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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    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

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.