Category Archives: Future Testing/Treatments

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Interleukin-15 and Celiac Disease

IL-15 is an important cytokine (immune system protein) involved in celiac disease. In those of us with celiac, ingestion of gluten triggers the release of IL-15 by cells in the lining of our small intestines. IL-15 stimulates the production of intraepithelial lymphocytes (IELs) which are unique immune cells found in the lining of the small intestine—these are often seen on our intestinal biopsies when we are first diagnosed with celiac disease.

Based on the work of Dr. Jabri and colleagues at the University of Chicago, we know that IL-15 has 4 major roles in celiac disease. It is involved in all of the following:

  1. Loss of tolerance to gluten.
  2. Loss of immune system regulation.
  3. Epithelial cell destruction in the small intestines.
  4. Promotion of the growth of aberrant, or abnormal, IELs.

IL-15 is involved in the development of both non-responsive celiac disease and refractory celiac disease. Non-responsive celiac disease (NRCD) is diagnosed when one has persistent symptoms, elevated celiac antibodies (i.e. TTG-IgA) and/or small intestinal damage after at least 6 to 12 months on the GF diet. Although most cases of NRCD are due to accidental ingestion of gluten, a small percentage of cases are due to refractory celiac disease, which involves persistent symptoms, antibodies and intestinal damage in the presence of abnormal IELs. Refractory celiac disease, which can associated with the development of lymphoma, is difficult to treat as it does not respond to the gluten-free diet.

AMG-714 is a monoclonal antibody that blocks IL-15. I was given the opportunity last month to interview Dr. Francisco Leon, MD, PhD, the CEO and CMO of Celimmune, a company that is investigating the use of AMG-714 as a treatment for celiac disease. According to Dr. Leon, Celimmune has two Phase IIb clinical trials of AMG-714 in the works. The first, which will take place in European centers, will be targeting subjects with non-responsive celiac disease. It will involve subcutaneous injections of AMG 714 every 2 to 4 weeks. The second trial, which will be centered in the U.S. (New York and San Diego), will involve the intravenous dosing of AMG 714 to subjects with refractory celiac disease. They aim to recruit 24 subjects with refractory celiac disease, starting in March 2016, for the U.S. trial. Please see clinicaltrials.gov in upcoming months for more information on study design, enrollment criteria, etc.

The bottom line, from my discussion with Dr. Leon, is that help is on the way for those with persistent symptoms despite being on strict gluten free diets and that we will soon be able to tailor our management of celiac disease to our specific needs and lifestyles.

For more information on IL-15, AMG 714, and other celiac therapeutic agents in development, please see Dr. Leon’s recent article (reference #3 below).

References:

Valérie Abadie and Bana Jabri. IL-15: a central regulator of celiac disease immunopathology. Immunol Rev. 2014 Jul; 260(1): 221–234.

Rubio-Tapia, A, Hill, ID, Kelly, CP, et al. American College of Gastroenterology. ACG clinical guidelines: diagnosis and management of celiac disease. Am J Gastroenterol. 2013; 108: 656-76.

Leon, F and Llewellyn, B. Experimental therapeutics for celiac disease and refractory celiac disease. Drug Discovery World. Spring 2015. 73-78.

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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. 

 

 

 

 

The CeliAction Study is Continuing to Recruit Subjects with Celiac Disease

I’ve recently been notified that the CeliAction Study is continuing to recruit subjects with celiac disease. ALV003 (an enzyme) is being investigated as a treatment to augment the gluten-free diet by providing protection from gluten cross-contamination. It is also being researched as a treatment for nonresponsive celiac disease.  All questions about this post will be answered by a CeliAction Study representative. I just returned to “real life” after running the NYC marathon for Team Gluten-Free and I look forward to sharing my experience with all of you soon in a separate post. Thank you for reading!  -Jess

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National study to help advance celiac disease research

The CeliAction Study is a clinical research study designed to evaluate an investigational drug for celiac disease. The study will explore whether the investigational drug is able to improve the damage in the lining of the intestine caused by ingesting even small traces of gluten. The study will also evaluate whether the investigational drug improves any symptoms of celiac disease.

You may qualify for the CeliAction Study if you:

  • Have been diagnosed with celiac disease by a healthcare professional
  • Are attempting to be on a gluten-free diet
  • Have experienced at least one moderate or severe symptom of celiac disease in the past month

There are other criteria that you must meet to qualify for participation. The study staff will explain the requirements to you and answer any of your questions.

As a volunteer in a clinical trial, you may:

  • Participate in a research process that may lead to new treatment options
  • Learn new information about your health
  • Receive study-related care from qualified physicians

To learn more about this research study, visit www.CeliActionStudy.com or call 1-855-3333-ACT.

