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!


121 thoughts on “Probiotics and Celiac Disease

  1. Anne Fitzgerald

    I have taken the same probiotic as you. I can’t say I have noticed any dramatic results, but I do know I only rarely get yeast infections + if I feel one coming on , I incrrase to 2-3 caps/day.

    1. Susan

      Thank you for your information on probiotics. I have been diagnosed with Celiac Sprue for 4 years now. My sister was the first in our family to get diagnosed after 20 + years of an undiagnosed rash (dermatitis herpitaformis) which only 10 percent of Celiac Sprue Patients present with. I always bloated after eating and it progressively worsened over the years. I begged my dr to test me and I wasn’t eating wheat at the time and she said it didn’t matter…BUT it does! My first test was negative and then symptoms worsened and I ate gluten and then was tested again and it was positive. It’s been a journey though because of so much hidden gluten in products…especially supplements! I was taking metamucil capsules to increase my fiber then I switched to kirkland brand and became very sick over a few months and started researching everything I placed in my mouth and low and behold the carmel coloring in the kirkland fiber capsules was made with barley!! Since then I am so strict about everything I place in my mouth. I did get leaky gut syndrome from the small intestine damage so I gave up milk products and switched to soy and over a period of time the soy made the leaky gut worse! My symptoms are mostly bloating and constipation which is still considered irritable bowel syndrome. Diet is so very important. When we are reacting to certain foods from leaky gut such as dairy, soy and corn, it is best to avoid these foods for a while to let your intestines heal and I am a true believer in probiotics. I take them everyday and I was wondering if you think we should be taking the probiotics with prebiotic fiber? I also heard that Kefir is even better probiotics if you can tolerate dairy. Thank you for your blog and I wish you all the best on this journey…and I hope your children don’t get Celiac Sprue.

      1. Janine

        Prebiotic fiber is exactly what the probiotics in you gut microbiome need to eat. This allows them to replenish themselves and keep on doing all the beneficial things they do for us. Eating fermented foods such as sauerkraut, kimchi, pickles of all sorts provide us with a wonderful array of pro and in some cases prebiotics as well. Green bananas, nuts, the dark green parts of leeks are a few examples of prebiotics which = food for probiotics in your intestines.

  2. Jess Post author

    Hi Anne,
    I guess that we’re the only ones to take probiotics! That is good advice to double or triple them if needed, that is something that I had not thought of, or heard of, before. I feel like my GI symptoms related to other food intolerances have lessened which makes me think that perhaps I d0 have a component of IBS in addition to Celiac Disease.
    I hope you are feeling well!

    1. Laura

      I was eating fermented food because I saw only dairy kefir, and its do difficult to find dairy free probiotic. I will try these dairy & gluten free probiotics but keVita is a dairy free kefir ption. But now after reading the mcas article I won’t drink because it is fermented? So capsule probiotics for histamine issues like yours Jess?

  3. Vicki

    Thank for you for writing this article. I was recently diagnosed Celiac and was wondering if a probiotic would be beneficial given the ravaging of my intestines by this disease. I am going to start talking one, keeping in mind your advice above, and will comment back in a month or so to advise of the results.
    I’m also sending a link to this article to my sister, who is a pastry chef, was diagnosed Celiac last year, was forced to quit her job, and has since opened a gluten free bakery (her bread is amazing!).

    1. Jess Post author

      Hi Vicki,
      I hope that you start to feel better soon. Out of curiosity, were you screened for Celiac because of your sister’s diagnosis or were you having symptoms yourself? There seem to be a lot of us who have been unsuccessful convincing our relatives to get screened…
      Please report back on your experience with the probiotic. There have been no new major publications on the topic since I wrote this in January. Also, feel free to share your sister’s bakery name and info on here as well!
      All the best on your road to healing!

      1. Vicki

        Hi Jess,
        Thanks for the well wishes. I didn’t get tested because of my sister’s diagnosis, and when I got the results I thought it was crazy. I was tested because of chronic anemia that couldn’t be explained any other way. Celiac disease inhibits iron absorption. My GP had me tested, and my Tissue Transglutaminase Ab IgA results were > 100. I was impressed that my GP had me tested for Celiac disease. He didn’t know my sister had an intolerance. I noticed a difference after switching to a gluten free diet. It was an epiphany because in retrospect I did not feel great after many meals. Though I never felt really bad as I heard Celiac’s do, so I never connected it with a gluten sensitivity. Happily since I’m a foodie, I feel good after eating now and really do notice when gluten is mistakenly in a meal. My anemia is also improving.

        I’ll let you know how the probiotic trial goes.

        The best gluten free bakery in Vancouver, B.C. is Lemonade Gluten Free Bakery. Google it!

        1. Jess Post author

          Hi Vicki,
          I did just google it and if I am ever in Vancouver (which is on my list of cities which I’d love to visit), I am going to stop in and try the apricot blackberry crostata! I hope that you don’t mind if I share the website:

          1. Allyson Clark

            Lemonade is my favourite bakery!!! Please tell your sister she is a superstar in the celiac community here!!

  4. Pingback: So you just found out that you have Celiac Disease….now what? | The Patient Celiac

  5. Ellen


    I am so glad that I found your site, and specifically this post. My daughter age 18, was recently diagnosed with CD. We never knew WHY she was so lethargic, irritable and feeling rotten. We attributed it to the fact that she was a high school senior an had “serioritis.” She started a job in January at a bakery/sandwich shop called Kneaders, here it Salt Lake City. Within 2 weeks of starting her job she got sicker, and sicker. We just kept attributing it to the above reasons. She was so sick with cycling bowel issues, that I took her to the doctor. Her labs were somewhat abnormal. Thyroid ok, TTG high >109, WBC low, anyway long story short through the biopsy and labs, confirmed Celiac. It has only been 2 weeks, and she is starting to feel a lot better already. She promptly quit the job at the bakery. I am sad that it took working in the bakery to finally get things bad enough that we knew something was really wrong. The diagnosis has been hard, but we are moving along. I just have been wondering about a probiotic for her, whether it would be beneficial at this early stage, or should we wait to see how she does for a month or two before adding that to the mix. I also wonder about what other vitamins I should add in, or if I should add any at all. Should I ask her GI doctor to do more tests on her levels of vitamins and minerals, to find out about deficiencies? Any thoughts or inputs would be great. This is the first comment I have posted, I have done tons of reading but have not spoken up yet. I feel so new to all of this. Thanks!

    1. Jess Post author

      Hi Ellen,
      Thank you so much for writing. First of all, I am glad to hear that your daughter has been diagnosed and is finally starting to feel better. I hope that she continues to improve.
      I am a huge advocate of taking probiotics. There has been a lot of recent been a lot of recent research showing that patients with Celiac Disease +/- IBS have altered gut flora and an overgrowth of “bad” bacteria. I think that this somehow is playing a role in the additional food sensitivities that so many of us develop. I have been very happy since starting on Florajen 3 last fall, which is over the counter and relatively inexpensive, and had I known the benefits, I would have started taking a probiotic back when I was diagnosed 3 years ago.
      As for vitamin and mineral deficiencies, I actually just wrote about this in my post from yesterday regarding the management of celiac disease in adults. I will share the link, but, yes, we are all at high risk of deficiencies, and, unfortunately, a lot of physicians do not know to monitor their Celiac patients for these. The two main ones that need checked and replaced, are Vitamin D and Vitamin B12, but there are several others which I address in my post, such as folate and thiamine.
      Thank you for writing and please fire away with questions. We are all tangled in this big Celiac web together.

  6. Lisa

    I have taken probiotics when I can afford them. I had much relief and success with a generic sold under the store label until they discontinued it. Then I cast about and settled on Culturelle, with which I have had markedly less relief or success.
    I have celiac disease with yeast overgrowth, treating by avoiding gluten and using Lotrimin powder spray for the yeast. With the generic probiotic which also contained prebiotics, within 6 weeks I experienced relief from acid reflux, gas and bloating, recurrent nausea, and what may or may not be heartburn. Within 8 weeks, there was a noticeable reduction of the yeast overgrowth in all areas where it had been growing. Within 6 months, the yeast had disappeared, all the digestive distress was gone and I was even able to stop wearing pads for urinary leakage, a patency problem apparently associated with the yeast. Within 6 weeks of having to stop taking the generic pre/probiotic because of lack of availability, all these symptoms began to return, and within 3 months were back in full force. Now I’m taking Culturelle with noticeably less success or relief.
    Some of the research I’ve done into information available on the internet leads me to think the reduced effectiveness may be due to the lack of prebiotics and/or lack of proper handling of the packages in-store and in transit, resulting in the death of too many of the bacteria.

    1. Jess Post author

      Hi Lisa,
      Thanks for sharing your experience. I am sorry that you have not found a good replacement probiotic for the generic one which sounds like it worked so well for you. What store brand was it that you previously took? Was it refrigerated? Do you know which type(s) of bacteria it contained? Lastly, have you tried a prescription probiotic? I have interacted with very few Celiac patients who actually take probiotics, so any info/advice for others would be much appreciated!
      As for the yeast overgrowth, did you ingest the Lotrimin powder? If so, how did you know how much to take/dosage?
      Thanks for writing!

  7. Kerie

    Thank you for posting this. I am forwarding to a friend with celiac.
    One thing I was told by a nutritionist : If you take antibiotics and probiotics – very important to space these out as they can cancel one another if taken together. For example, antibiotic taken at 3 pm followed by probiotics at 6 pm – OR probiotics at least 2 hours before antibiotics. This gives the digestive system enough time to put each to use without interfering with the other.

    1. Jess Post author

      Hi Kerie,
      Thank you so much for the advice about spacing out antibiotics and probiotics. I hope that a lot of people will read this and be helped by it. Please let your friend with Celiac Disease know that she can “stop by” and ask questions at any time!
      All the best to you…

  8. Paula

    Thanks for posting this! I’m about to buy probiotics from a company called Custom Probiotics. They carry different formulas of bacteria. I just called the company and they said a celiac should take the 6 strand powder formula. Their stuff is gluten, dairy, soy, corn and GMO free. After reading this I’m going to give it shot! Thanks for the post!

    1. Jess Post author

      Hi Paula,
      I am glad that you were able to find a probiotic that sounds like it will work for you. It’s really just a day or 2 of gastrointestinal upset (and a lot less discomfort and pain than a glutening!) Please report back and let us know if you like this brand of probiotic and/or if you have any other info to share for others who may read this and benefit. Since writing this post last Feb I have started all 4 of my kids on probiotics as well.
      Thanks so much!

