me but not all probiotics contain gluten or cause problems. IMO it's worth the effort to find a strain that works for you personally.

I'll say this once again, but along with powdered psyllium seed this particular strain of probiotics, Lactobacillus Reuteri (NCIMB 30242), is a wonder drug for me.
Posted 5/23/2015 4:59 PM (GMT 0)
You know what else sucks, Humira has 4.8 mg mannitol and my dietitian put me on a diet in which I'm to avoid sugar alcohols, knowing I'm on Humira, I wonder if getting mannitol via Humira is the same as eating foods/gum with mannitol in it? And what would the purpose of putting mannitol in Humira even be?
Posted 5/23/2015 5:10 PM (GMT 0)
kazbern, Thanks for posting this information, it is very worrying to me.

I have four different brands of Probotics in the fridge, all four bottles are open and I have just been grabbing 2 pills randomly every night, and so one of these could be a problem, or maybe more. It's funny because about a week ago I felt quite ill, as if I had been gluttoned, and it actually crossed my mind if it was a supplement that I had taken, as I am very careful with food nowadays as any slip up with Gluten hits me hard.

I am currently in the process of closely monitoring everything I put in my mouth with a food diary, due to stomach bloating, multiple food allergies, and facial hives, and so I am quite happy to test these four different probiotics, and let you guys know the results.

Rather than taking these probiotics before bed, which is what I usually do, I am going to take 2 in the morning instead, so I can closely monitor how I feel throughout the day. I will start in the morning with Hyperbiotics PRO-15

These are the four, all Dairy and supposedly Gluten free.

Hyperbiotics PRO-15
NOW probiotic-10, 25 Billion
Ultimate Flora Critical Care, 50 billion
Swansons Ultimate Probotic Formula
Posted 5/25/2015 2:00 AM (GMT 0)
Culturelle helps me but Align doesn't. But others here seem to prefer Align.
Posted 5/28/2015 5:32 PM (GMT 0)

IamCurious said...
I am sensitive to gluten and probiotics are a key component for maintaining my remission.

I find that certain brands or strains of probiotics are incompatible with me but not all probiotics contain gluten or cause problems. IMO it's worth the effort to find a strain that works for you personally.

I'll say this once again, but along with powdered psyllium seed this particular strain of probiotics, Lactobacillus Reuteri (NCIMB 30242), is a wonder drug for me.[/quote

Hi thank you Iamcurious.... Can you tell me what your allergic symptoms were to mesalamine ? Also I like your food diary idea. Can you tell me were to purchase psyllium seed mixed with vsl3ds , And also lactobacillus Reuteri nice 30242 . And the fish oil . I have cod liver oil liquid Norwegian any ideas on that . And are u ok with dairy ? I know it's how you feel and everyone is different .thank you👍

Posted 5/28/2015 6:54 PM (GMT 0)
Powdered psyllium seed and VSL#3 must be purchased separately. Here is a thread by Jayguitar who also extols psyllium seed. And another thread which discusses where to purchase it, etc. And you will also see that not everyone is compatible with psyllium.
www.healingwell.com/community/default.aspx?f=38&m=3349886
www.healingwell.com/community/default.aspx?f=38&m=2152224

VSL#3 is expensive but also one of the most powerful probiotics around. VSL#3DS (double-strength) contains 900,000 CFUs and must be purchased by prescription. The good news is that if you have good health coverage then insurance will help pay for the prescription version.

There are literally scores of threads discussing VSL#3 so you could use the search feature of this forum to research it. Again not everyone finds it compatible with their body chemistry.

Here is a thread discussing Lactobacillus Reuteri (NCIMB 30242) and where to purchase it.
www.healingwell.com/community/default.aspx?f=38&m=3381125

IMO omega-3s in fish oil are one of the most important supplements for everyone to take, not just IBDers. Besides UC it keeps my joints greased and helps people with depression. Vitamin D is another panacea that you can look up for IBD, cancer, heart disease, etc.

You need to make sure you have a quality oil that is not rancid and without contaminants such as mercury, etc. Your Norwegian cod liver oil sounds good. You can also get a subscription to ConsumerLab.com to get your supplements evaluated by an independent testing firm.

Gluten gives me symptoms of colitis coming on, dairy does not... but but but
besides UC I am also pre-diabetic. I measure my fasting blood first thing every morning. Eating dairy at night raises my fasting blood sugar. Gluten also raises it. A slice of pizza would give me UC symptoms because of the gluten but that would probably be tolerable once in a while. But I am deathly afraid of becoming diabetic and dairy raises my FGL to over 100 mg/dl and that scares me and keeps me honest.

I discovered my allergy to mesalamines about two days after taking it. I tried Colasol and immediately got worse. “Gee what a coincidence, I got the flu and pleurisy at the same time I started meds”. Ha ha.

Then after waiting a few weeks I started Colasol again and within a day or two experienced the same pleurisy and flu symptoms. Believe it or not I tried again for the 3rd time, this time with Asacol, with the same results.

Of course my GI did not understand and was pissed that I wouldn't take prescribed Colasol, or Asacol, and he later tried to prescribe pred. I am not sure if I just quit him or he fired me.
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