Probiotics Not Always gluten-free

[cyclinglady]

I found this article in today's news. Looks like many brands may contain traces of gluten!

[icelandgirl]

Well, that's not good. I'm wondering about mine now. It says gluten free...but I guess that doesn't mean anything?

[GF Lover]

This is disconcerting.  I had stopped my probiotics a couple weeks ago when I got a new brand to switch is up.  They seemed to disagree with me as had the one I replaced.  I think I'll take a break from them and see what happens (if anything) from this Research Study.  My Autoimmune system has been in overdrive since January.  This may be the cause or might not be.  I'll see how it goes.

 

Thanks for the article Cycling 

 

Colleen

[icelandgirl]

I'm going to stop mine too and see if I notice a difference. It feels weird though as I've been taking them since diagnosis and was convinced I had to take them to get better.

[ravenwoodglass]

I have never really trusted pills. When I feel I want a probiotic I go with yogurt or a fermented food like saurkraut. Cheaper and much more tasty. 

[Rhobhan]

I am dumping ALL my supplements, including the probiotic.

 

I had been using Country Life supplements due to the fact they claim to be not only gluten free, but "certified gluten free" on some of their supplements.

 

I called them today, and asked about the gluten free claims. After proclaiming they were a "completely gluten free facility," she read me a statement that said that their products fall below 10ppm in gluten content. Despite the fact that is below the government standard of 20 ppm, it means that the products can STILL have gluten. NOT gluten free in my book!

 

Stupid me, all thought if a product was marketed as "certified gluten free" by the Gluten Free Certification Organization, it had no gluten.

[kareng]

I am dumping ALL my supplements, including the probiotic.

 

I had been using Country Life supplements due to the fact they claim to be not only gluten free, but "certified gluten free" on some of their supplements.

 

I called them today, and asked about the gluten free claims. After proclaiming they were a "completely gluten free facility," she read me a statement that said that their products fall below 10ppm in gluten content. Despite the fact that is below the government standard of 20 ppm, it means that the products can STILL have gluten. NOT gluten free in my book!

 

Stupid me, all thought if a product was marketed as "certified gluten free" by the Gluten Free Certification Organization, it had no gluten.

The fact is, there is no way to test for 0 gluten. A test that says less than 10 ppm could very well have 0 or 1. 10 parts per million is so small. You will never find anything that can guarantee there is absolutely no gluten with current tests. Let me say it again - testing at less than 10 ppm does not mean there is any gluten in it.

[cyclinglady]

I would personally feel better with a certified gluten-free labels, but let's face it, any supplement can be dangerous for a variety of reasons. Consumer Reports tested many and researched adverse effects related to supplements (which are non-regulate by the FDA. They recommend using foods sources over supplements. Here is the 2012 investigative report:

Open Original Shared Link

What is a celiac to do when they are often vitamin and mineral deficient at the time of their diagnosis? Eat whole foods! Avoid processed junk! Even though I bake with gluten free flours that are certified, we use them sparingly. Why? Because cookies, cakes and bread are not good food choices! Love to eat them, but they should be just a treat!

We have had many members who have healed, had repeat Endoscopies proving healed villi, and are thriving. Those folks are careful to read labels from trusted manufacturers and often buy gluten-free certified products. We had recently had a member who thought (along with his doctor) that he had Refractory Celiac Disease after being gluten-free for years. Turns out that he was getting exposures to gluten. This from a very intelligent person! We must all be diligent about checking labels and remaining on guard!

[Terrilynn]

Has anyone found a list of the probiotics labeled gluten free that contain gluten?

[cyclinglady]

I have searched but have not found the list. Only the researchers at Columbia University Medical Center who published the study would know. . Publishing the list would set them up for a huge lawsuit, most likely.

[Gemini]

I must be the only person who takes supplements and probiotics without issue.  I have been taking probiotics for about 25 years, both pre and post diagnosis and never had a problem.  I also take supplements because I have to.  Many Celiac's will have ongoing slight deficiencies of vitamins and minerals and without supplementation, that won't improve.  Even when healed, our absorptive powers are not those of people without Celiac Disease so don't automatically panic and think all supplements are not safe. I am very sensitive also and have never felt even the slightest bit sick after taking the brands I use.  My recent bloodwork was perfect so I know I am not getting glutened on a regular basis.

 

Open Original Shared Link  These are fantastic.  How brilliant of someone to mix chocolate and calcium together in supplement form!  I am partial to the dark chocolate ones myself. With osteoporosis, I have to supplement calcium and this way is none too shabby.......

[icelandgirl]

I must be the only person who takes supplements and probiotics without issue.  I have been taking probiotics for about 25 years, both pre and post diagnosis and never had a problem.  I also take supplements because I have to.  Many Celiac's will have ongoing slight deficiencies of vitamins and minerals and without supplementation, that won't improve.  Even when healed, our absorptive powers are not those of people without Celiac Disease so don't automatically panic and think all supplements are not safe. I am very sensitive also and have never felt even the slightest bit sick after taking the brands I use.  My recent bloodwork was perfect so I know I am not getting glutened on a regular basis.

 

Open Original Shared Link  These are fantastic.  How brilliant of someone to mix chocolate and calcium together in supplement form!  I am partial to the dark chocolate ones myself. With osteoporosis, I have to supplement calcium and this way is none too shabby.......

Hi Gemini...would you be willing to share the brands you use, especially for probiotics. With your great blood work I would feel comfortable taking what you take. I will be getting mine done next month when I see my GI. I don't feel like I'm getting gluten...but I do continue to have some issues and reading the article certainly scared me. My D and ferritin are both low so I'd like to keep supplementing.