    2. Hilda Neira

      Hi, I also take custom probiotic the CP1 and have been for a year, which for me has made all the difference in the world for my the pain I had in each side of my colon. No more diarrhea and pain. I take the 5 strain though cause the 6 strain is not affordable for me. I have not gone to a doctor I am self diagnosed gluten intolerant although I really think I am Celiac because I am really sensitive to even the smallest trace of gluten. Right now I have been hit out of nowhere with allergies I have never had. My nose is stuffed up and without relief unless I take the Afrin, but I have been using it so much that it doesn’t work anymore. I was have been to a doctor who told me to take Claritin D for seasonal allergies. But its not helping much. I bought the Quecertin with Bromelain and I started taking it yesteday, but I heard its not magic and may take up to two weeks to kick in. At this point I am so miserable crying out to God for help. I don’t know if the Probiotics I bought from another website same ones customs Cp1 are dead or what? because I don’t think they are working. I am a hot mess without insurance and with a great need to get better. My theory is that my gut must be so inflamed that is causing my immune system to attack me with Histamine and I don’t know how to calm it down. conventional doctors don’t believe in natural remedies and they can give you a wrong diagnosis making things worse. I am here in Miami and going to an allergist without insurance is 275.00 just to see the doctor and not to mention the tests. And going to a gastro Dr is just as bad. I am looking to get insurance and its so expensive. My husband is a pastor and we live in a pastor salary of not enough to pay all of the expenses of this decease. I am believing God for my healing, but in the meantime I need help with the symptoms. anyone has any advice?

      1. Jess Post author

        Hi Hilda,
        I am really sorry to hear all that you have been going through lately.
        Is there anyway possible that you are getting traces of gluten into your system that could be leading to inflammation, i.e. keeping a shared kitchen? Have you had your Vitamin D and B12 levels taken in the last 6 to 12 months? Are you on any other supplements?
        I was recently diagnosed with a problem called mast cell activation syndrome (MCAS) in which my mast cells (a type of cell of the innate immune system) release too much histamine when triggered. My main triggers for this are foods (gluten, soy, sulfites). In my case I develop flushing, congestion, wheezing, diarrhea, palpitations, and several other systems when my mast cells act up. This is a very different disease than mastocytosis and many doctors do not know about it because the first case reports just came out in the last 5 to 6 years. I have encountered a lot of women with MCAS who also have either Celiac Disease or non celiac gluten sensitivity and I believe there is a link (I just haven’t been able to figure it out yet as the research is lacking).
        Right now I am taking the probiotic Florajen 3, as well as generic Claritin 2x/day, nasalcrom, and quercitin and my symptoms have improved a ton. If you do a google search for MCAS you can find a lot of information, and Dr. Janice Joneja is a good resource. There is also a great interview which The Low Histamine Chef recently did with Dr. Castells, one of the mast cell experts at the Brigham in Boston. I hope that this helps. Feel free to ask any questions.

  9. PW

    I am so glad to have found this site. I have been taking Healthy Trinity probiotics for years. I am not here to “sell” it just to give my experience. I am an identical twin and my sister has been sick with anemia and stomach disorders for years. Finally she was diagnosed with CD. I think my mom had it also. I rarely have eaten many starches including breads, past a and things like that, usually have for dinner low fat protein meat like chicken or lean beef, some fish. We have always bought as much organic and grass fed things as possible, rarely eat out, don’t use microwave, and never by prepared food. I was tested but since I rarely eat things with wheat, etc. it came back negative. I think the reason i don’t have problems is the probiotic, vitamins I take, and our “clean eating”. I am careful not to eat items with gluten, but not a problem because we eat mostly food I prepare at home. Not a big sweet eater. I think the probiotic throughout the years has really helped me, and has been a big reason why I don’t have any of the problems. Since I am a twin, trying to figure out why she has CD and I don’t, although I do intend to get a more sensitive test. Just wanted to give my probiotic experience. I have tried other cheaper probiotics and when I do I start getting colds, and pick up things floating around, rarely get sick with my favorite probiotic. It is expensive and must be refriderated and is a pain in that respect, but I try to keep using it. My sister has never eaten organic or grass fed, don’t know if that could make a difference. Seems like so many unknowns, but she is starting to have a lot of health possibly from all the years of lack of proper nutrition.

    1. Jess Post author

      Hi PW,
      Thanks so much for sharing your experience with probiotics, as well as highlighting the differences between you and your twin. Your experience helps to show that not everyone with a genetic predisposition to Celiac Disease will go on to actually develop Celiac Disease. It seems like there are many out there who believe that they are destined to develop it if they carry one of the genes, even though about 40% of people have at least one copy.
      It is interesting though that you seem to have naturally avoided gluten…it’s almost as if you’ve taken notice of your body’s cues. I think if we were all able to do that, that we’d be much healthier overall!

  10. Melissa

    Would you have the same recommendations for kids. I read that Yum-Yum dophilus is a great probiotic for kids, it does not, however, have Lactobacillus in it. It has: L. acidopilus, L. plantarum, b. breve and b. lactis. I also read for kids they should stay closer to 1 billion viable cells and not the 3 billion that adults have. I chose this one because of information I found on line and that is has no wheat, gluten, dairy, egg fish, peanuts/tree nuts and is sugar free. The coloring in the pill is from beets (not artificial colors). So, I’d love to hear your opinion and also why it’s so important to have Lactobacillus? I haven’t started these yet, and am waiting to see what else I can find on line for information as well as your opinion! Thanks!

    1. Jess Post author

      Hi Melissa,
      It is nice to hear from you. Since writing this article I have started all 4 of my kiddos on probiotics and it has gone very well (and it seems that they are much less susceptible to colds and infections than in the past!)
      The limited amount of research on probiotics in Celiac Disease has shown that we (those of us with Celiac Disease) have lower levels of both Lactobacillus and Bifidobacterium species hanging out in our GI tracts, even after being on the GF diet for years. Because of this, I now think it is best for a probiotic to contain both.
      The one you are asking about sounds awesome because it contains Lactobacillus acidopilus and Lactobacillus plantarum, as well as Bifidobacterium breve and Bifidobacterium. As you can see, the L and B are just abbreviations. If you do decide to start them, I would love to hear how it goes. My kids are on a Nature’s Way chewable probiotic right now called Primidophilus kids, but we’ve been changing it up from time to time.

      1. Melissa

        Thanks Jess! I guess I haven’t done enough research on this! I’ve been researching Celiac Disease for almost 2 years now as the doctors in my neck of the woods truly know little to nothing about it. My middle girl (10) was diagnosed April 2012 and my youngest (6) was diagnosed April 2013. They both still have tummy troubles and the 10 year old has frequent headaches and tummy aches. I don’t know if this will help, but it’s worth a try! We are also trying a more strict diet, I thought a few things that were safe, like Lay’s potato chips, I’ve recently found out may not be safe :( Thanks again for your time and explanation!

  11. Melissa

    I do have one more question . . . . for children, do they take the same dosage as adults? I always find it hard to believe that a 35 pound child (my daughter) would need the same amount as an adult, say my 200 pound husband? The brand I got says 2 a day, I’ve been giving my 10 year old 2 a day, but my 6 year old 1 a day? Thanks again for your opinion and sharing your knowledge!

    1. Jess Post author

      Hi Melissa,
      To my knowledge, there is no toxicity associated with probiotics, so we do not have to worry about a dose being too high. All 4 of my kiddos have been taking 3 billion CFU/day without a problem, but it sounds like there is no harm in what you are doing either! I feel that it is definitely best to trust your instincts with anything involving your kiddos. I a study that was published in the American of Pediatrics’ major journal a few years ago ( the daily dose given to children was 1 billion CFU/day.
      I hope this helps! Questions are welcome at any time…

      1. Melissa


        Thanks again for your reply! I wanted to make sure I was giving enough, yet not too much to my littlest gal.

        Enjoy your day!

  12. Ralna Cunningham

    Hello everyone, I’d like to share what I have learned about probiotics and fermented foods. Kefir is my A#1 source currently.

    It seems when it comes to the gut, diversity is better. People with low diversity in their gut microbiota are prone to illness as the microbes are largely responsible for how the immune system functions, as well as making neurotransmittters, fatty acids and enzymes needed by the body for growth and repair. For example, butyrate is made in the colon by bacteria that ferment fiber and affects cell death, signaling and inflammatory processes including cancer.

    Earlier this year we arrived at a probiotic approach to gastrointestinal illness because my husband had a horrible side effect from an antibiotic after being diagnosed with diverticulitis. He is young and had two extremely crippling attacks of bowel pain, elevated white blood cells. He was prescribed Cipro, an antibiotic in the fluoroquinolone group. The Cipro caused terrible tendonitis pain and weakness all over his body within 12 hours after he took the first dose. He was dealing with the aftereffects of the Cipro for months.

    We decided to follow a different approach since his body needed nutrition to recover from the toxic Cipro effects. He stayed on liquids for a few days to let the bowel rest, and I went shopping for fermented drinks since they are usually easily assimilated. He loved the kefir from the health food store, the fermented veggie drinks, not so much. Fermented coconut water kefir. Lots of homemade chicken broth with collagen from the bones was a favorite.

    We went to a naturopath to try to build up his system after the Cipro. She prescribed Florastor (a yeast that is transient in your gut till your own good bacteria can proliferate) as well as a product called HLC which stands for Human Lactic Commensals (several strains isolated from humans that supposedly adhere and persist better than some probiotics). He took that as well as an herbal supplement called BCQ (bromelain, curcumin, boswellia and quercetin) which have some documented anti-inflammatory properties in the digestive system. He also took a kind of herbal antibiotic capsule that had garlic and something that smelled like poultry seasoning. She explained that if it didn’t work, he would probably need to go on a prescription antibiotic). After all that, plus the best nutrition and supplements including the expensive form of CoQ10 we could muster, he has fully recovered and has not had any more diverticulosis attacks thus far and his digestive system is regular. His muscle and joint pain is resolved as far as we can tell. It was scary, debilitating for a strong guy who has carpentered all his life to be unable to work and think his knees and Achilles tendons could blow out any minute.

