Tag Archives: Celiac Disease and probiotics


I am going to continue to take my probiotic

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. 






Fall 2014 Celiac Disease Research Round-Up

I haven’t done a “journal club” type post for a while on here, and there have been some really interesting studies published in the last 4-6 weeks, so here goes…

1. “Altered Duodenal Microbiota Composition in Celiac Disease Patients Suffering from Persistent Symptoms on a Long-Term Gluten-Free Diet.” Authors: Wacklin, P., Laurikka, P., Lindfors, K., et al. Published online in the American Journal of Gastroenterology on Nov. 18, 2014.

Background: Many celiac patients continue to have symptoms while on a strict GF diet.

Objective: To see if there is a relationship between persistent digestive symptoms and abnormal intestinal microbiota (gut bacteria) in patients with treated celiac disease.

Methods: Researchers compared gut bacteria in 18 celiac patients with persistent symptoms and compared them to 18 celiac patients who had no symptoms. Both groups were on the GF diet, and all 36 had experienced a normalization of celiac antibodies and intestinal healing prior to the study.

Results: Celiac patients with persistent symptoms had less diverse bacteria in their small intestines as well as increased numbers of Proteobacteria species.

Conclusion: Some celiac patients may have persistent symptoms due to dysbiosis (an imbalance of gut bacteria).

My opinion: Further evidence that probiotics may someday be part of the medical “standard of care” for celiac disease. As some readers may already know, I am a huge fan of probiotics.

2. “Bone Mineral Density at Diagnosis of Celiac Disease and after 1 Year of Gluten-Free Diet.” Authors: Pantaleoni, S., Luchino, M, Adriani, A. et al. Published online in The Scientific World Journal on October 14, 2014.

Background: Celiac disease is associated with problems with low bone mineral density (osteopenia and osteoporosis).

Objective: To evaluate osteopenia and osteoporosis in patients with newly diagnosed celiac disease, and to see if bone mineral density changes after one year of being on the GF diet.

Methods: 169 subjects with celiac disease had their bone mineral density checked by DXA scan at diagnosis and then at the 1 year GF mark.

Results: The initial study population had 169 subjects. 42% of the subjects with celiac disease had normal bone mineral density at time of diagnosis and were excluded from further analysis. 76 subjects were retested at one year, and there was a significant improvement in bone mineral density average scores across the board.

Conclusion: Over half of newly diagnosed celiacs have low bone mineral density, especially if diagnosis is when > 30 years of age.  The authors conclude that DXA scans should be offered to those newly diagnosed with celiac disease.

My opinion: I did not have a DXA scan performed when I was diagnosed in 2010 because my medical insurance refused to cover it. Looking back, I probably should have fought harder for coverage, but at least this journal article made me feel better that, either way, my bone mineral density has probably improved quite a bit since then.

3. The changing clinical profile of celiac disease: a 15-year experience (1998-2012) in an Italian referral center.” Authors: Volta, U., Caio, G., Stanghellini, V., and DeGiorgio, R. Published in BMC Gastroenterology, 2014, 14:194, online November 18, 2014.

Background: Many patients with celiac disease have “atypical” symptoms, or, in some cases, no symptoms at all.

Objective: To see if celiac patients’ presenting symptoms have changed over time.

Methods:  A retrospective review of 770 patients with celiac disease over a 14 year time period.

Patients were classified into 3 groups (Oslo definitions):

  1. Classical celiac disease: malabsorption syndrome with diarrhea and weight loss
  2. Non-classical celiac disease: Gastrointestinal symptoms (except for diarrhea) and extraintestinal symptoms
  3. Subclinical celiac disease: no symptoms or mild symptoms

The 3 groups were compared over 2 time periods, 1998-2007, and 2008-2012.


1998-2007: 47% classical, 43% non-classical, and 10% silent/subclinical

2008-2012: 58% non-classical, 29% silent/subclinical, and 13% classical

Frequent gastrointestinal symptoms in all subjects: diarrhea (27%) , bloating (20%), aphthous stomatitis (canker sores) (18%), constipation (13%), and gastroesophageal reflux disease (12%).

Frequent non-gastrointestinal symptoms: anemia (34%), abnormal liver function tests (29%), and recurrent miscarriage (12%). 52% had abnormal bone mineral density and 26% of the celiac patients in this study population also had autoimmune thyroiditis.

Conclusion: The clinical presentation of celiac disease has markedly changed over time, with the bulk of celiac patients having a non-classical presentation at time of diagnosis.

My opinion: Based on these findings, I feel like everyone should be screened for celiac at some time during young adulthood, as reflux, constipation, etc. are such common symptoms in the general population.

