bacteria

Probiotics and Celiac Disease

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

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

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

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

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

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

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

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

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

4. Probiotics should be taken on an empty stomach.

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

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

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

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

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

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79 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.

  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!
    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!
      Jess

      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!

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

  5. Ellen

    Hi!

    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.
      Jess

  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!
      Jess

  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…
      Jess

  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!
      Jess

    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.
        Jess

  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!
      Jess

  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.
      Jess

      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 (http://pediatrics.aappublications.org/content/124/2/e172.full.pdf+html) the daily dose given to children was 1 billion CFU/day.
      I hope this helps! Questions are welcome at any time…
      Jess

      1. Melissa

        Jess,

        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!
        Melissa

  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. http://en.wikipedia.org/wiki/Butyrate

    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. Kefirlady.com 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!
      Jess

  13. Pingback: Risk Factors for Celiac Disease | The Patient Celiac

  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?

    Thx
    Whitney

    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.
      Jess

  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.
      Jess

    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?
        Jess

        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 (http://www.vsl3.com) 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….
      Jess

  17. Martina

    IF YOU DONT HAVE ENOUGH MONEY YOU CAN BUY TIBICOS OR KEFIR GRAINS AT AMAZON THEY ARE JUST 3 OR 4 DOLLAR. YOU HAVE TO GROW THEM AS INSTRUCTED AND YOU WONT HAVE TO WORRY AGAIN ABOUT BUYING EXPENSIVE PROBIOTICS OR PREBIOTICS.
    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?
      Jess

  18. Martina

    I FORGOT TO MENTION THAT YOU CAN USE ENZYMES TO IMPROVE DIGESTION OF OTHER ALLERGENS (DAIRIES, GLUTEN, YEAST, FATS, ETC) AS WELL AS ALLERGY FIGHTER SUPPLEMENTS

    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.
      Jess

  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!

  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.
      Jess

  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 you.help me T_T

    1. Jess Post author

      Hi,
      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.
      Jess

  22. Bob Miller

    Jess-
    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.
    Bob

    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.
      Jess

  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.
      Jess

  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.
      Jess

  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
    1.vitacost:
    Multivitamin CeliAct Optimizing Nutrition for People with Celiac Disease — 180 Tablets
    2.amazon:
    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.
      Jess

  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?
      Jess

      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 Amazon.com. 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.
          Jess

  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!
      Jess

    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…
      Jess

  29. 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

  30. 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….
    Jess

  31. north korea gi nam

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    Recently found new information.
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  32. 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!!

    Sue

    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.
      Jess

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

  34. LindsayRN

    Jess,

    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!!

    Lindsay

    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!
      Jess

    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).

  35. 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.
      Jess

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

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