    Kefir has a long history of supporting digestive health and has a huge diversity of microbes and beneficial yeasts. It is very easy to make at home and if you obtain traditional kefir grains they multiply and you can share. is a great source, also Cultures for Health has them. The powdered packets you can buy at the health food store don’t have as many microbes and are not as robust of a culture but. You can use almond milk or coconut milk if you can’t tolerate dairy.

    I used it in the bath to help my dry flaky skin and my daughter’s eczema. Go to pubmed and do a search for kefir and you will find people have done clinical studies with it. Kefir inhibits clostridia, giardia and cholera. Kefir affects immune system signaling. It’s really fascinating.

    Kefir may also provide a some amount of Vitamin K2 synthesized by the bacteria. I highly recommend reading Vitamin K2 and the Calcium Paradox, published 2012. The reviews on Amazon provide a great discussion and much new research is coming out of Japan and the Netherlands. K2 is a critical fat-soluble nutrient that is not that common in our modern food supply. The Rotterdam Study found a very protective factor of K2 on bone health and coronary artery disease.

    1. Jess Post author

      Hi Raina,
      Thank you so much for taking the time to share your experiences (and your husband’s story) with all of us. And for all of the information about kefir and the rest of his nutritional regimen. I am a huge fan of quercetin and I did begin to start supplements after writing this article in Feb. I will definitely read up on kefir, K2, and health and perhaps write an article about what I learn (if I do, i will cite you). I hope that others will he helped by all of the information you have shared.
      All of the best to you and your family!

      1. Julie Church

        Jess, would you share the brand of gluten-free quercetin that you are taking? I’ve had hives about 6 months that doctors (dermatologist and now allergist) have not had much luck with making them go away. I’m on antihistamine pills and creams, so they are better, but I’m ready to try something else. Thanks! Julie

        1. Jess Post author

          Hi Julie,
          Jarrow is the brand. I have weaned off of it, but when I was on it I ordered it from Amazon. I am super-sensitive to gluten cross-contamination and never once got ill from it, it’s labeled GF.

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  14. whitney

    I’ve been lactose intolerant for a few years but recently other foods have started making me instantly bloated so after research I think i might have celiac. Went to Doctor today and am waiting for results, However fish just made me bloated. I am on two antibiotics now for 4+ bladder infection could this be too much and the lack of good bacteria be causing my issues? I already take Nutri-health flora source probiotic. I’m wondering if taking more of them would ease my bloating and heartburn. Oh also do you guys take them on full or empty stomach or does it even matter?


    1. Jess Post author

      Hi Whitney,
      I hope that you are able to find an answer to your digestive symptoms. I was given the opportunity to write an article about the role of probiotics in celiac disease for Gluten-Free Living Magazine (it will be in their Jan/Feb 2014 issue) and since then I have learned a lot more about probiotics than I knew when I wrote this article last spring.
      It’s important that the probiotics that we take contain at least 2 strains. The probiotics that those of us with celiac disease are most deficient in are Bifidobacterium and lactobacilli species. A lot of the GF probiotics on the market contain milk proteins, so if you are lactose intolerant, it is important to make sure that your probiotic is dairy free as well. The experts seem mixed on whether or not to take them on an empty stomach. Some of the manufacturers do have specific recommendations for this, so it may be helpful to consult with your manufacturer. It is important to make sure that the antibiotics and probiotics are taken at different times of the day.
      As to whether or not they will help you, I am not sure, but it may be worthwhile to try taking more and see. I am unaware of any side effects from probiotic use. The early research on probiotics and celiac disease has shown an improvement in digestive symptoms when probiotics are taken. I’ve personally experienced this. I have both celiac disease and IBS and I feel that my IBS symptoms have significantly improved since starting on a probiotic.
      Good luck on your road to healing and answers.

  15. Jane M

    I am about 8 months into my Celiac journey. I dropped a large amount of weight before going gluten free and am really struggling to gain it back and no one seems to be able to give me a good answer on how to fix this. 5′ 10″ and 120lbs :(

    1. Jess Post author

      Hi Jane,
      I am sorry to learn that you are going through this. Have your doctors made sure that you don’t have any other conditions going on that may be making it difficult for you to gain weight, such as hyperthyroidism (overactive thyroid gland). I had to gain weight a while back when I increasing my running mileage and I ate a lot of nuts, avocados, oils, Larabars, and potatoes. I also used a lot of almond flour for baking which is calorie dense. I hope that others will be able to pipe in with some answers and suggestions for you.

    2. Vicki

      I was diagnosed the same time as you and am going through the exact same thing.
      I was just yesterday given VSL#3 . I hope this makes a difference, the term refractory keeps coming up at my appointments and is a terrible thought.
      I am eating only a few different foods, not much variety. I hope it is just IBS and not a terrible celiac type causing everything to race through and keeping me way thin. I actually envy fat people now!

      1. Jess Post author

        Hi Vicki,
        I hope that your new probiotic helps you. For me it has made a huge difference. I had about a 4-5 day period when I stopped taking my Florajen a few months ago and all of my IBS symptoms came back.
        Out of curiosity, if you ever see this, why are you only eating a few different foods? Are you reacting to a to a lot of other foods too besides gluten?

        1. Vicki

          Yes, it seemed like I was reacting to anything I would try to add back in. I had a sudden watery very yellow bout on Friday and now Tuesday I feel so much better. I am still very worried about eating anything but wild meat and sweet potatoes. But I am eating pistachios and avocado, lettuce, carrots and celery. This is huge for me. Nearly 4 months ago I had some supposedly gluten free pizza at a national certified chain. Since then I have lost 8 pounds and have seen numerous doctors. It seems that my IBS was set in a downward spiral. I still don’t know what all happened. So just a few days into this I feel a sense of hope. I need it to continue, I am worried about my weight loss. There is not much advice on how to gain weight.

    1. Jess Post author

      Hi Monique,
      I just went on to the VSL #3 website tonight ( after seeing your comment and according to the manufacturer’s information on the website, all 4 VSL #3 products listed are GF. Where did you find the information stating that this product is not GF? I think that it is important that we use this thread to clarify information.
      Thank you! Jess

  16. Melissa

    Hi Thanks for this post — and for the whole blog. A question: why do you say to take the probiotic on an empty stomach? Or rather, I can imagine the idea is that it would be more effective. But the one my 16-yr-old celiac son takes specifies taking it after meals. I’m thinking perhaps he should start taking the probiotic on an empty stomach. He has been having terrible ongoing symptoms despite a verified GF diet. Over the last couple of months we’ve had him on a more restricted diet to eliminate the possibility of trace gluten, as well as possible irritation from FODMAPS. Perhaps for this reason, he has finally started doing better — energy improved, headache gone, stomach better, bowel issues improved, less weak and fatigued. But yesterday and today he is sick again — bad diarrhoea, stomach, etc. It is super demoralizing. But I think he has been forgetting the probiotic, and I wonder if that could possibly be the reason. Or perhaps it’s the effect of not taking it for several days, an then taking it again. I wonder what you think?

    1. Jess Post author

      Hi Melissa,
      Thanks for writing. I am sorry to learn that your son has had ongoing symptoms from celiac disease. How long has he been on the GF diet?
      Since writing this post last year about probiotics I was able to do research to write about probiotics for Gluten-Free Living magazine (my article is in their current issue, Jan/Feb 2014) as well as attend an international conference where probiotics were a “hot topic.”
      If the manufacturer suggests taking the probiotics after meals, then you and your son are best following their recommendations.
      Is his probiotic marked as being GF? I’ve recently learned that Align, which was GF up until 2013 is no marked as being GF as the company has stopped testing.
      Is it possible that he has another food intolerance, i.e. to dairy or soy, that may be causing his continued symptoms?
      If he felt better on the probiotic, and has stopped taking it, then it may be worthwhile to restart it again and see what happens. If he’s been GF for more than 6 months and he’s still having pretty bad symptoms then he may benefit from being evaluated for NRCD (nonresponsive celiac disease) at one of the main celiac disease centers.
      I hope things work out for you guys. This disease is not fun….

  17. Martina

    I also recommend ULTIMATE FLORA 200 billion just great!!

    1. Jess Post author

      Hi Martina,
      Thank you for the cost effective recommendations for pre- and probiotics! It is nice to see that Ultimate Flora is so affordable on Amazon. My only concern with ordering it online would be the lack of refrigeration during shipping. Do you buy it locally or have it shipped?

  18. Martina


    1. Jess Post author

      Hi Martina,
      I appreciate your advice. The experts at the International Celiac Disease Symposium (held in Chicago last Sept) did not recommend that we take the commercially available enzymes to break down gluten because they do not break it down into small enough pieces. The gliadin fragments that remain after using the enzymes are still toxic to those of us with celiac disease. I cannot speak to their effectiveness for other food proteins.

  19. Sherry

    I take probiotics every day and I am Celiac. It helps me so much! If I don’t take them daily I get constipated from iron that I take. It is wonderful stuff!

    1. Jess Post author

      Hi Sherry,
      It is great to hear that probiotics have been helpful for you.
      What brand do you take?

  20. Anna Feldman

    I took the half of a packet of VSL3 probiotic for 5 days, and the first two days i noted an improvement of my IBS. Unfortunately, starting with the third and subsequent three days, I begin to have severe GERDs side affects. Today, I researched what the manufactureer uses in creating this forumla, and I sound they do use some dairy cultures which they say they remove. Additionally, they also use barley which has gluten. I have a gluten sensitivity as well as lactose and casein sensitivity. Therefore, I would caution anyone who has lactose and casein sensitivities and gluten issues to be cautious about using VSL3.

    1. Jess Post author

      Hi Anna,
      Thank for sharing your experience with VSL #3.
      I am unable to find any references showing that VSL #3 is derived from barley outside of a very old blog post by Dr. Scott Lewy (this was prior to the formulation of VSL #3 changing). I did write an article about probiotics for a major GF magazine last fall and when I contacted the manufacturer of VSL #3 last fall I was assured that VSL #3 is GF. It also states that it is GF on their website as well as on the packaging.
      Do you have a recent reference or link regarding the barley that is recent?I checked the website and it is not currently listed as an ingredient. Any additional information would be appreciated.
      Thank you! If indeed the ingredients did change it is important for us to know this.

