the patient celiac

I am going to continue to take my probiotic

18 comments May 21, 2015

I did not intend to write a post this week, but after reading numerous articles, blog posts, and comments regarding a recent study from the Celiac Disease Center at Columbia University showing that some probiotic formulations contain traces of gluten, I felt compelled to write this...Please bear in mind that this research has not yet been published, so all of the information I have obtained regarding the study has been from press releases, such as this one. The research findings were presented at the DDW (Digestive and Disease Week) conference this past weekend in Washington D.C. but I do not personally know anyone who attended who I could converse with.

In a nutshell, Dr. Nazareth and her team at Columbia tested 22 of the best-selling probiotics for the presence of gluten. They found traces of gluten present in 12 of the 22 probiotics that were tested (55%). Although the gluten levels were less than 20 ppm in 18 of the 22 probiotics  (and therefore, considered to be gluten free by current FDA standards), 4 of the 22 probiotics had gluten levels were > 20 ppm (we do not know the exact levels as the research has yet to be published). Of even more concern was that 2 of the probiotics that contained an excess of gluten were labeled as being "gluten free."  This is a HUGE problem and a reminder that regulation of gluten-free labeling of medications and supplements is desperately needed. I hope that this research will help to pave the way toward regulation. Like many of you I have relied on product labels to determine which vitamins and supplements to purchase through the years, and I have trusted the accuracy of gluten free labels. It is disappointing but also eye opening, and I am interested to see the results of future testing for gluten in other supplements and medications as well.

What is also disturbing to me, though, are the numerous claims that I had seen posted all over the internet the last few days stating that probiotics are harmful and dangerous to all of us with celiac disease. One of the craziest articles that I came across is titled "Gluten-Free Probiotics are Deceitful and Dangerous." Many of you have emailed and messaged me on Facebook with your concerns, and I was sad to learn that many of you are scared that you have been both "poisoning" yourselves and your children by giving them probiotics, because you haven't!!!

Dr. Benjamin Lebwohl, an assistant professor at the Celiac Disease Center and a co-author of Dr. Nazareth's study, has been quoted as saying: "We know that most patients with celiac disease only develop intestinal damage when consuming more than 10 milligrams of gluten daily, and it is unlikely that contaminated probiotics can lead to that amount unless patients are ingesting mega-doses." As I posted earlier this week on my Facebook page, when I did calculations based on the probiotic that I take, Florajen 3, I found that in order the reach the 10 mg/day threshold that I would need to take more than 1000 probiotic capsules/day if there was 20 ppm of gluten in each capsule.  Even if I subtracted out the average 3-5 mg of gluten per day that all of us on GF diets inadvertently ingest, I would still need to ingest over 500 probiotic capsules per day to reach the 10 mg/day threshold--I based these calculations on my 460 mg capsules each containing a hypothetical 20 ppm of gluten, and I'd be more than happy to share the equations if you'd like.

I opted to start to take a probiotic, Florajen 3, back in 2013 as I learned more and more about the importance and the influence of the microbiome on overall health and immune system functioning.  I began to delve into all of the research articles on PubMed.gov postulating that there may be a link between having an overgrowth of harmful bacteria and the later development of allergies, autoimmune conditions, and inflammatory bowel disease. I also came across several studies showing that patients with celiac disease often have imbalances of their gut bacteria as well, both prior to and after diagnosis.

I have been very happy with my probiotic. Since starting it my digestion and IBS symptoms have significantly improved, my acne has virtually disappeared, and the additional food intolerances that I developed after going on the gluten-free diet have improved as well. It has also helped me in the management of mast cell activation disorder, a disease of the innate immune system which I developed after my celiac diagnosis.

I am a "super-sensitive" celiac when it comes to gluten cross-contamination--I get neurological symptoms--and I have never once developed symptoms that I can trace back to my probiotic. I contacted American Lifeline, the company that makes Florajen products, earlier today and I was assured that all of their products are gluten free (< 5ppm of gluten), that they test for the presence of gluten, and that none of their products contain wheat or gluten.  I feel comfortable continuing to take it.

I know that we all have differing experiences with celiac disease and that we all need to make the best choices for our own health and well-being. I just wanted to share why I am opting to continue to take probiotics, despite the current fear and controversy...