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Potential Future Celiac Treatments

I think we all know that the only current treatment for celiac disease is the gluten-free diet. Most days I think that it’s awesome that the only “thing” I have to do to treat my autoimmune disease is watch what I eat. I am grateful that I don’t have to take any pills, do self-injections, etc. But some days, especially when I travel or have to eat outside of my gluten-free home for an extended period of time, I don’t feel quite so enthusiastic about having celiac disease. I fear getting “glutened” when I am away from home. And it takes my body a good 2 to 4 weeks to totally recover every time I am accidentally exposed to gluten.

Recently reading about and reviewing some of the potential future treatments for celiac disease has given me some hope for a future life as a celiac with fewer “glutenings” and an improved quality of life.

According to a recent paper published in the journal Gastroenterology Report (see reference below), there are 3 main categories of potential treatments for celiac disease: gluten detoxification, intestinal permeability modulation, and modulation of the immune response to gluten. I’ll try my best to explain each in a bit of detail.

Gluten detoxification involves making some sort of modification or change to gluten so that it will not cause an immune response. Some of the research in this area has involved the genetic modification of wheat. The bulk of the research in this area, however, involves enzymes that break down gluten into small, non-toxic fragments that do not cause an immune response. The CeliAction Study, which I have previously written about, is phase 2 clinical trial of a drug called ALV003. ALV003 contains 2 enzymes (EP-B2 and SC PEP) that break down gluten into non-toxic fragments. Additional therapies currently being studied include probiotics, AN-PEP, and STAN1. These enzymes are all intended to augment, not replace, the gluten-free diet. ALV003 is also being studied as a treatment for nonresponsive celiac disease.

Intestinal permeability modification involves tightening up the gaps between the cells in our intestinal tissues. For those of us with celiac disease, ingesting even trace amounts of gluten can lead to an increase in intestinal permeability (also known as leaky gut) through the action of a protein called zonulin. Larazotide acetate, which is currently in phase 2 clinical trials, is the main celiac drug being studied to modulate this zonulin-induced increase in intestinal permeability after gluten ingestion. Like ALV003, larazotide acetate is anticipated to augment the gluten free diet and help prevent symptoms from gluten cross-contamination.

The third category of therapies modulate, or block, the gluten-induced immune response in celiac disease. Nexvax 2, also known as the “celiac vaccine,” contains 3 peptides (small portions) of gluten. Exposure to these small amounts of gluten in the vaccine induces a change in the immune system, preventing subjects from having reactions when they ingest gluten after receiving the vaccine. In other words, gluten tolerance develops. Based on the lecture on Nexvax 2 that I heard at the International Celiac Disease Symposium in 2013, this vaccine may actually eventually replace the gluten-free diet and celiac patients who receive the Nexvax 2 may be able to return to their pre-diagnosis diets containing gluten.

Additional therapies in the immune modulating category include parasites, such as whipworms and hookworms (see link), monoclonal antibodies like those used in inflammatory bowel disease, and CCX282-B (involves CCR-9 blockade and is so complicated that I am unable to fully understand it and explain it).

I look forward to the possibility of being able to take either ALV003 or larazotide acetate in the future to prevent symptoms from accidental gluten ingestion/cross-contamination while eating gluten-free outside of my home and travelling. I am unsure about the celiac vaccine. I understand that many of you dislike the notion of ever having to take a “celiac drug” and that is okay. I respect the fact that many of you would opt to decline these therapies if/when they become available and I hope that your doctors will do the same. I, for one, am excited though!

Reference

Castillo, N., Thimmaiah, G., Leffler, D. The present and the future in the diagnosis and management of celiac disease. Gastroenterology Report. 2014, 1-9.

gluten challenge

Hope for a Less Challenging “Gluten Challenge”

The current “gold standard” tests for celiac disease include testing for celiac antibodies in patients’ blood and performing an endoscopy to obtain small bowel biopsies. In order for these tests to be accurate, one has to be eating gluten up until the time of testing.  If a patient is already on the gluten-free diet when these tests are done, the diagnosis of celiac disease can easily be missed.

Since starting this page I’ve encountered many people who have decided that they’d like to be tested for celiac disease after starting on the gluten-free diet.  Per the celiac disease experts, a “gluten challenge” must be performed in these cases to assist in the diagnosis of celiac disease. A gluten challenge requires eating foods containing gluten for a prescribed period of time prior to an endoscopy and/or blood testing for celiac disease. The length of time and amount of gluten that need to be consumed for a gluten challenge vary from source to source. Here are some examples of different recommendations for a gluten challenge (current as of July 5, 2014):

University of Chicago Celiac Disease Center: “For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge. Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy.”