  21. north korea gi nam

    help me
    Youth of Korea.Age of 21 years old.
    Use the translator.
    I have hyperthyroidism.celiac disease.tropical sprue The disease occurred.
    Treatment of celiac disease, good nutrition let me know.
    iherb Purchase.
    probiotic Recommendation
    bifidobacterium lactis Celiac disease can be cured?
    bifidobacterium lactis Please introduce the products included.
    Let me know celiac disease treatment thank me T_T

    1. Jess Post author

      I am sorry to learn about your celiac disease diagnosis.
      Right now the only medically-approved treatment for celiac disease is following a gluten-free diet for life. Gluten is a protein found in wheat, rye, barley, and most oats, so those of us with celiac disease need to avoid all of these foods.
      It is important that your doctor checks some of your vitamin levels in your blood. Many of us in North America, Europe, and Australia need to take Vitamin D, Vitamin B12, and folate supplements in addition to the gluten free diet.
      Many of us are taking probiotics, although there is not that much research into probiotics and celiac disease yet. If you decide to take a probiotic, try to find one that includes both Lactobacillus acidophilus and Bifidobacterium species. I take one called Florajen 3. I do not know what probiotics you have available in your country.
      I hope that this information helps you. On the first page of my webpage I have links to some helpful celiac websites, including the National Foundation for Celiac Awareness and the center at the University of Chicago. Best wishes to you.

  22. Bob Miller

    Thanks for this information about probiotics. My 18 yr. old son was diagnosed with Celiac’s about 6 months ago. He is a competitive runner and will be running in college next year. We are struggling to figure some things out and would love any help you may have for us. His hemoglobin is in the normal range, most recently 15.7, which is critical for a runner who exerts a lot of energy. Unfortunately his ferritin level has been confusing. It was at 9 in November, rebounded to 40 by early February, with the gluten free diet. But since then has dropped to 35, and now 29. We are really confused about why that level is dropping, and how much of an effect it would have on his energy level for running. He is obviously still struggling to absorb iron for some reason. He is taking a liquid ferrous sulfate supplement daily. We are trying to get some answers before he heads off to college. Any thoughts of where to go next would be greatly appreciated.

    1. Jess Post author

      Hi Bob,
      Is it possible that he is somehow still being exposed to gluten in his diet? There is a huge learning curve for the GF diet, and most of us make tons of mistakes in the 1st year after diagnosis. I have found gluten in bizarre places, most recently in an olive oil cooking spray! I accidentally “glutened” myself about every 4 to 6 wks for the first year after I went GF, the bulk of my exposures were gluten cross-contamination from restaurants. Have the rest of his celiac symptoms improved? Have his celiac antibodies normalized (or are they significantly lower than they were at baseline?) If so, these are good signs that the celiac is under control and that he’s having success on the GF diet.
      Lastly, although this is out of my scope of practice (I take care of premature babies), are we sure that the ferritin of 29 is a problem if his hemoglobin and hematocrit have normalized? I personally had a huge jump in my ferritin and H/H after diagnosis and going GF, but then I dropped into my “normal” range for all of my counts, can’t remember my ferritin but my hemoglobin runs 13 to 14. Just some thoughts.

  23. Alesha

    Jess, thank you for all the great info on probiotics. I have celiac and have been trying to keep it under control with diet. Lately it seems that everything I eat, makes me bloat up like I am 8 months pregnant! Not fun, can you refer me to the probiotics that you have had success with.

    Thank you!

    1. Jess Post author

      Hi Alesha,
      I am sorry that you are still having digestive issues. I have been on Florajen 3 for quite a while and I am very happy with it.
      I am pretty sure that it is available throughout the U.S. I buy mine at my local phramacy (don’t need a prescription but do have to get it from a clerk because it needs to be refrigerated).
      I hope that you are able to find one that works for you. Just as an FYI, the makers of Align, one of the ones that I mentioned in my post, can no longer guarantee that it is GF.

  24. Saltum

    I enjoyed this website because I found so many comments that I can relate to. I haven’t been officially diagnosed with Celiac disease but I have been diagnosed with IBS. I just changed my diet to Gluten Free and I’m hoping that this will make a difference. I suffer with bouts of diaherrea that can happen all of a sudden. There’s not a lot of pain always but sometimes I’m in a store or out somewhere and it would just come on – I lose total control. The embarrassment and humiliation is too much to take. When I go into a store or restaurant the first thing I look for is a bathroom and then I feel a need to find a table that’s close to the bathroom entrance. It’s horrible horrible horrible!! So now I’m trying gluten free everything. I hope it helps but it sounds like I may benefit from this florogen? What does florogen do exactly?

    1. Jess Post author

      Hi Saltum,
      I am sorry to hear that you are suffering with all of this. Many of us have experienced similar symptoms prior to going GF. Were you officially tested for celiac disease? If you haven’t been, it’s best to have all of the testing done when you are still eating gluten on a regular basis, as the longer that a person has been GF, the less reliable the celiac tests are.
      Many of us with celiac, non-celiac gluten sensitivity, and IBS have an imbalance of bacteria in our digestive systems. We have an overgrowth of “bad” bacteria that can lead to inflammation of the intestines, leaky guts, and other digestive symptoms. By taking probiotics, we add good bacteria to our digestive systems and “reset” our bacterial balance. Florajen 3 contains 3 of the probiotics (good bacteria) that many of us have low levels of.
      I hope this makes sense. Please let me know if you have any questions. And I hope that you start to feel better soon.

  25. Saltum

    This website is so helpfuI. I suffer with IBS but have not been officially diagnosed with Celiac Disease. My problem is that I have terrible bouts of diaherra. It comes on anytime, anywhere and sometimes without a lot of warning. I have been completely humiliated in stores and even once in a restaurant because I had no control. I just started with a gluten free diet which I’m surprised was not suggested to me. I’m hoping that this will make a difference for me. It has changed my life so much in that I can’t make plans with friends to do lunch or things like that. I like going to theatre but I have to have an aisle seat just in case I need to get up quickly to get to the bathroom. It’s crazy, embarrassing and life changing. I’m in such distress over it!!

  26. north korea gi nam

    Long time no see
    I am a young man of 21 years in North Korea.
    1 month Taking folic acid vitamin B12
    The most bioavailable, active form of folate: 5-Methyl-tetrahydrofolate
    The most bioavailable, active form of Vitamin 12:methylcobalamin
    I ate a lot of lactic acid bacteria is still poor health
    yesterday Buying a new probiotic product
    Buy from iHerb
    Product Name:Jarrow Formulas, Ideal Bowel Support, 299v, 30 Capsules
    ingredient: Lactobacillus plantarum 299v

    Product Purchase Plan
    Multivitamin CeliAct Optimizing Nutrition for People with Celiac Disease — 180 Tablets
    Florajen 3three probiotic

    I want to live a wonderful life
    I hope that day comes soon Believe in myself
    So Thank you.
    Jeollanam-do live in korea

    1. Jess Post author

      Hi Jeollanam.
      It is good to hear from you and I hope that your symptoms improve.
      Thank you for writing back to let me know that you were able to find the supplements on Amazon.
      I hope that you start to feel better soon. It seems like you are taking all of the right steps!
      Best wishes.

  27. Ian from Oz

    I am a celiac and have followed a strict gluten free diet for 15+ years. I have had a great deal of success throughout my childhood but upon undertaking a stool test that my doctor wanted me to do to check my overall bowel health, it was discovered that my Bifidobacterium count is 0 and Lactobacilli are at 2. The ideal value is 4 and both my Streptococcus counts and E. coli counts were at this level.

    I took a probiotic containing bifidobacterium lactis and lactobacillus acidophilus for 2 months and then retested. My counts were pretty much the same and the bifidobacterium count was still 0 although my lactobacillus was now 3.

    My celiac panel was very low so I am doing a good job at avoiding gluten, but can’t understand why I have no bifidobacteria. Any thoughts would be most appreciated.

    1. Jess Post author

      Hi Ian,
      I am not familiar with stool tests for probiotic levels so I cannot answer your question.
      It would be interesting to see if the probiotic itself is the problem, ie. if you have an improvement taking another brand that contains bifidobacteria.
      What does your doctor think is going on?

      1. Ian from Oz

        My doctor believes that my low lactobacillus and bifidobacterium counts are a side effect of the gluten free diet. A few years ago I went away to university and my college fed me food which contained gluten (mislabelled by the catering staff as “Gluten Free” (can you believe it?!)) so I avoided it for a long time and instead consumed lollies and prepackaged gluten free cookies for a year. Since then I’ve been feeling a bit crummy but I’m starting to get there.

        Is it important for probiotics to contain lactobacillus as well as bifidobacterium. I can’t seem to find bifidobacterium-only probiotics anywhere and this is what I’m really deficient in.

        1. Jess Post author

          Hi Ian,
          It seems like most probiotics contain lactobacillus. I can only guess that it must be b/c it’s well-studied and probably inexpensive.
          That being said, I was able to find several bifidobacterium-only probiotics on This is one example. Please let me know if you are able to find one that works for you and improves your counts, as this will be important for all of us to know.
          Thank you. I hope you continue to heal and feel better.

  28. Annette

    Hi I just wanted to share my daughters story. She’s had digestive issues since I stopped breastfeeding her at 11 or 12 months of age. Two months ago she started with these awful stomach aches that increased in pain and frequency over two months from 1-2x daily to sometimes 5 or 6) Long story short…. her pedi recommend Florjen Kids meanwhile we got into GI doctor and got answers. Her stomach aches decreased from up to 5x daily to 1 daily to 1 every other day. I got a call about lab results yesterday and she tested positive for Celiac Disease and should be having a scope and biopsy within the week. I’m so grateful to my pedi for recommending the probiotic. Her stomach pains and bowel movements have dramatically improved and she is still not on gluten free diet bc of the biopsy that’s waiting to be done. I am hopeful that the probiotic AND gluten free diet will be the perfect combination to get her 100% feeling great! By the way she is 5 years old.

    1. Jess Post author

      Hi Annette,
      Thanks so much for sharing your experiences. I think it will definitely be helpful for other parents to be able to read about your positive experience with your daughter’s probiotic.
      Since I wrote this I post last year I have started all 4 of my kids on a probiotic as well. It seems like they’ve also had far fewer illnesses (colds, fevers, etc) than in the past since starting.
      I hope that the scope and biopsy go well too. Please know you are welcome to share, comment, ask questions, vent, etc. on here at any time!

  29. Linda Ruth

    DO you have any suggestions regarding probiotics for GF celiacs who have panic attacks?