Thank you for reading and please bear in mind that I am tired and stressed right now as we prepare for our upcoming move with 4 kids to Boston. And that I might not get a chance to moderate and respond to your comments right away. So please be gentle with me :)

 

Disclaimer: This post is my personal opinion and is not intended to be used as medical advice. I encourage you to discuss your health problems, concerns, and questions with our own physician.  I also do not have any sort of financial stake or formal relationship with American Lifeline, the makers of Florajen 3. 

 

 

 

 

Comments
Jess
In reply to Donna.
Hi Donna,

I am so glad that you’ve found my page. I’ve had to put it on the back burner this summer as we’ve transited to our new life in Boston, but I plan on posting more often soon.

I did receive the most recent gluten testing for Florajen 3 via email and all samples tested out at < 5ppm, your comment reminded me that I need to post the test results on my FB page :)

I hope that you've had a great summer and are feeling well.

Jess
7/19/2016 7:23:23 PM
Jess
In reply to Andrea.
Hi Alexa,

Thank you so much for sharing your story. I am sorry that I did not reply until now (moving, settling in, and starting work gobbled up all of my free time this summer).

My neuropathy did resolve after about 3 to 4 months–we had to go from having a shared GF/non-GF kitchen to a totally GF house and I also stopped eating out of our home and most GF processed foods. Every time it’s returned, since early 2013, I’ve been able to link the neuropathy directly to cross-contamination and it resolves over the course of days to about 2 weeks. I had all other sources of neuropathy ruled out and it’s a classic small fiber neuropathy. I get brain fog really badly when my nerves are inflamed.

I sincerely hope that you’re feeling better than you were when you commented in June.

Jess
7/19/2016 7:22:18 PM
Jess
In reply to Ed.
Thanks for visiting my page Ed. Like your mom, we are pretty sure that my grandmother had undiagnosed celiac as well. I wish you well and look forward to “seeing” you on here from time to time (hopefully).
Jess
7/19/2016 7:21:55 PM
Ed
In reply to Jess.
I have been a Celiac for 22 years. Yes way before anything was marked Gluten Free. I have just started taking Probiotic’s at the age of 72. I have learned to do research here is one such example http://www.today.com/health/many-gluten-free-probiotics-actually-contain-gluten-t22171 . I developed celiac disease after eating a parasitic infected oyster that nearly killed me.
After years of research I have reached a conclusion that my mother died from celiac disease which was undiagnosed and her father had years of celiac symptoms that I am aware of. I believe I was predisposed to celiac disease and it took a shock to my digestive system to manifest itself. Keep up the good work, I enjoy your commentary.
7/19/2016 7:21:32 PM
Donna
Hi Jess,

I just was directed to your site yesterday. So glad I was. I had started using a new protein shake. I had used this before it is organic vegan with greens, but this one was with a probiotic in it. Well I drank one Monday and Tuesday. I was so sick Wednesday horrible migraine and fatigue. It was worse Thursday with long bathroom visits. I finally felt a little better and was flipping through Facebook. And saw a post suggesting your blog to someone. I went to your blog and I wondered. So I did not have another of those and got much better but it I looked up the Floragen3 and where I could purchase it but all said they would order so I went to my regular pharmacy They arrive tomorrow! So thank you again for this blog post! I guess this means I am a little more sensitive than I thought

Oh and on a side note. I traveled with my teens choir as a chaperone to Boston this past March. I was so nervous. We went to a nice family style Italian resteraunt and was worried (I’ll have to look up the name). There was a sweet menu for our group but the accommodated every course. Instead I’ve the fried mozzarella appetizer I had fresh mozzarella and tomstoes with balsamic vinegar., a special salad, grilled salmon and asparagus, and creame brûlée and fresh fruit for dessert. My table helped me eat lol. I have a gbp.so I don’t eat much.lol. Then Legal Seafood is wonderful. All there breading is gluten free. The chef camd out and reassured me on prep. It was fabulous to be able to have fried shrimp OUT. And there is a broth based clam chowder I liked better than regular. Very nice place! I did get glutened at the food court in Quincy Market one day. Thought I was being safe with a salad but added grilled chicken. It was a gyro place….must have had soy or something.

Thanks Again! Can’t wait to read more!

