Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

A warning about probiotics


AAtroposP71

Recommended Posts

AAtroposP71 Apprentice

I just want to send out a little alert for a select few people thinking about going on probiotics.

The last couple of weeks I had been feeling like I was finally making some progress. I had a little more energy, my brain fog was a bit less thick, I wasn't having as many panic attacks, etc...

Then for whatever reason, I decided to take a single dose of probiotics I had left in the fridge that I had stopped taking a month or two ago. I researched them before I bought them to get the absolute best. I think they were Ultimate Flora something or other. Idk, all I know is that they weren't cheap and had no fillers.

Anyway, starting that night, it felt like whatever balance my body had been starting to achieve was completely disrupted. For the past 3 days or so now, I've barely had the energy to stand up, the brain fog is back full force, the constant feeling of panic returned, and it feels like everything in my gut shut down, like I'm not absorbing anything at all again, and I bloat up much easier. I'm back to square one.

While it may be possible that I picked up a secondary bug or something, my intuition tells me that I threw off my natural balance by taking that stupid thing. Now I'm kind of suspecting I might have a problem with SIBO or something along those lines in addition to celiac. I can't say for sure, but I have an upper endoscopy scheduled in 2 weeks that hopefully will tell me something.

tl;dr: If you seem to be doing alright without probiotics, it may not be advisable to take them. At the very least, you should have tests done to make sure you don't have something like SIBO first before dumping even more bacteria into your gut. That's not to say they don't work or haven't helped in countless cases, but just get tested first for other things and realize they're not for everyone.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ironictruth Proficient
1 hour ago, AAtroposP71 said:

I just want to send out a little alert for a select few people thinking about going on probiotics.

The last couple of weeks I had been feeling like I was finally making some progress. I had a little more energy, my brain fog was a bit less thick, I wasn't having as many panic attacks, etc...

Then for whatever reason, I decided to take a single dose of probiotics I had left in the fridge that I had stopped taking a month or two ago. I researched them before I bought them to get the absolute best. I think they were Ultimate Flora something or other. Idk, all I know is that they weren't cheap and had no fillers.

Anyway, starting that night, it felt like whatever balance my body had been starting to achieve was completely disrupted. For the past 3 days or so now, I've barely had the energy to stand up, the brain fog is back full force, the constant feeling of panic returned, and it feels like everything in my gut shut down, like I'm not absorbing anything at all again, and I bloat up much easier. I'm back to square one.

While it may be possible that I picked up a secondary bug or something, my intuition tells me that I threw off my natural balance by taking that stupid thing. Now I'm kind of suspecting I might have a problem with SIBO or something along those lines in addition to celiac. I can't say for sure, but I have an upper endoscopy scheduled in 2 weeks that hopefully will tell me something.

tl;dr: If you seem to be doing alright without probiotics, it may not be advisable to take them. At the very least, you should have tests done to make sure you don't have something like SIBO first before dumping even more bacteria into your gut. That's not to say they don't work or haven't helped in countless cases, but just get tested first for other things and realize they're not for everyone.

There is a real problem with probiotics labled gluten free having gluten in them. There are some articles on the issue. 

Open Original Shared Link

As a result, I stick with Klaire Labs. Only a smaller dose because I am of the opinion too much of anything is not good. I am SIBO negative. 

AAtroposP71 Apprentice

Fascinating. I can't say I'm surprised. Too bad the researchers didn't release the names of the companies, probably for legal reasons. There should be class action lawsuits flying against these corporate scumbags, especially since so many people with celiac take their supplements with the idea that they're supposed to help, when really they're doing more damage. It's another day, another dishonest dollar for them.

Needless to say, I'm never taking probiotics of any kind again.

artistsl Enthusiast

Very good to know in that 8 of the 20 best selling probiotics claim gluten free yet test positive for gluten. 

squirmingitch Veteran

Eat yogurt.

 

Gemini Experienced

I've had nothing but excellent results with probiotics so for many, they are a good idea. But I had testing done to see what was going on in my gut and I had a need for certain strains.  I do not have SIBO and never had a problem with that.

If someone is doing well without them, then you don't have a need but if you are still having gut problems, they might help.  Eating yogurt is not enough.  It's helpful to add it in but I can't eat yogurt every day........too much dairy.

Awol cast iron stomach Experienced

Since I avoid corn and gluten and potential cc of them which you mention as a potential. I went the route of home water keifer.

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

Has any one has tried the probiotic mentioned in this article?

https://www.celiac.com/articles/24595/1/Bifidobacterium-infantis-NLS-Super-Strain-Reduces-a-Defensin-5-in-Active-Celiac-Disease-Patients/Page1.html

Natron Life Start is available on Amazon.com.  

I am dissatisfied with my current probiotic.  I suspect it may be one of those that's contaminated.  

Just curious if anyone else feels like being a guinea pig and trying NLS with me.

Knitty Kitty?

 

patc Newbie

I happen to be one of those very sensitive to wheat, gluten, soy celiacs. I've tried every Probiotic on the shelves in British Columbia, Canada and after writing to all of their home offices I discovered it was the SOY content that was making me dizzy, memory problems, digestion issues. Some labels listed the soy, some  didn't. Finally I found a probiotic at mercola.com (USA) that had the highest level of probiotic content on the market and no soy - it works. I have no negative reaction whatsoever from them and they get rid of upper GI tract burning as well. Having said that, I also discovered that an overload of the 'bad bacteria' and not enough 'good bacteria' in my whole digestive system was causing a ton of problems for me. I have to do a Parasite Cleanse every few months and stay off most sugar---sugar is the enemy as the bad bacteria feed off it. All Celiacs, check out "parasite cleansing' and do this in depth...stay off most of the sugar you currently intake...then start soy free probiotics. You will feel healthy again

cashs mom Rookie
On 8/25/2017 at 9:48 PM, squirmingitch said:

Eat yogurt.

I guess that's okay if you aren't milk sensitive as so many of us are.

I seem to have a lot of sensitivities to different supplements.  I've had good luck with gluten-free Culturelle. Its the only probiotic I've found that I could tolerate.  I am feeling better since I've been taking it for a few months.

 

Kristyw905 Newbie

I've found probiotics have been helpful for me and my super sensitive gut. I've used Pure Probiotics Allergen Free for several years now which was a product recommended to me by my chiropractor. Along with gluten, I am also allergic to many foods including dairy products, so food is not a good source of probiotics for me.  I find that taking the capsule is easier than finding an ongoing food source (though possibly more expensive). Sometimes I will run out and end up going without taking the probiotic for a while and then I notice a negative impact on my gut. The downside of this product is the need for refrigeration which makes it difficult to take along when you are traveling, especially air travel. Bottom line, probiotics may not be helpful for everyone, but I do believe it can be helpful for some. So I wouldn't rule it out across the board for everyone.  People with food allergies are really smart about reviewing ingredients, so just research the ingredients and reviews about which probiotic you decide to use.

DiSagredoM Newbie

With regards to Culterelle... be wary. I'm new to all of this having been diagnosed via an endoscopy last week.... but the Culterelle chewables I was using have wheat as an ingredient. 

cashs mom Rookie

I always take the gluten free Culturelle.  There are several different formulas of Culturelle.

Ennis-TX Grand Master

I recently got some of walmarts generic brand, as the name brand I was told to use by my doctor contained dairy. The equate brand I picked up I dumped a capsule into my nima to test it and got no gluten smile face on the test. Seems to be working well, bit more regular this week til today (UC flare up different story).

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,214
    • Most Online (within 30 mins)
      7,748

    Grams x 8
    Newest Member
    Grams x 8
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.