    1. Jess Post author

      Hi Linda,
      I am not aware of any probiotics that have specific benefits for those of us with panic attacks and/or anxiety. I have been very happy with Florajen 3, which contains bifidobacterium and lactobacillus.
      Perhaps others who read this will be able to suggest other brands for you…

  30. Chris

    Hi Jess, good article and thanks for sharing. I’ve been educating myself for the last 6 months as much as I can on Celiac and gluten sensitivity. I have had stomach issues since I was teen, I’m now 37. About 5 years ago it really came to a head so to speak. Real chronic pain, bloating, and constipation. I gradually got more and more miserable as time went on. I traveled a lot with my job and I began to understand that I must have a food allergy. I’ve seen over 5 gastro’s and none have helped. Either out of ignorance, or just doing a colonoscopy and pushing me out the door saying it’s IBS. I started researching the symptoms and kept coming back to gluten. My family has a long history of autoimmune disorders. My aunt has MS, my mom thyroid issues, cousin and uncle with Crohn’s. I attribute all of this to gluten and leaky gut syndrome.
    I started a gluten free diet about 5 months ago and have felt much better over time. I was on a trip for work when I made up my mind to start the diet. When I got home from the trip I had an appointment to see my Dr. I told him my fear of Celiac and his response was, “I don’t think that’ it”. I honestly wanted to rip his head off because he had never even asked me what my symptoms were. I don’t have much faith in Dr.’s. I’ll be honest. I’ll never go back to that Dr. That’s pretty much been the pattern with the Dr’s I’ve seen. I beg them to please help me find some relief to no avail. Anyway, he did send me to get tested for Celiac and the test came back negative. I told him I had already started the gluten free diet and had been on it for a few weeks. He just was not interested in hearing any of it. I’ve come to the conclusion, through self diagnosis, that I’m gluten intolerant and not Celiac.
    I honestly have not had much of an issue moving into this diet because I was so desperate for relief. I had taken probiotics for a while and never got relief. I understand now that no amount of probiotic would have helped until I stopped ingesting gluten. I’m currently on a gluten free diet and I take an organic, whole-food, multivitamin from garden of life that has a high dose of vitamin D. I try to eat nothing but whole foods along with grass fed beef and free range chicken that has not been injected with steroids and such. I feel much better than I 6 months ago without a doubt. I do still have some bloating and pain occasionally though. I’m not sure if it’s a different food allergy or what. I think that I have an issue with maltodexterin. I say that because I’m a hardcore label reader and that’s one of the few things that I can single out that may be causing me problems. Some things have maltodexterin and don’t bother me though. I don’t know.
    I’m looking to begin taking a probiotic again because I know if anything it’s a good thing for my digestive system. Maybe it will help and give me more relief, hopefully. I don’t if everything is still healing or what. I know what the inflammation feels like. I don’t know if I should try going to the Dr. again to get a true diagnosis. If I do go, I’ve made up my mind that I’m going to the Mayo clinic that specializes in digestive disorders. I’ve been to what are supposed to be the best gastro’s in my state and they just don’t have a clue it seems when it comes to this autoimmune stuff.
    I know this is a lot of info I’ve thrown at this forum. I’ve been reading lot’s of information, lot’s of forums and I have never left a comment. I just have unanswered questions. I’m concerned about my long term health. I feel like the best way to get good info at this point is to share with people that have this in common. Thanks

    1. SP

      I know this post is old, but I wanted to leave a comment for future readers.
      I am a “normal” person, most people I work with don’t know anything is ‘wrong’ with me…but as a former clinician (I no longer work in the hospital – got too sick, now I have an ‘office’ job) if I saw a chart with my medical history…I’d assume I was making it up. No one could possibly have this many issues…but I do and they’re all confirmed. Though I live a pretty normal life and now that I know how to care for myself I no longer look like I am sick all the time. I know my limitations and enjoy life within those limitations.
      I saw Chris’s post about having trouble with her doctor. I want to remind everyone – doctors are just people. Some are great, some try but fall short….and some just suck. I had a MD yell at me once, one confused me with another patient and gave me the wrong Rx, many dismissed me like it was all in my head and one insisted on giving me a mental health referral. One of my multiple degree’s is in phycology… I told him I’d see a psychiatrist as long as someone told me how to feel better, but I didn’t because I finally found a GI who listened. It takes a lot of searching to find a good doctor, who is willing to take the time to listen.
      Some advice – you pay to see the MD, give him/her one 2nd chance. If they need more than one 2nd chance, move on to the next MD. Put in a million times more effort to find a doctor, than you would to find a hair dresser, or a good restaurant. You are worth it and your body needs to feel better than your hair looks. Ask around for people who’ve had good/bad experiences with MD’s. Just like a hair dresser, a referral can be great…though it’s not a guarantee either way as someone out there hates *your* favorite hairdresser. So even if someone had a bad exp, if you want to try that MD and have the money, give it a try. Don’t every have an invasive procedure you aren’t sure of, without taking your med records to another doc for another opinion – it’s worth the extra time and money. However, scopes are pretty routine and don’t usually need a second opinion, albeit expensive, they’re usually safe.
      Suggestion…if you have to have a costly procedure, plan for it early or late in the year. Early, means you meet your out of pocket maximum (usually a few thousand) early in the year and other services are at no out of pocket cost. Late means you’ve met your deductible. Call your insurance company and ask them – it’s not a scam or shady and don’t be embarrassed. Example, I have to have a scope every few yrs, it’s about 10K by the time it’s all done. The insurance allowable is usually about 7K, the out of pocket max is usually about 2-3K. This means I only pay 2-3K – which is a lot but if I plan properly it helps. So I have my scope in Jan, this means my ultrasound for my gall bladder and pancreas issues doesn’t cost me anything out of pocket, neither do all my labs for my thyroid. I don’t work in insurance, but for many years I was searching for help and I needed to find a way to not go broke while finding help. Also, when you sign up for insurance at work, or buy a private plan, do your homework and if you’re struggling to feel better, pay more for a plan that ultimately saves you in medical bills.
      Thyroid issues often result in GI issues, as per my GI and my personal experience. I have gasteroparesis – if you can’t afford the nuclear medicine tests, which also takes 4 hours (wasn’t fun) just change your diet and see if you feel better after two weeks. Soft foods, yogurt, soup, etc. Some gasteroparsis websites out there offer suggestions. Best thing for my GP – soft foods, ground meat, many small meals and slow walks after eating.
      It took 2+ years for my intestines to heal after going 100% gluten free. I struggled for over 2 yrs after going GF before one day I realized I felt better…finally! Be patient.
      I took/take supplements because I still have absorption issues, which I’ve read are common for celiac patients. I take lots of fish oil/krill oil. LOTS – like 5-10 pills a day and I notice when I don’t. Keep fish oil in the fridge once opened….no one told me that for years. I take a multivitamin and magnesium citrate and turmeric. Lots of ‘anti-inflammatory’ things and I eat that way too. Millions of websites out there gives suggestions on ‘anti-inflammatory’ foods.

      Iron…do NOT take iron pills without iron lab tests. Men especially since menses allows women to lose a bit of iron. Iron can KILL if overdone, especially for long periods. Hemochromatosis is a common genetic disorder and unless you have a period you have no way to remove extra iron. If you think you need iron and can’t afford a doctor to order iron labs, you can order labs on line for a fee….or even better – go donate blood. They’ll tell you what your iron levels are and if you’re too low they’ll reject you. Still I’d not take iron pills without a doctor follow you because you need a lab test once you take iron pills for a month or two. You can also just eat a lot of red meat – try to buy grass fed meat. It really is a better option for everyone, but people with Celiac have enough to deal with. Eat a ton of foods high in iron and if you feel better, then you know. You won’t usually absorb more iron than you need (unless you have hemochromatosis). Anemia is said to be common in celiac pts, as is absorption issues in general so celiacs need to eat only ‘good’ foods, avoid sugars and junk food (of course everyone should).

      As for priobiotics, I take Floajen3. I used to take Pearls and didn’t know if they did anything or not, but then I got really sick and ended up with 3 weeks of antibiotics. My asthma/allergy doc suggested Florjen3 (just because the last 14 days I was on a very strong antibiotic and well…it killed my bugs, but there were certainly some ‘collateral damage’ bugs killed as well). It was a few months later before I took his advice and only because I still wasn’t feeling quite right , my period would come (I also have endometriosis) and I’d feel like crap whereas the month before I got sick felt fine – anti inflammatory diet help my endo as well) So I started taking the Florjen3 about a month ago. My period is normal again but I did have a few days of loose stools after taking it. It helped my period symptoms resolve and I used to have terribe constipation during the last half of my cycle and that has resolved as well since Florajen3. The Pearls didn’t have this effect, so I’d like to believe the Florajen3 is better because it resolved my issues. I confirmed with GI, asthma/immunology and internist and all sd there is no harm to taking it. GI sd after taking for a 10 consecutive days, I could take for every other day, or even every 3rd day if I were concerned about the cost, but I’ve been taking every day and think I’ll continue.

  31. Jess Post author

    Hi Chris,
    I am glad that you felt comfortable writing and sharing story.
    A lot of us have went for years and years (in my case decades) before getting a proper diagnosis. Thankfully you seem to have figured it out yourself. Whether you have celiac disease or non-celiac gluten sensitivity (NCGS) you know that you have to live GF for the rest of your life. I personally get so ill from gluten that I know that I would be unable to undergo a gluten challenge. It just took me 3 weeks to feel back to normal after a recent glutening.
    From what I’ve read and from talking to others with celiac disease, it can take quite a while for our guts to finally heal up. I developed several additional food intolerances after going GF, some are slowly improving and others (i.e. soy) have not. I do think a probiotic has helped my overall digestion and played a role in being able to expand my diet a bit more (but I am also dealing with an innate immune system problem, in addition to celiac, called mast cell activation syndrome).
    A few thoughts for you….by the book, GI symptoms from celiac clear up after 6 to 12 months on the GF diet. The most common reason for continued symptoms is accidental gluten ingestion. If you’re being 100% GF (and it sounds like you are being careful), then it may be worthwhile to get a thorough GI evaluation to make sure that something else is not going on. I do know of 2 celiacs who had ongoing symptoms who ended up actually having colon cancer. I actually ended up developing a case of microsopic colitis as few years back as well, so needed to have a formal GI evaluation. Just my two cents. I cannot see how a probiotic would be harmful in any way and I am a big fan of them, as you can probably tell.
    I hope that you continue to feel better and find answers. Like you, I once thought all my symptoms were due to IBS, as that is what my doctor told me….