[Gemini]

Sure!  I will have to check some of the brands at home tonight as I use different suppliers for different supplements.  But the probiotics I have used for years are below. They have been around for a long, long time and I have never had anything but good luck with these.  I would not feel this good and have such good blood work if they contained amounts of gluten that make Celiac's sick.  They can be found in the refrigerated section of most health food stores.  All the allergen information is given in the link.

 

I would say to people that if you are not feeling "right" or feel you have been glutened, low level or not, then of course you need to look at supplements and everything else.  But if you take supplements and feel good, then don't panic and doubt what you are taking.  Of course, this only works for people with symptoms or for those with positive blood work at diagnosis that can be measured, when in doubt.  But supplementing for a Celiac is normal and sometimes required so finding a good, safe supplement is not that hard.

 

I do not supplement for iron/ferritin anymore but when I did, this is what I used.  Open Original Shared Link  Make sure you have the one which is gluten free! (pictured)  There are 2 liquid versions and one is not gluten free.  It is a liquid that needs to be refrigerated once open and it tastes pretty good. It can stain teeth, though, as it is a liquid iron supplement so either brush or rinse your mouth after use.......or use a straw to bypass the choppers!

 

Open Original Shared Link

 

 

[icelandgirl]

Thank you bart and Gemini! To me it's comforting to know celiac veterans use a product and feel good.

[Coolclimates]

this is very disturbing news. Although I don't take probiotics, I do take some supplements. Does anyone know the status of these? they say "gluten-free" but that probably means nothing:

 

Viactiv chews (for calcium)

Nature's Bounty Iron

Sundown Naturals Vitamin D3

[Gemini]

Hi icelandgirl!

 

Here is the brand I use for Vitamin D3:  Open Original Shared Link  I use a 5,000.00 IU per day dose because I live in the Northeast and do not get much sun on a day to day basis.  To be honest, I don't always remember to take them every single day but do supplement at least 4 days a week, without fail.  Also, except for the iron supplement I listed, which can be bought in most health food stores, all my supplements are bought through my doctor's office. They have an apothecary right in the building so it's easier and they source their supplements well to accomodate people with allergies.  I don't know if this makes a difference as opposed to going anywhere to buy supplements.  All I can say is I have never gotten ill from a supplement before, in 10 years gluten free.  You know I am a sensitive Celiac and careful about what goes in my mouth.  So....I hope this helps.  I know it can be a crapshoot for us but at some point, you have to find a brand that works and you can trust.  I'm one of those malnourished Celiac's, or used to be, so my GI tract was totally compromised at diagnosis.  But when you live where I do, and work full time in a windowless lab, you have to supplement with D3.  Those in southern, more sunny climes may not have to.

 

The other supplement company I trust implicitly is called Metagenics.  They are only sold through a doctor's office so you just can't go anywhere to purchase them.  One of the best vitamin companies out there and they were doing gluten/allergen free products long before it was fashonable to do so.  I think the company will give you supplier names if you ask them.  I use their magnesium and sometimes get their chewable calcium tablets because those nice chocolate ones can melt in summer heat.

 

Hope this helps and if you have any more questions, I am here! 

[Gemini]

this is very disturbing news. Although I don't take probiotics, I do take some supplements. Does anyone know the status of these? they say "gluten-free" but that probably means nothing:

 

Viactiv chews (for calcium)

Nature's Bounty Iron

Sundown Naturals Vitamin D3

I think you may have to call each company to get the allergen details from them.  Briefly looking at their websites, they do not give much information, other than some are labeled as wheat and gluten free.  But if you want more info, you'll have to call them.

 

If you are feeling well while taking these supplements, then you can safely assume they are fine, unless you are an asymptomatic Celiac. Do you have antibody levels checked, if you were diagnosed using this method?  That can help to see if you are eating safely.

[icelandgirl]

Thanks as always Gemini. I've been taking Florajen 3 as my probiotic for a while and have done well on it. My D is from Nature's Bounty and it says gluten free. I may change some things up based on your recommendations though.

[icelandgirl]

I just wanted to share that I heard back from the makers of florajen 3 and this is their statement:

The FDA states “gluten free” is less than 20ppm.

All Florajen probiotics test at less than 5ppm.

Florajen probiotics are “gluten free.”

Sincerely,

Judy Myhre

American Lifeline, Inc.

Makers of Florajen

Sounds good to me!

[Gemini]

I have heard from other Celiac's that Florajen probiotics are very good and very safe.  I would not change your brand, based on the e-mail and the fact that you are doing well on them.  This is another case of panic over an article that claims probiotics contain gluten, when many probably have less than 5-10 ppm or in that neighborhood. You have to buy good quality supplements and sometimes that does not come cheap. You get what you pay for.

 

As a sensitive Celiac and one who has been doing this for 10 years, you will never.......at least not now with testing as we know it today, be able to guarantee that anything processed contains zero gluten.  It doesn't have to be zero gluten, either, to be safe. For a company to test down to 5 ppm, and have their product pass that stringent level of testing, is pretty damn good. Based on what others have said after using them, I would trust this product.

[icelandgirl]

Totally agree Gemini!

[Coolclimates]

I think you may have to call each company to get the allergen details from them.  Briefly looking at their websites, they do not give much information, other than some are labeled as wheat and gluten free.  But if you want more info, you'll have to call them.

 

If you are feeling well while taking these supplements, then you can safely assume they are fine, unless you are an asymptomatic Celiac. Do you have antibody levels checked, if you were diagnosed using this method?  That can help to see if you are eating safely.

I posted on their FB pages with these questions and they said that the products that were labeled "gluten-free" were truly gluten-free. I'm just concerned about cross contamination. I do not tend to get a lot of symptoms unless I'm really glutened bad. My antibodies are still slightly elevated and I was diagnosed with Celiac Disease 5 years ago.