Crohn's Disease Forum » Your Story » Can probiotics trigger Crohns?


08-02-2013, 12:10 AM   #1
maile
 
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Can probiotics trigger Crohns?

Hi, I'm new to the forum and have a question. My daughter was having loose stools for about 2 years. When I realized this I gave her homemade Kefir from Kefir grains for 3 days. On day 4, she had a 104 degree fever. She went from one BM to 3-4 BM's per day thereafter and continued having fevers every other week. Mind you, she never had fevers before. To get to the point, she was diagnosed with Crohns disease thereafter. She had ulcers in her large and small intestine. I know that the Kefir triggered her flare without a doubt. After Flagyl, 6MP and a liquid diet (Elecare Jr.), she is much better. As of this time, she is only on 6MP and in remission. Her gastroenterologist wants her to take Align, probiotic. I am deathly afraid to give her any probiotic. I read in an NIH article online, "Setting aside the question of probiotic effectiveness however, is their use absolutely safe? In CD, antigenic stimuli contribute towards maintaining gut inflammation, and any bacteria can become a stimulus." Which I interpret to mean that any bacteria, good or bad, can be thought of by the body as an intruder and cause an inflammatory response....probiotics included. I'm conflicted as to whether I should give my daughter (18 yrs.) Align or any other probiotic.
My question is, has anyone taken a probiotic and thought that it caused a Crohns flare....or...has anyone taken a probiotic and feel that it helped them with Crohns and if so, how can you be sure it's the probiotic and not your other medication? Thank you anyone for your advice. I'm so afraid that if I give my daughter a probiotic, it will trigger another flare.
08-02-2013, 12:19 AM   #2
junkboy64
 
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my gastro doc said that taking a probiotic can sometimes help with remission. ive been taking align for a couple months and have suffered no problems. i dont know if it helps, but i take it every day.
08-02-2013, 12:26 AM   #3
maile
 
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Thanks...maybe I will give Align a try. If it hasn't made your Crohns worse or caused you to have a flare, then I guess it must be okay. I wonder though if some people will react differently to it.
08-02-2013, 05:41 PM   #4
araceli
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Hello. Some people think probiotics don't help, others think they get better with them. I personally think they are good, not because they take inflammation away or that they cure a flare up. I believe that with loose stools you loose good bacteria and probiotics replenish them. Kefir is made with fermented milk, so it can be possible that you daughter got a reaction due to the milk? For some people milk is a trigger. Just my opinion. Hope your daughter feels better soon. Let us know
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08-03-2013, 12:01 AM   #5
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I know that VSL gave me really bad cramps, don't know if it was because it was causing inflammation.
08-03-2013, 02:38 AM   #6
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i was already having an issue when i thought that i would try again to add them back into my regimen of things and it defiantly caused my flare to worsen. took them about a week when i was able to figure out what the problem was coming from and when i stopped things went back to, still not very good, but not as bad as they got on them.
08-03-2013, 02:23 PM   #7
maile
 
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Hi,
Thanks everyone for your replies and advice. My daughter is very lactose intolerant. But I don't think that that in itself caused my daughter's Crohns. I think my daughter was susceptible to Crohns for whatever reason and when she drank the homemade Kefir, it triggered the Crohns....or could she have already had the Crohns and the Kefir put her into a flare? My husband and I, as well as our friends can drink this Kefir without any adverse affects. But when my daughter drank it, almost immediately she started having fevers and explosive diarrhea continuously. About three months later after her colonoscopy and endoscopy, she was diagnosed with Crohns, with ulcers in her small and large intestine. I don't think I'm going to give my daughter Align, as her doctor suggests. I just can't overcome my fear that this might happen again.
Thanks to all for your help.
08-04-2013, 08:51 AM   #8
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DS is on vsl #3 and it has helped him at least some.
His loose green ( fast transit ) bm's stopped.
Granted it is not a miracle worker but it has helped a little especially when he had to take a course of abx . Things didn't go downhill as bad as they have in the past.
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08-04-2013, 10:11 AM   #9
Ihurt
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I guess anything is possible. People all react differently to everything. I have been taking High doses of probiotics for years now. I have to be on a low dose antibiotic to prevent UTI's I get( augmentin), so I have to take the probiotics. I take several different ones. I take one by renew life 100billion counts, I also take acidophilus, and I take culturelle daily. I also added one called floratsor which is suppose to help keep the gut healthy and help prevent diarrhea. I mean I use to drink kefir too but I switched to eating organic yougurt instead. There are so many different theories on whether probiotics help or not. Some people swear by them and others have issues with them. Do you think maybe your daughter was already getting sick and maybe it was just a coincidence she got sick after she rank the kefir? Or maybe it was just the milk in it.
08-04-2013, 12:26 PM   #10
maile
 
