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

Bifidobacterium Experience - Die-Off Or Not?


outofsorts

Recommended Posts

outofsorts Newbie

Hi,

Recently, I experimented with taking a 1 billion CFU probiotic that contains exclusively Bifidobacterium strains (no Acidophilus strains are in this probiotic). Specifically, the particular strains contained in this probiotic are:

-Bifidobacterium longum BB536 (morinaga strain)

-Bifidobacterium bifidum

-Bifidobacterium breve

-Bifidobacterium infantis

I took 1 to 2 "pearls" of this probiotic daily. But I've since stopped - at least temporarily - because within 2 days of starting the probiotic, I experienced marked adverse effects. The bulk of this adverse reaction was concentrated in my head area - I seemed to have peculiar symptoms that can generally be classified under the broad umbrella of "brain fog". I would literally feel as if my head/brain were being "poisoned". Chemical and electrical sensitivities that I've been struggling with for the past few years were intensified. It's pretty hard to describe, actually. Actually, I'm a bit afraid to describe it too well, for fear of what these symptoms may represent. These symptoms weren't exactly new to me, though - they were just (re)aggravations of symptoms that I've been dealing with (to varying degrees) for at least the past few years.

Another adverse symptom I experienced was worsening of my breath odor - especially upon awakening. I also became a little more "constipated" than I have been here recently - I would go longer between bowel movements.

This experience leaves me frustrated and a bit confused. First of all - I've been trying to figure out if this is the much-talked-about "die-off". It is tempting to classify my symptoms as a "die-off" reaction - but I don't want to embrace this concept too quickly, because it's possible that my reaction could be an entirely different thing altogether. Would such a small dose of probiotics cause a quick onset of die-off? How can I determine if this is die-off, or a more straightforward adverse reaction (and a sign that this supplement may not be right for me)?

Funny - when I was taking a probiotic that contains a much larger dose (5 billion CFU) of a mixture of Acidophilus and Bifidobacterium strains - I didn't have nearly the adverse response. Which leads me to my next question - is there something about the Bifidobacterium family of probiotics that leads to more severe "die-off"? Do Acidophilus strains and Bifidobacterium strains balance each other in some way?

Any feedback is appreciated. TIA!


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



Celiac.com Sponsor (A8-M):



icm Apprentice

Is the 'die-off' effect considered a validated concept?

I had 0 bifidobacteria on a recent stool test cdsa.

Took a probiotic w/bifidobacteria in it for 2 months and still the reading was 0.

Did you do a complete digestive stool analysis (cdsa) test?

Newbee Contributor

I read that they have found higher than normal amounts of the bifidobacteria in people with celiac. So some believe that this bacteria actually causes problems and if you want to supplement with a probiotic the only kind you want to have in there is the acidophilus. After reading this I stopped taking a probiotic at all. This combined with the SCD (minus the yogurt they recommend) has made things better for me (although not perfect).

icm Apprentice

I read that they have found higher than normal amounts of the bifidobacteria in people with celiac. So some believe that this bacteria actually causes problems and if you want to supplement with a probiotic the only kind you want to have in there is the acidophilus. After reading this I stopped taking a probiotic at all. This combined with the SCD (minus the yogurt they recommend) has made things better for me (although not perfect).

Can you link me to any of these references that highlight the bad properties of bifidobacteria? I know that foods higher in inulin like chicory when given in large doses are thought to automatically stimulate bifidobacteria to regenerate...

Newbee Contributor

Unfortunately I can not remember where I read this. Interesting to hear about the inulin connection. I ate something twice this week that was high in inulin and have been having digestive issues ever since.

icm Apprentice

Unfortunately I can not remember where I read this. Interesting to hear about the inulin connection. I ate something twice this week that was high in inulin and have been having digestive issues ever since.

A GI specialist I talked with earlier this week told me he's unaware of any real benefits of bifidobacteria. Wheat fiber stimulates growth of bifidobacteria but very few gluten free grain fibers do. He also said to me that one scary aspect of having a high bifido count is that if the gut becomes highly permeable and bifido strains spill into the bloodstream all sorts of auto immune diseases can initiate. Type 1 diabetes often occurs in children and the higher bifido count may explain part of the connection.

It may also tell us why bread eaters often develop other autoimmune issues besides celiac... Interesting. :s

burdee Enthusiast

Hi,

Recently, I experimented with taking a 1 billion CFU probiotic that contains exclusively Bifidobacterium strains (no Acidophilus strains are in this probiotic). Specifically, the particular strains contained in this probiotic are:

-Bifidobacterium longum BB536 (morinaga strain)

-Bifidobacterium bifidum

-Bifidobacterium breve

-Bifidobacterium infantis

I took 1 to 2 "pearls" of this probiotic daily. But I've since stopped - at least temporarily - because within 2 days of starting the probiotic, I experienced marked adverse effects. The bulk of this adverse reaction was concentrated in my head area - I seemed to have peculiar symptoms that can generally be classified under the broad umbrella of "brain fog". I would literally feel as if my head/brain were being "poisoned". Chemical and electrical sensitivities that I've been struggling with for the past few years were intensified. It's pretty hard to describe, actually. Actually, I'm a bit afraid to describe it too well, for fear of what these symptoms may represent. These symptoms weren't exactly new to me, though - they were just (re)aggravations of symptoms that I've been dealing with (to varying degrees) for at least the past few years.

Another adverse symptom I experienced was worsening of my breath odor - especially upon awakening. I also became a little more "constipated" than I have been here recently - I would go longer between bowel movements.

This experience leaves me frustrated and a bit confused. First of all - I've been trying to figure out if this is the much-talked-about "die-off". It is tempting to classify my symptoms as a "die-off" reaction - but I don't want to embrace this concept too quickly, because it's possible that my reaction could be an entirely different thing altogether. Would such a small dose of probiotics cause a quick onset of die-off? How can I determine if this is die-off, or a more straightforward adverse reaction (and a sign that this supplement may not be right for me)?

Funny - when I was taking a probiotic that contains a much larger dose (5 billion CFU) of a mixture of Acidophilus and Bifidobacterium strains - I didn't have nearly the adverse response. Which leads me to my next question - is there something about the Bifidobacterium family of probiotics that leads to more severe "die-off"? Do Acidophilus strains and Bifidobacterium strains balance each other in some way?

Any feedback is appreciated. TIA!

I suspect your symptoms were caused by decreasing your probiotic dose from 5 billion to 1-2 billion viable cells daily. 5 billion isn't that much in terms of good bacteria. I take a probiotic with 50 billion daily and only experience a bit of gas immmediately after taking that.

I don't understand your comment about 'die off'. Were you taking probiotics to treat a yeast (candida) overgrowth? "Die off" is usually associated with yeast infections. However, I treated candida with Nystatin followed by high dose probiotics. I never experience any 'die off' symptoms. I suspect your body had grown accustomed to a higher dose of probiotic, before you reduced that dose. and reacted to a 'deficiency' rather than too much probiotics.


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



Celiac.com Sponsor (A8-M):



Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.