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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46 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

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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?

    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!

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