  32. north korea gi nam

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  33. SUE

    Hi Jess.
    I was diagnosed with Celiac Disease this past June at age 44. My diagnosis was due to a several declining low hemoglobin readings. I think my Mother may have been Celiac also, but passed 9 years ago, suddenly, of internal bleeding!!! Interesting, I know. I was first sent for a colonscopy, which was negative and clear of all bowel related issues. The surgeon suggested being tested for Celiac. I have been doing great adjusting in my new life and live a 100% strict gluten-free diet. I do still have some belly distention. I’m unsure how long it will take for my villous atrophy to heal, but it took 44 years of gluten to damage it….I guess I can’t be too impatient!! I have been thinking of taking a probiotic to get more relief. What relief can I expect? I’m happy I found you!!! Thanks so very much!!


    1. Jess Post author

      Hi Sue,
      It’s nice to meet you. I am happy to learn that you’ve been diagnosed as you are now GF and on the road to healing. I’ve been on a probiotic for at least 2 years and I believe that it’s played a huge difference in my gut healing (and if it hasn’t, then it’s an amazing placebo effect!)
      I do recall having some pretty significant abdominal distension and pain for a few days after starting on Florajen 3, but once my system adjusted to it my digestion did start to improve. The caveat is that I not only have celiac disease but pretty significant IBS due to a secondary problem called mast cell activation syndrome (I did not find this out I had MCAS until after developing several other food intolerances after going GF). I believe that the probiotic has helped my villi to heal from the celiac damage and that it has helped to tame down the overactive mast cells in my gut (from MCAS). As you read more and more about celiac disease, you will see differing some of our stories are, and how untreated celiac disease can really do a number on our bodies. I am pretty sure that my MCAS is likely a result of having a huge delay in my diagnosis with celiac.

  34. Pingback: Symptoms Of Glutening | my gluten free diet

  35. LindsayRN


    Your website is such a gift to the Celiac community. Thank you for keeping it and for providing accurate, helpful information to so many of us!

    I recently began taking a probiotic, Jarrow brand, with bifidio and lactobacillus strains. I tried it for 1 week, but the continued diarrhea/bloating made me stop. Do you think 1 week is too long for these symptoms to persist?

    A bit about me… I am 30. I have been diagnosed for 7 years after a year abroad living in China. I strictly maintain the diet (husband brushes teeth before we kiss, gluten free kitchen, gluten free makeup, etc), but I have been sick now for months! Each morning I am awoken by my bowels and have to rush to the bathroom. I haven’t had a formed stool in months. I have an 18-month-old, and I felt awesome during pregnancy. But since her birth, I think the Celiac Disease has become more problematic.

    We’d love to have more children, but I’m not sure if Celiac Disease is affecting my fertility. I finally got the courage to go back to my GI doctor last week, and she tested lots of vitamin levels (no results yet) and I will have an EGD and colonoscopy.

    I guess my main questions are:
    1) How long should a probiotic make you feel bad before it makes you feel better?
    2) Is formed stool a real possibility for Celiacs? (Crazy question, but all I know in the past year or so is a life of chronic diarrhea as a Celiac.)
    3) Do you have any tips for anxiety/PMS related to Celiac Disease? Beyond the rush to the bathroom each morning and feeling drained from life stress and GI nutrient loss, my main issue with Celiac Disease is ongoing anxiety–especially for the 10 days or so before my period.

    Thanks again for your advice!!


    1. Jess Post author

      Hi Lindsay,
      I am so glad that you wrote and I apologize for the delay in moderating and responding to your questions.
      I can see that you’re an RN, and that explains why you are such a great historian.
      As you probably already know, it sounds like you have fallen into the non responsive celiac disease group, and you are already doing the most important thing, which is to try to figure out why (and have your small bowel biopsy repeated). If you are interested, I just wrote an article on this topic for Gluten-Free Living magazine a few months back. You can find the link here.
      As far as I know, the GI distress after starting a probiotic should only last for a few days. I have had really, really good success with taking 2 Florajen 3 capsules per day (I initially took one, but it was not until I increased to 2/day that all of my IBS symptoms went away).
      Also, yes, it is possible to have formed stools with celiac disease, and as far as I know. Earlier on in my course I spent a lot of time trying to figure out why I continued to have IBS symptoms, even though I was strictly GF, and it ended up that I have an additional diagnosis, in addition to celiac that also causes GI symptoms called mast cell activation syndrome. It was not until I started on treatment for MCAS, plus taking a probiotic and being strictly GF, that my IBS has disappeared (the only time it returns now is after a glutening or a huge histamine load). I wrote about my MCAS journey back in January, and I’ll actually be posting an update on here soon, if time permits.
      I hope that you are able to find answers and that you start to feel better soon. It’s really nice to “meet” you!

    2. Jess Post author

      One more thing, the anxiety before your periods also make me think of MCAS, as I experience the same thing (and prior to my MCAS diagnosis used to chalk it up to celiac too).

    3. SP

      Hi Lindsey,
      Not sure if you’ll see this but I wanted to offer what I have for you or any one else.

      It took me about a week to notice any GI improvement. Though I struggled more with constipation than diarrhea. My diarrhea was mostly predicable after I’d been GF for 2+ yrs. If you’ve been GF for many yrs that is opposite of me. Though during those first 2 yrs of GF it was anyone’s guess if it was a day of constipation or diarrhea. Now I tend to alternate with mostly constipation. Though after a week on Florajen3 I can count on a regular BM daily…sometimes 3 times a day but still not diarrhea.
      When I suffered through diarrhea I would find foods that constipated me and eat them on days I’d leave the house…I also tried a liquid diet to reduce what I had to eliminate… it helped a bit but, obviously not a longer term solution. One tip was baby wipes and Vaseline after diarrhea to prevent irritation. Also, a sitz bath. I used Epsom salt and filled the tub with 2 inches of water, even left my shirt on and sat for 10 min. It was enough to help. Also, during constipation, I’d take an Epsom salt bath with 2 cups of salt for 20 min in warm, not hot, water. I’d sleep like a baby and poop the next morning. I now take magnesium citrate or magnesium glycinate to help prevent constipation and I sleep better.

      I can vouch, I have confirmed Celiac and I have formed stool…hard enough to wonder if there are diamonds in there sometimes! : ) Hang in there.

      Magnesium is said to help anxiety as well, but is the anxiety generalized or form knowing what is coming? If it is generalized I never had that, though when my iron or thyroid were off I did feel – not good – some could describe it as anxiety. Both are cheap and easy to test and that is all I can think of. OH! And Progesterone. Progesterone would make sense if low since you felt great when you were pregnant and bad 10 days before your period, when progesterone falls. Try foods that increase progesterone (google it) …maybe get a day 21 lab drawn? There is also progesterone suppositories but… the didn’t agree with me and were messy.

      Though if it is anxiety knowing what is coming, I’d suggest keep hunting for an answer and try to arm yourself by being prepared. Get up early and make evacuation a part of your planned morning routine. Try to figure out if there is a pattern between eating and how long before evacuation – then eat accordingly. Try to eat the same foods every day for a week…I have gasteroparesis, it isn’t that bad. Food is medicine in this case and isn’t enjoyable anyway when there is a fear of diarrhea, for me anyway. Also, take vitamins to help with what you’re losing and also since celiacs tend to not absorb well.

      As for fertility….I’ve been trying for years, many yeas. Despite RE help, nothing. IVF isn’t something I agree with personally (though great if it is for you) so…I’m still trying but it’s been so long I am not sure what I’d do with a positive test : )….I am happy with the life God has given me. Acceptance is key, I’d also like to win the lottery and have perfect health, but God gave me this life for a reason. Love the life you have and you’ll always be happy. Cherish the child you have and maybe when you’re 99 you’ll look back and realize your child was so much better as an only child for some future reason…there is a reason if you don’t have another child. As someone without any….for the sake of all the childless women in the world, cherish the child you have. Plus you have a good 10 yrs to have another so don’t worry yet.

      Fertility…Here are some things that haven’t worked for me but worked for others:
      Acupuncture – said to help anxiety and menstrual issues too. Cured my tennis elbow!
      Maca Root – a potato from Peru. I took in capsule form. Said to increase progesterone and fertility. Very safe and I did feel “calmer” on it, less temper, happier in general. I stopped because I thought it was giving me false positive on my OPK, it wasn’t….just me.
      CoQ10 – my RE sd this has been said to help egg quality.
      OPK – use the cheap ones. I have every expensive one out there, seriously over $1500 in fertility monitors…none work better than the disposable sticks. I’ve confirmed all my OPK’s with US and day 21 labs many times over the years. The disposable First Response/Clear Blue/etc…work fine.
      Endometriosis – consider if you have this, but it may not matter unless you’re interested in IVF. Though an answer to ‘why’ is priceless sometimes. I have this but it is very mild. I have no pain on my periods other than painful BM on day 1. Light bleeding that lasts 3 days. I’ve been married since HS and my hubby still isn’t sure when I start my period because I have not symptoms…it surprises me if I am not watching it (I try to forget the last half of my cycle, too stressful to wait for it) So I do not fit the endo profile, but the lap confirmed it and the severity of symptoms or even endo lesions doesn’t correlate to fertility or pain. It makes not sense… My RE sd one thought is the endo could be microscopic in the tubes…I had the “dye test”…but even a tiny bit of inflammation in the tubes would prevent conception. Therapeutic levels of Vit C is said to help endo and the one time I conceived was when I was taking high dose vit C – but clearly it didn’t work the way I wanted and hasn’t worked since so… but for a short time, vit c is pretty harmless, but not more than 2 months.
      Leaky Gut – in my millions of hours of searching some people say leaky gut impact fertility, of course people can say and even publish anything. Though “leaky gut” is suggested to be common in celiacs and said to be GI related to fix. Mostly I’ve seen “cures” suggested with probiotic and incredibly healthy eating (organic veggies, little fruit, zero sugar, salmon/fish, grass fed organic meats and diary, etc). This certainly can’t hurt anyone and if it doesn’t help ones fertility, at least that person is doing something healthy.
      Exercise – exercise increases blood flow. Blood flow /circulation is always better.

      Hope this helps someone.