Celiac Disease Center at Columbia University: “In individuals who are willing to further pursue the question of whether they have celiac disease, we will advise a gluten challenge. This consists of ingesting at least 4 slices of bread a day for one to three months followed by an endoscopy and biopsy. There is no evidence that following antibody tests is beneficial in establishing a diagnosis of celiac disease because these tests are not sensitive in this setting.”

Celiac Disease Center at Beth Israel Deaconess Medical Center: “Gluten is reintroduced into the diet and after a period of time (ideally 6 to 8 weeks if the challenge can be tolerated for that long) blood tests and an intestinal biopsy are performed. If the gluten challenge is not tolerable for the full 8-week period blood tests and biopsy can be performed sooner but this can lead to a false negative result.”

In addition, Dr. Leffler and colleagues published a paper in 2013 showing that the majority of patients with celiac disease will test positive after eating >3g gluten/day for 2 weeks. A typical piece of wheat bread contains about 5g of gluten.

Despite all of the confusion, there is hope on the horizon for a shorter gluten challenge in the future.  Researchers at the Walter and Eliza Hall Institute in Australia have been developing a blood test that measures gluten-reactive T cells, immune cells that increase in response to gluten in those with celiac disease, via cytokine release assays.  In a pilot study published earlier this year, patients with celiac disease had a significant jump in blood levels of gluten-responsive T cells, compared to controls, after only 3 days of consuming gluten. Per Dr. Jason Tye-Din, one of the researchers working on this test, “We hope that larger studies can validate these findings and establish its role in the diagnosis of celiac disease.” For the sake of my gluten-light kids, and everyone else who is in a similar situation in regards to diagnosis, I hope he is right.

A press release regarding the study can be found here.

Out of curiosity, have any of you been diagnosed with celiac after doing a gluten challenge? If so, do you remember how much gluten you had to eat and for how long prior to testing?

Full reference:

Ontiveros NTye-Din JAHardy MYAnderson RP. Ex-vivo whole blood secretion of interferon (IFN)-γ and IFN-γ-inducible protein-10 measured by enzyme-linked immunosorbent assay are as sensitive as IFN-γ enzyme-linked immunospot for the detection of gluten-reactive T cells in human leucocyte antigen (HLA)-DQ2·5(+) -associated coeliac disease. Clin Exp Immunol. 2014 Feb;175(2):305-15.

 

The CeliAction Study

A significant percentage of patients with celiac disease continue to have gastrointestinal symptoms and/or small bowel inflammation while on the gluten-free diet. The Celiaction Study is recruiting subjects with celiac disease to test a medication that will help improve symptoms of celiac patients who are already on the gluten-free diet. Since this is a sponsored post, all questions will be answered by a CeliAction Study representative. Thank you!  -Jess

celiaction

Did you know there isn’t a single drug approved to treat celiac disease? Currently, attempting a gluten-free diet is the only option recommended by doctors, but a clinical research study called the CeliAction Study is researching if an investigational drug improves any symptoms of the disease.

You may qualify for the CeliAction Study if you:

  • Have been diagnosed with celiac disease by a healthcare professional
  • Are attempting to be on a gluten-free diet
  • Have experienced at least one moderate or severe symptom of celiac disease in the past month

If you participate in the CeliAction Study, you:

  • Will be able to maintain your current diet restrictions
  • Will be provided with study-related care at no cost
  • Do not need medical insurance to take part
  • May be compensated for time and travel
  • Will help advance medical research for celiac disease

To learn more about this research study and see if you qualify, visit www.CeliActionStudy.com
or call 1-855-3333-ACT.

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The Gluten Contamination Elimination Diet

As many of us already know, there are some celiacs who are “refractory” and continue to have ongoing symptoms after going gluten free. In addition, there are a bunch of us who are “super sensitive” in terms of reactions to gluten cross-contamination. I am one of the super sensitives. Not too long ago I had a reaction from eating one bite of a Trader Joe’s “no gluten ingredients” brownie which I had prepared in my own gluten free kitchen for a potluck.

Just last week, Dr. Fasano and colleagues published a research paper on the effects of 3-6 months of a diet of exclusively whole, unprocessed foods on the symptoms of celiac patients who had no improvement while eating strictly gluten free. In this study patients were considered to have non-responsive celiac disease (NRCD) if they failed to respond to the gluten free diet or had a recurrence/relapse of symptoms despite being gluten free. Steroids are currently the standard of care for treating NRCD, which as we know can have serious side effects.

The researchers coined their diet the “Gluten Contamination Elimination Diet.” Here is the breakdown of foods with are allowed and prohibited on this diet:

Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade.