With much gratitude,,

Donna
7/19/2016 7:20:50 PM
Andrea
Hi Jess,

I’m new to your blog and just had a baby a year ago (new mom) — I stumbled upon your blog today and wanted to share my story – thanks so much for having this !!!
I started having nausea in mid Sept 2014 (4 months after giving birth) and i was diagnosed with H.Pivlori, took the triple pack antibiotic and felt marginally better but never 100%. My doctor put me on several different types of PPI’s (as none of them seemed to be working) after he completed an endoscopy and diagnosed me with mild gastritis (no bacteria and biopsy clean) in Nov, — but my discomfort continued – good and bad days but I never felt like myself again.
The past couple of months my symptoms peaked at their worse since April, and this past week i went to my primary for a scheduled primary checkup and she ordered a celiac blood test – and she called to tell me it was positive – after educating myself on celiac this week my symptoms are text book – brain fog, lightheaded, pit feeling in my stomach (nausea on & off), food wouldn’t digest right, my joints starting cracking two weeks ago and I have trouble concentrating and with my memory – mind you this has all happened in the past 9 months – i don’t have ANY prior medical conditions at all other than the annual occasional cold. This Monday I’m going to my gastro for biopsy of small intestine. I’m at my absolute lowest point, i have muscled my way thru going to work everyday and going on with my business, but i feel so weak now – i can’t even get out of bed. I started a probiotic 2 weeks ago as I figured it could only help for all the reasons you stated in the article. All i want is to feel like myself again – it feels like such a distant memory to when i was the bubbly, social, happy me. Hoping to better days ahead…..right now i can’t start my GF diet ’til biopsy is done – I cannot wait till Monday.

One question i did have from your story is your neuropathy constant or only triggered with cross contamination?

PS – hope you had a good move to Boston – btw, your picture with your girls is ADORABLE!

Thanks, Alexa
7/19/2016 7:19:21 PM
Sarah
In reply to Jess.
Thanks for the response and I apologize for my typos. I was writing on my phone and clearly wasn’t catching those. Thankfully I have the best husband who shares a completely GF home with me (I am peanut/tree nut free for his anaphylactic allergy). We live by Disney and enjoy their allergen safe dining. I moved here 6 months ago, so maybe I am a really sensitive celiac who was getting mildly glutened at riskier restaurants. I have seen varying research articles about the amount of time that antibodies take to clear, up to three years. It will be three years GF for me in Oct 2015 so hopefully my next results are better!
7/19/2016 7:18:24 PM
Tina
In reply to Jess.
Hi Jess~
Thanks for your thoughts and for sharing your experience with starting a probiotic. I would expect some GI adjustment to starting a probiotic, as was your experience. Since my symptoms went beyond that, to include headaches, agitation and some insomnia I was concerned….and thus stopped taking the products. Thanks for keeping an eye out for journal articles on probiotics and “die-off”.

Titanium dioxide in one of the products is the only filler that I’m not already taking somewhere else. It is a good thought to think of that in addition to the probiotic itself. I’m glad you mentioned the product you take. I will likely try one of their probiotics as it looks like the fillers are very few! :-)

I am trying DAOSin by Swanson and Histamine Block by Seeking Health for my HIT. They are DAO enzyme supplements. I am trying to determine if they help or not. I take them primarily with a meal that I am uncertain of the histamine content (eg fish or meat in a restaurant). Recently, I took 2 supplements with some chicken I had in a restaurant. It did not work. Now I am experimenting with upping that amount to 4 supplements per meal. We’ll see. I’ll be eating out again next week while traveling so I’ll know more after that trip.

I wish you a no hassle, easy adjustment move to Boston!! :-)
7/19/2016 7:13:59 PM
Jess
In reply to Tina.
Hi Tina,

It’s good to hear from you. I have heard others describe and talk about the “die-off” that you alluded to, but I have not come across any solid science to support it.
When I started my probiotic though, I did have about 48 hours of pretty severe GI distress and a lot of abdominal pain, which I did attribute to the “war” between the good and bad bacteria in my gut. After this 48 hour period my digestion normalized and within a week or 2 my IBS was totally gone.

I also wonder if perhaps your headaches were reactions to some sort of other ingredient/filler in the probiotics? Although it would seem strange to react to all 3 in the way that you did.