  36. Lindsay

    Thanks for this article. I went gluten free in April 2014 after having some blood work come back “mildly” positive for Celiac. My doctor at that time recommended I go on anxiety medication to treat what he said was IBS. He never even suggested that I try gluten free after the blood work, didn’t recommend any other tests (and this is after making me go dairy free and alcohol week for 2 weeks as a trial!). I refused to do the medication and went head first into gluten free. Felt great for the first 3 months, and then I suspect I was contaminated while eating what I thought was gluten free pizza in Chicago. Within 20 minutes, I was stuck in the bathroom and forced my husband to pull over multiple times on our way home so I could continue to go (Imodium eventually helped). Since then, my body has not been right, despite following the gluten free diet. I was pretty strict with it so it has been disappointing that it’s taken this long to recover. I suspect I may have also been contaminated this past Friday also, as I had a similar experience. At this point, I don’t know how I can eat out again!

    Finally went back to a new doctor yesterday. She does in fact think I have a low case of Celiac or just a high sensitivity to it (between the stomach/bathroom issues, I have also broken out in a rash in various places). She suggested going to a GI and getting the colonoscopy (FINALLY – never thought I would be happy to hear that). She mentioned perhaps it being Colitis also, but I am hoping that isn’t the case. She did also suggest the Florajen3 to start taking. I will start that either tonight or tomorrow morning.

    I am curious about what kind of digestive distress experience you had the first 24-48 hours. Should I expect this? I am excited to start a new process and hopefully get to the end of this all.

    1. Jess Post author

      Hi Lindsay,
      It’s good to hear from you.
      There is a huge learning curve for the GF diet (It’s a lot more difficult to follow than it sounds because of having to be so careful about cross-contamnation). I travel quite a bit and I got “glutened” over and over again during my first 6-12 months of being GF.
      I am very confused by the fact that you were told that you may have “mild” celiac disease, as there really is no such thing…you either have it, or you don’t have it. It sure sounds like you have it, based on your positive tests and symptoms. Also, in addition to a colonoscopy (which is sounds like you’re having done to look for other problems, like colitis), please make sure that your MD orders an endoscopy with small bowel biopsies to look for celiac-induced damage in your small intestine).
      I recall having a ton of bloating and abdominal pain for about 2 days after starting on Florajen 3, but once that disappeared I did notice an improvement in my digestion. Since writing this post last year I have increased to 2 capsules/day and I hardly ever have any IBS symptoms anymore. I hope that it works for you too!
      Good luck and please feel free to ask questions at any time. I usually moderate and reply to comments in a timely manner, but am a bit back-logged right now.

  37. Pingback: Accidental Glutening Celiac Symptoms | my gluten free diet

    1. Jess Post author

      Hi Treana,
      I appreciate that you shared this. You are right that pure barley grass is gluten free, but the major problem is that the barley grass used in herbal therapies may not be 100% pure and is also at risk of cross-contamination during processing. Jane Anderson is a super-sensitive celiac and she writes for and here is her latest summary of barley grass and gluten.
      For the particular probiotic that I wrote about, when I called the manufacturer I was told that they tested down to 25 ppm of gluten, which for me was not low enough to be comfortable with, and they also did not use the R5 Elisa test.

  38. Camille

    Hi there,

    I have just started a probiotic blend ‘The Friendly Trio’ by ‘Enerex’ and was told it is one of the best to take. I was diagnosed with Celiac almost 13 years ago with ‘silent’ symptoms, and the last 7 years I was plagued with horrible migraines and was told they can be a result from Celiac, even if I follow a strict gluten free diet. I tried a product called ‘Recovery’ by Purica, which is supposed to heal ‘leaky gut’ but it made my migraines worse.. I took it for a period of 3 months and then had to stop taking it, even though I was told it would ‘get better’.
    I just started taking the probiotics about 4 days ago and am noticing an increase in the severity of my migraines again and am guessing it has something to do with something in the pills similar to that in
    ‘Recovery’.. I’m not sure. My question is, have you every heard of this happening to anyone? I haven’t changed anything else in my diet aside from the addition of probiotics. I have also had an upset stomach as well during this time.
    Any insight would be greatly appreciated, thanks so much!

    1. Jess Post author

      Hi Camille,
      I personally am not aware of a connection between probiotics and migraines, but it really sounds like you know your body well and that it’s more than a coincidence. I checked the strains in “The Friendly Trio” and they are identical to the ones in the probiotic that I take, Florajen 3.
      I wonder if you are reacting to one of the inactive ingredients? Or if this is some sort of mast cell issue like that others have commented on, as many with mast cell issues pretty severe headaches.

  39. Kaye

    I’ve been trying to do some research through the Internet on probiotics and stumbled across this post. Thank you for writing it!

    I haven’t found the right probiotics for me, there are so many out there that it feels like a game of Russian Roulette. Pick a good one, pick one that may have been damaged due to improper storage, or pick one that might be cross contaminated or just not safe. How frustrating!! I found a page recommending specific probiotic strains to look for, if you have celiacs.

    I had hoped that the RAW Ultra probiotic would be a good option because seems to have many of the recommended strains and it is labeled gluten-free… BUT (there is always a “but” with celiacs, isn’t there?) after reading the reviews other celiacs have reacted to the barley grass (or oat grass) used as a culture base.

    Anyway, I thought you and your readers might find the link helpful, even if I haven’t any recommendations of my own yet.

    Best wishes, and good health!

    1. Jess Post author

      Hi Kaye,
      Thank you so much for taking the time to share the probiotics link.
      One of the main reasons that I started this page was so that we could all help each other out.
      Please keep us updated as to whether or not you find a probiotic that works (or doesn’t work) for you.

  40. Michelle

    I am glad I found this website. After 2 yrs of testing, 3 gastro dr’s later. Having been told African American do not get Celiacs. I have test positive through colonoscopy and blood test. I feel like my insides is fighting a war. I just started on Florigen once a day, my anemia is out of control so I started taking a iron pills, vitamin b-12 and magnesium. I am feeling better but not 100%. I am also on erythromycin 250mg twice a day. I was also told to take L-Glutamine to help heal the intestines. What are your thoughts on this? I just want to feel better…. I drink plenty of water a day to stay hydrated and combat the constipation. I also suffered from SIBO due to constipation. But now I am taking magnesium and Florigen, I have been able to go regular. I know this is a lot but just looking for some help. Thank you

    1. Jess Post author

      Hi Michelle,
      I am sorry to hear that you are still suffering, as it sounds like you are doing everything that you can to try and feel better.
      I know that you don’t want to hear this, but it can take a long time for our bodies to totally heal. Looking back I don’t think that I felt 100% normal until the 2 year mark or so. That being said, if you’ve been strictly GF for 6 months and are still having symptoms (ie. digestive symptoms, anemia not improving, etc), then you need to be evaluated for nonresponsive celiac disease.
      I am not aware of L-Glutamine and Erythromycin being normal treatments for celiac disease. How were you evaluated for and diagnosed with SIBO?

      1. Michelle

        Hi Jess, Thank you for the reply. L-Glutamine is for the healing of the intestines. Erythromycin was prescribed to keep the bacteria levels down. I took the Erythromycin for about 3 weeks and stopped, I did not feel a difference. I was evaluated for SIBO via hydrogen breath test. I started taking florajen 3 about 1 month ago, I am feeling a little better. But a week ago I started to have the same symptoms of SIBO again, I’m wondering if I am setting my self up again for SIBO with taking a probiotic.

      2. SP

        Erythromycin is a common treatment for gasteroparisis. I’ve heard SIBO often slows digestion like Gasteroparisis.

  41. Carlinne

    I was diagnosed with Celiac after my iron and vitamin D tests came back extremely low and I had chronic diahrea. this was 2 years ago. My doctor said just cut out gluten and sent me on my way. Thankfully there are a lot of websites to learn from as that was not the most helpful advice. A year later the diahrea never stopped even though I was gluten free. I went to a naturopath which was the best thing I could have done. I was prescribed probiotics and fermented L Glutamine along with slippery elm as she thought I also had leaky gut. After about a week things got better and a year later all is good. No more diahrea, bloating or pain. I only take the probiotic now. I think everyone with celiac or leaky gut need to find what works for them, it takes time but we all can get there.

  42. Fendell

    I came here looking for probiotic info. I see a lot of complications with Celiac and GF. I did a test called the Cyrex array four which tests for the body’s response to other “gluten free” foods. Gluten cross reactivity. It eliminated more foods from my diet than I could have believed but it was very helpful in that I have a better parameter to go by. Now the whole question of probiotics comes up where they are grown what is in them etc. I have generally done well with a few brands but I can’t really be sure can I? The search continues. Here is a link on further testing

  43. Fendell

    I react to many(too many) on this list. Luckily Chocolate is fine ! “A recent study evaluated the potential cross-reactivity of 24 food antigens. These included:

    Polish Wheat
    Oats (2 different cultivars)
    Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk)
    Coffee (instant, latte, espresso, imported)
    Tapioca (a.k.a. cassava or yucca)

  44. Jeremy


    I was recently tested for celiac and came out with a “weak positive”. I’ve had bloating, gas that began in the spring of 2013, and bowel movement issues for 6 months now. In the summer of 2013 on the recommendation of a relative, I began taking Pearls probiotic. Within an two hours of my first dose, my gas and bloating reduced by 50-80%. However, in early 2014 minor abdominal pain and bm issues began to appear along with a recurrence of bloating. I finally went to a Gastro and was tested for celiac. For a day and a half now I’ve been gluten free and already have seen my abdominal pain reduce dramatically.

    I’ve progressed through the Pearls line from the normal dose to the Elites, which I am now taking daily in lieu of the regular Pearl probiotic. Based on my experience, this particular probiotic has worked well given my experience, in alleviating symptoms of gas and bloating relating to CD, but are not a substitute for a low-gluten or gluten-free diet. It may be that my overall tolerance for my symptoms and continued consumption of gluten has been due in large part to these probiotics.

    Just in the last few days I’ve been learning a lot about CD and ran across this blog, as well as a study done in 2008 on the affects of the Bifidobacterium lactis strain on toxic effects of wheat gliadin, which I found here:

    Interesting given my experience and that Pearls contain this lactis strain of bifidobacterium. This is indeed an area in which additional study of probiotics and CD patients should be performed.

    Thank you for your article and for all the posters who have shared!

  45. David Hammond

    The pH of an empty stomach is 0.8 to 2. The pH rises to 4 to 7 when food is eaten. Probiotic bacteria are more likely to survive past the stomach if they are taken with food.