As always, thank you so much for reading, and please feel free to share any research that you have come across and found to be interesting in the comments section.




Probiotics and Celiac Disease

Up until last year, the only thing which I knew about probiotics are that they are “good” bacteria which some people take to improve gut health. I began to see more and more posts about probiotics on the Celiac forums and I became curious. I asked my primary care physician if I should be taking probiotics for my Celiac Disease and he said no. I asked my gastroenterologist if I should be taking them and he also said no. I did not heed their advice and went to a local health foods store to buy one anyway. I told the nutritionist that I was gluten free due to Celiac Disease and was sold one that contained barley grass as an ingredient! At this point I was about 4 weeks postpartum and had a screaming baby and toddler at the health foods store with me when I made my purchase (so was a tad bit distracted). Fortunately, I was able to return the gluten-filled probiotic, and since then I have learned quite a bit.

Probiotics are healthy bacteria which keep the microflora (bacterial balance) of our digestive systems intact and prevent overgrowth of “bad” bacteria. The normal human GI tract contains 400+ types of probiotic bacteria. The largest group of probiotic bacteria in the intestine is lactic acid bacteria, of which Lactobacillus acidophilus, is the best known. Probiotics are found naturally in certain foods, such as yogurt, and are available as dietary supplements. Probiotics are often prescribed alongside antibiotics to prevent the depletion of “good” bacteria during antibiotic treatment for infections. They are also used to prevent recurrent yeast infections, during recovery from infectious diarrheal illnesses, and in some cases of intestinal inflammation, such as that seen in inflammatory bowel disease.

In 2005 there was a study done by O’Mahoney et al, which showed a marked improvement of GI symptoms (abdominal pain, bloating, and diarrhea) in patients with Irritable Bowel Syndrome who took probiotics compared with placebo (see reference). Adult and pediatric patients with Celiac Disease have recently been shown to have low levels of a probiotic species called Bifidobacterium in their digestive tracts (see reference).

A group of researchers from Argentina recently evaluated the benefit of giving probiotics to patients with Celiac Disease and published their results in the February 2013 issue of the Journal of Clinical Gastroenterology (see reference). They gave patients with untreated Celiac Disease (just to clarify, these patients were still eating gluten) a probiotic called Bifidobacterium infantis for a 3 week course and compared them to controls who took a placebo. 86% of the Celiac patients had evidence of leaky gut (called increased intestinal permeability) at the beginning. At the end of the 3 week period they evaluated for a difference in leaky gut and found no difference between the group of Celiacs who received the probiotic and the group which did not. In the discussion at the end of the article, the authors admit that their lack of difference between groups may be due to the short duration of the study and/or the fact that the probiotic administered only contained one strain.

To date, there have been no studies evaluating the effect of probiotics on the symptoms of patients with Celiac Disease who are being treated with a gluten free diet. I think that most of us with Celiac Disease who are interested in probiotics are patients who are already gluten free but not feeling 100% better, having symptoms of leaky gut, multiple food intolerances, and/or want to optimize our treatment. If a patient with Celiac Disease is not following a gluten free diet, then I think that it is less likely that he or she would be interested in taking probiotics. So, as with so much of Celiac Disease, we, the current patients, are the subjects.

Based on the “experts” in the social media world and my own experiences I have learned the following about selecting the right probiotic:

1. Make sure that your probiotic is gluten free and also free of other foods to which you may have intolerances, such as lactose or soy.

2. The higher the bacteria count (CFU), the better.

3. The probiotic should contain at least 2 different strains of bacteria, of which one should be Lactobacillus.

4. Probiotics should be taken on an empty stomach.

5. Once you begin taking a probiotic, you will experience a 24 to 48 hour period of digestive distress. This is normal and I believe is part of the war between the “good” and “bad” bacteria in your intestines. This will improve with patience and time.

I have been taking an over-the-counter (OTC) probiotic called Florajen 3 for the last 6 months or so with a good effect. It costs about $24.99 for 90 capsules, a 3 month supply, and is gluten, soy, dairy, and corn free. Other probiotics which I have seen good reviews for include Culturelle and Align, which are OTC, and VSL #3, which is by prescription only.

Since starting the probiotic my digestive symptoms and sensitivities to other foods have improved. As I have read and researched this area further, I have also decided that if/when my kids need antibiotics in the future, that I will make sure that they take a probiotic at the same time to maintain a healthy gut flora (due to them all having a high risk of gluten-related issues due to a genetic predisposition to celiac disease).  From all I have read about probiotics, I feel that the benefits far outweigh the risks for those of us with gluten-related illnesses.

Thank you for reading! If you are currently taking a probiotic, I would love to hear your experiences and advice.

*Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!