I will let you know if I come across any answer to your question about probiotics causing headaches. We may have talked abut this before, but are you on any other supplements for your HIT?

Jess
7/19/2016 7:12:26 PM
Jess
In reply to Sarah.
Hi Sarah,
That is great that your symptoms have improved. I think that the best way to get answer to your question would be to get a 2nd opinion at one of the major celiac centers, if that is something that would be feasible. I have read that it can take quite a while for the antibodies to normalize on the GF diet (up to a year or so) if they are sky high at the time of diagnosis, but it does seem strange that yours quickly dropped to the 20s and then plateaued. Do you share a household with gluten eaters? Medications and supplements can be sources of gluten as well, so your hunch might be correct. I hope you are able to find answers.
Jess
7/19/2016 7:02:33 PM
Jess
In reply to christine.
Thank you Christine! I am definitely looking forward to checking out new restaurants in Boston (my GF options in WI have been pretty slim).
Please let me know if you’re ever in Boston so we can meet up!
Jess
7/19/2016 7:02:17 PM
Jess
In reply to Irish Heart.
Thanks so much Irish Heart! After I respond to the comments on this post I hope to be done talking about probiotics for a while :) But I will continue to take them…
Looking forward to seeing you soon (hopefully).
Jess
7/19/2016 6:53:30 PM
Jess
In reply to Shannon.
Thanks so much Shannon. I really appreciate your support, as always! I am hoping and praying that this is our last move while we raise our family (after that we’ll head to a warmer climate!) Take care!
Jess
7/19/2016 6:51:11 PM
Tina
Thanks for your insights and especially for mentioning which probiotic you take. I don’t have celiac disease, but I have multiple food intolerances along with histamine intolerance. In the past, when trying various probiotics, then did not seem to work for me for one reason or another.

Recently I have tried 3 different brands. Brand “A” (one dose) caused me agitation such that I didn’t sleep after 4 a.m. for the next 2 nights. Brand “B” gave me a slight headache the day after the first dose. So, that day I took just 1/2 capsule and ended up with a substantial headache that lasted all the following day. Brand “C” (which I took just 1/4 of a capsule on 2 consecutive days) gave me agitation and headaches. I am in that place right now. :-(

I am wondering if I am not tolerating these probiotics due to histamine issues, or if this is some kind of “die-off” (if that is a real thing from taking probiotics) and I should just persevere through the reactions.

In your experience taking probiotics (since you have mast cell activation disorder and histamine issues) did you have problems starting your probiotic?

Thanks for any insights you can offer. I would love to reduce my food intolerances if possible!!!!
7/19/2016 6:50:28 PM
Sarah
Thanks for this informative post. Do you know how much gluten can increase antibodies vs cause intestinal damage? I had ttg antibodies in the 300 range when diagnosed but the first gastro didn’t do enough biopsies to find damage. I was diagnosed on the 5 part rest of rash, extremely elevated antibodies, response to the gf diet and reduction in anticodies, lacking finding intestinal damage. I feel amazing since going gf but my antibodies have stayed in the 20 range since going gf in 10/13 and very strict 6 months later. It’s frustrating because the gastro thinks that you are being not compliant to the diet. He advised changing personal care products, which I did. Articles about supplements worry me because I take them and am concerned now that it may be the root of my persistent antibodies. It’s important to me to normalize them. I have researched articles but haven’t found guidance and would appreciate anything you know!
7/19/2016 6:49:42 PM
Christine
Many thanks for your comments and sharing your wisdom with this. It is so very much appreciated.
Best of luck with your move to Boston…I hear it has a lot of good gluten free places!

Christine
7/19/2016 6:48:44 PM
Irish Heart
I take Florajen3 for the same reasons you do. I also have the same wonderful results and will continue to take them.. I abhor alarmist rhetoric (as you know) and until we know which proBs are over the limit, I can’t understand how anyone would stop doing something good for them without all the information. All I can think of is “chicken little”. You know I wish you all the best as you begin your new adventure, dear Jess!
xoxo G.
7/19/2016 6:48:18 PM
Shannon
Jess,
Thank you so much for writing this. It really needed to be said in light of everything twirling around about probiotics at the moment. I wish you the very best in your move to Boston. Hugs to you!
7/19/2016 6:48:00 PM
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