Not allowed: millet, sorghum, buckwheat or any other grains, seeds, or flours; frozen, canned, or dried fruits and vegetables; lunch meats; ham; bacon; seasoned or flavored dairy products; processed cheeses; flavored and malt vinegars.

Basically, all processed foods are eliminated. Of note, dairy is not reintroduced until week 4 of the diet.

17 patients with NRCD, all female, were placed on this diet for an average of 3-6 months. 14 of the 17 (82%) significantly improved on the Gluten Contamination Elimination Diet. Of those who did have biopsies performed after the diet, all but one had resolution of their villous atrophy. This is important information as there have been a lot of recent studies showing that persistent villous atrophy is common in celiac disease. Most of the patients in this study were able to eventually resume a “traditional” gluten free diet.

It has taken me over 3 years, and a lot of trial and error, to figure out the foods which my body loves and hates. Interestingly enough, my body’s food preferences are almost identical to the foods on the “allowed” list in this diet. Had I known about this diet, and adhered to it when I was first diagnosed, it would have saved me a ton of pain and anguish. I am optimistic that this diet (or a similar version) will become the standard of care for those newly diagnosed with Celiac Disease, and I hope that this happens sooner than later. If we work together, we can get the word out!

Reference: “Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients.” BMC Gastroenterology. 2013. 13:40 (e-pub).

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A Glimmer of Hope (for Increased Awareness of Gluten-Related Problems)

I recently came across a discussion concerning celiac disease on a physician-only internet forum.  Here are some of the (anonymous) comments which were posted:

“Ugh. Is there any disease more boring and worthy of turfing to the GI guys than Celiac Sprue?”

“Celiac disease – so little known, so much to know, so important to know”

“Celiac disease is easy to diagnose ONCE SUSPECTED! We can easily suspect in a child with diarrhea and an adult with the same in chronic state, but in the face of generalized inanition, neuropathy, or other intestinal disorders, or teen age diabetes onset, it doesn’t readily pop up in one’s conciousness. Yet recent studies have suggested that as many as 1 in 5 with celiac disease will have a variety of neurologic and other symptoms. I know in my practice I can look back and see a number of patients whose symptoms might nowadays suggest a strong need for screening. It is with regret that I look back on their years of suffering without a chance for their improvement with a gluten free diet or study of the nutritional factors disturbed by gluten deposition.”

“Most physicians are missing the Celiac Disease because they diagnose it as IBS.”

“Its very hard for patients to stick to a gluten free diet, unless the entire family goes gluten free, which most don’t. I am seeing many more gluten free products in the stores, though, especially baking mixes and crackers/cookies – makes it easier. But I have tasted some gluten free cookies. I decided that gluten is good.”

“Hey, did y’all know that most American soy sauce is mostly fermented wheat?”

And then I came across this comment, a true treasure, which made me feel like the time I had spent reading through the other comments was actually worthwhile. I wish that I could meet this physician in person and give him or her a huge hug!

I diagnose and successfully treat many children with gluten intolerance who do not meet the typical diagnosis of celiac. I screen all kids with neuropsychiatric and immune dysfunction for the HLA DQ2 and DQ8 genetic markers. If the patient is positive, I inform them they do not necessarily meet celiac diagnostic criteria, but the gold standard is a trial off gluten. IF the child is way better ( which they often are), the family is sold on the diet, even if it takes a lot of work. 

As for the kids who get worse gluten free, (many are autistic), they are usually soy or corn sensitive, and as they remove gluten they increase their soy and corn consumption and get worse. There are many families that seem more sensitive to soy and corn than even gluten, (GMO?), any trial off gluten, a family must be warned of this potential adverse effect so they are not surprised. Also, patients dont feel better for up to 2-3 weeks, in the beginning they have gluten withdrawal and get worse.

For all of you that believe the gluten free life is hard, it is far harder to have a severe autistic, anxious, depressed or ill child. Most families are more than willing to endure the trouble when they see their kids thrive. Don’t assume they will do poor.

As for those who say that they will have nutritional deficiencies, GIVE ME A BREAK, many cultures all over the world are free of gluten, it is not needed for human life. It just takes education, plus they eat less processed foods, which all Americans could benefit from.

Looking for this in my patients has changed my whole practice, and the lives of my families. We dont have IBS in our office, no functional abdominal pain, no chronic fatigue. Gluten intolerance is not all that we do for those conditions, but it is a good place to start. Children are suffering for reasons that are treatable, not “stress”.

This last post gave me hope that awareness of gluten-related disorders is finally increasing within the medical community, especially in pediatrics. It’s about time!

 

bacteria

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!

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