  46. Megan

    My doctor told me to only take live strains of Probiotics as oppose to pill form. Her area of focus in school was microbiology and she says that if the probiotics are dry, then they are dead. I found a really great source of Lactobacillus. It is called Goodbelly Fermented Coconut Water with Lactobacillus in it. I buy it at Sprouts but it is also for sale at Whole Foods. I had previously done a dose of pill probiotics without noticing a difference and then when I started the Goodbelly I noticed I felt better within a week. 1 eight ounce glass has an entire daily value of Lactobacillus. Just thought I’d share since it was so helpful to me.

  47. Melinda

    HI, Does anyone on here have low ferritin levels because of your Celiac Disease?
    I have to get infusions 5 times a year because of it. Just checking to see if anyone else has this issue.
    Thank you

    1. Renee

      Hi Melinda,

      I was diagnosed in May 2013 and had severely low ferritin levels. I tried taking a supplement and it made me so constipated and dehydrated, I ended up in the hospital. Since then, I have tried to increase my Iron consumption naturally via food (spinach, kale, red meat, etc.). Until recently, I found that anytime I ate a good source of Iron, it was hard to digest. I was becoming more and more hopeless after hearing how great everyone else felt once they went gluten free because I was still feeling tired, bloated, etc. I am about 2.5 years gluten free now, and I still have bad days, but overall, with a positive mind, I am happy.

      I had blood work done a few months ago, about 2 years post diagnosis and I miraculously had normal ferritin levels. I was stunned. I even asked for a second test to make sure it wasn’t a fluke! My dr. attributes these numbers it to my gut successfully healing and being able to now digest the nutrients it needs. I considered transfusions too. Stick with them for now, but eventually, you may not need them because you may be able to digest it on your own once your intestines are progressively healing :) I wish you lots of luck on your journey!

    2. SP

      I have terrible absorption I am told it’s celiac related. It got better as my intestine healed though I still take 56mg daily though. It takes a while to heal and even then absorption is an issue. If you are ever able to take iron pills instead be sure to get your blood iron checked annually and bi-annuaally after menopause.

  48. Connie In MD

    Hi all! I just found this blog this am when I googled probiotic use with CD.
    In response to Melinda (3-26-15), I had years of symptoms prior to diagnosis 2/14. Strict gf diet since. I had unexplained anemia osteopenia n osteoporosis, in spite of taking 1500mg of Calcium and VitD3. I was only 63 yo and no family history of autoimmune or osteoporosis. I took ferrous sulfate 325mg daily for about 6 months. Sooo constipated. Used generic Miralax twice daily to relieve that! It worked very well and it is very safe as it is not the laxative of my Mother’s era.
    My concern is that, having stopped taking iron, my gut feels no better. I have gained the weight back I lost prior to diagnosis of C D with more belly fat

    1. SP

      Just wanted to say, post menopause women need to have iron checked if taking iron.

      For constipation. …try Epsom salt baths 3x a week for constipation or take magnesium citrate or magnesium glycinate daily. Florajen3 also helped my chronic constipation. Prunes are good too.

  49. jubrele

    thank you for your site and for sharing your experience with others. Potentially of concern to those living with celiac, a recent small study raises the concern of gluten contamination in a high number of probiotics.

    “Researchers sampled 22 popular probiotic brands, including 15 that were labeled gluten-free. Half of them contained detectable amounts of gluten, with two brands containing more than 20 parts per million (ppm) of gluten, the threshold set by FDA for gluten-free labeling.”

  50. Lindsay

    Great read! Thanks for sharing your research. I’m celiac with an atypical reaction to gluten- severe constipation. In my experience the combination of a gluten-free diet, probiotic (currently taking Align) and super B complex daily keep my gut feeling happy! :)

  51. Jonathan

    Hi Jess,

    I wanted to see if you are still taking the Florajen 3 probiotic. The reason I ask is because I was taking it for the past six months and recently stopped and am starting to suspect it actually, sadly, contains gluten, even though it claims it is gluten free.

    Columbia University recently did a study on the top 22 best-selling “gluten free” probiotics on the market and found that 55% of them (55%!) contained gluten, and 2 of the 22 brands had over 20 PPM, the legal threshold to be able to call your product gluten free on the label. The problem is that the other 20 brands were just under 20 PPM, so if you are Celiac, and you take more than one a day, you are likely consuming over 20 PPM and glutening yourself. Scary stuff!

    The study unfortunately did not reveal the brands that were tested but I strongly suspect that Florajen 3 is one of them. Over the six months I took Florajen, I started to get more and more anxious and depressed as time went on. In the past, whenever I would get glutened, depression and anxiety were my #1 symptom, as well as brain fog. I never made the connection that it could be the probiotic because it said it was gluten free. But last week I stopped taking it with the advice of my nutritionist who wanted me to take a more powerful probiotic to help heal my gut and solve my multiple food sensitivities. Within two days, I started feeling more energetic, clear-headed, happy, and motivated, and now, a week later, I feel my old self again.

    I can’t imagine that a probiotic would make me feel depressed unless there was gluten in it. Have you experienced any reactions to this particular probiotic over time? I am convinced that Florajen 3 contains small amounts of gluten and it is why I was feeling so down for so long. And that is really unfortunate to know that I have been likely glutening myself all this time.


    1. Jess Post author

      Hi Jonathan,
      Thank you so much for all you have shared. I am sorry that you experienced such a worsening of your health while you were on the probiotic.
      Since the abstract regarding gluten in probiotics was published last spring I have been in touch with the president of American Lifeline, the company that produces Florajen 3. He has shared multiple reports of the product being tested for gluten over the last few years and it consistently tests at less than 5 ppm of gluten. I would be happy to share the reports with you via email if you’d like.

  52. Sarah

    Hi, thanks for the useful article! I noticed this article was posted a few years ago, so I was just wondering if your probiotic recommendation is still the same (Florajen 3), and if it has been useful for you over the years.

    Thanks for all pf the useful info on your site!!

    1. SP

      Hi Sarah, I just started taking Florajen3 about a month ago. I have Celiac and a number of other auto-immune issues mostly GI related. My asthma/allergy/immunology doc suggested Florajen3 and I found it made a difference for me. I used to take Pearl and didn’t notice any change when I started or stopped it. Something changed since Florajen3 – it isn’t a miracle and I also started Magnesium Citrate/Glycinate a few days later but I noticed a dramatic improvement in my GI issues.

  53. Jenn

    There are actually lots of studies that have been done about probiotics and the celiac gut! Google: celiacs small intestine flora scholar, and there is a ton of scholarship and university studies of gut health and celiacs. All the ones I’ve read over the years have concluded that only Lactobacillus Casei has been proven to restore gut health in celiac patients.

  54. Stephanie

    I just came upon this post which I know is from 2013 (3 years ago). I was diagnosed with celiac disease in 2012. I have never taken a probiotic faithfully until a week ago. I came down with a terrible ear infection and chest cold. When the dr prescribed me an antibiotic, she said to make sure I got a probiotic and gave me some recommendations. I know there has been some controversy recently in 2015 about the validity of gluten free claims on probiotics. In a rush I ended up buying Nature’s Way Fortify Women’s Probiotic because it was the only brand that had Gluten Free on the label. I have been taking it for a week and have noticed a dramatic improvement in my digestion! I’m so thankful the dr encouraged me to get a probiotic! I hope the product is actually gluten free as it states, but so far I have not had a bad reaction. It shocks me that gastroenterologists would not recommend probiotics for celiac patients! I believe this has truly helped me.

    1. Jess Post author

      Hi Stephanie,

      Thanks so much for taking the time to share your experience with taking a probiotic.
      GI docs hesitate to recommend probiotics as a treatment for celiac disease, because there has not been enough scientific research to support the use in our population. The good thing is that there is a lot of research being done regarding this right now, and we’ll hopefully have a better idea of which bacterial strains would be of most benefit in celiac disease–I just hope that the price of probiotics doesn’t skyrocket if/when this happens!


  55. LindsayRN

    I commented on here a few years back. I also believe that taking a probiotic has radically changed my symptoms related to Celiac Disease. I take Florastor and cannot recommend it highly enough. Dr. Rudert, my physician, is a GI doc and Celiac Disease specialist, and I had the fortune of attending a talk she gave highlighting various probiotic choices. In the talk, she paired certain probiotics with certain GI symptoms. Florastor was a great match for my symptoms (perpetual loose stools despite strict gluten free diet), but I think it could benefit most people! (Just read the dozens of 5-star reviews on Amazon!!) I now strongly recommend probiotics for ALL Celiacs. I also recommend connecting with Dr. Ruddert ( for more info about matching probiotics with specific Celiac symptoms. (For the record, I am not sponsored or linked financially to either Dr. Ruddert or Florastor. Well, I do pay them both, but it’s not the other way around!! :)

  56. kumar

    Dear madam/sir,
    I am kumar,aged about 56 years and residing in chennai,india.For the past 25 to 30 years I am sufferig from digestive problems such as chronic loss of appetite,indigestion,constipation,malnutrition,falling of mucus from stools,little pus,profuse graying of scalp hair and facial hair.I have undergone endoscopy 5 times and colonoscopy once.I have undergone blood tests and stool tests on several occasions.Only once presence of giardia lamblia was detected in stools.The doctor diagnosid my condition as chronic gastritis,IBS,Non specific proctocolitis,GERD etc.Does giardiasis causes all these myseries?Recently a doctor suggested me to take ornidol,Gnorm capsule and digestal.After taking g norm capsule I have developed serious throat problems and I stopped taking g norm.I am really scared.What is the best probiotic to cure the above problems.Your suggestion will be highly appreciated please.
    With regards,

  57. Beatriz

    Very interesting article. Lots of information. I have celiac disease and just started taking probiotics. When you said you can experience discomfort the first 24 to 48 hours after taking them you mean diarrhea or not only bloating?

  58. Don Richmond

    Jess, I have had the disease dermatitis herpitaformis for about 5 years. When diagnosed I was told I had two choices: Go on a gluten free diet the rest of my life or take a little white pill called “Dapsone”. It was my understanding that I would not have to watch a gluten free diet while on Dapsone. During my last visit to the Dermatologist I asked him if my celiac disease would cause flatulence (excessive gas)? Without an explanation he just told me it would. My question to you is, would a probiotic help this problem. I am 80 years old and take several medications but for the most part, I feel good most of the time. I don’t want to take another pill but if a probiotic would help with the flatulence, I would be willing to take it. Don

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