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Hi iHurt,
I don't think it's a coincidence. Because even though I thought it was the Kefir the first time that set her off, I tried Kefir one more time after her fevers settled down. And again, immediately she got a high fever after the Kefir. Homemade Kefir from Kefir grains has a multitude of bacteria and yeast, so I've read. My guess is that some strain of bacteria in the Kefir acted as an antigen, and put my daughter into a flare or triggered her Crohns. My guess is that with the introduction of the supposedly good bacteria, her body launched an attack on her own body which caused her inflammation, fevers and ulcers. As the NIH study stated, "it's possible that any bacteria can become a stimulus". However that being said, you have been taking a lot of probiotics without any adverse effects. It worries me though to think of giving her another probiotic.
Thanks for your advice.
08-04-2013, 04:23 PM   #11
Ihurt
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When you say homemade kefir, was the milk pasteurized first before the kefir grains were added? The only reason I ask is because if the milk was not pasteurized, that would be a concern as that could make one very sick, especially a person who has an already fragile gut. Have you ever tried her on capsule probitoics? I know some people who cannot tolerate the yogurt and kefir are able to tolerate the capsule form. Also, you would want to make sure you get a good brand as well. Maybe try her out on a small amount, maybe one with not as many bacterial strains? Just a thought.





Hi iHurt,
I don't think it's a coincidence. Because even though I thought it was the Kefir the first time that set her off, I tried Kefir one more time after her fevers settled down. And again, immediately she got a high fever after the Kefir. Homemade Kefir from Kefir grains has a multitude of bacteria and yeast, so I've read. My guess is that some strain of bacteria in the Kefir acted as an antigen, and put my daughter into a flare or triggered her Crohns. My guess is that with the introduction of the supposedly good bacteria, her body launched an attack on her own body which caused her inflammation, fevers and ulcers. As the NIH study stated, "it's possible that any bacteria can become a stimulus". However that being said, you have been taking a lot of probiotics without any adverse effects. It worries me though to think of giving her another probiotic.
Thanks for your advice.
08-05-2013, 11:31 AM   #12
maile
 
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Hi IHurt,
The milk I used was whole milk from the grocery store, pasteurized. I've never tried the pill form of probiotic. Yesterday I gave my daughter lactose free yogurt that I found in the yogurt section of my local market. I thought I would test it on her to see if she has any bad reaction. She didn't have a reaction. Perhaps I might try the pill from one day. Although I read online that some people could not take Align for very long because of cramping and gas. Thanks for your help.
08-05-2013, 11:45 AM   #13
Ihurt
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Your welcome and good luck..
08-05-2013, 01:57 PM   #14
poing
 
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Kefir is a mixture of bacteria and yeasts. I wonder if the yeasts triggered the flare, rather than the probiotic bacteria.

I don't fully understand why, but I do think that yeasts could be involved in triggering Crohn's. I've got a number of reasons to think I am infected with yeast from the saccharomyces family, but it's pretty difficult to pin this down for definite with the current tests available. What I do know is that I had what looked like oral thrush, I eventually had a slight fever too (this is about one year after original symptoms) and it was after this that I had my first episode of blood in the stool.

Also, I reckon there has to be a reason that anti-Saccharomyces antibodies (ASCA) are a marker of Crohns'.

This is my way of saying that maybe your daughter will be fine with a probiotic that is yeast free. From your perspective, I can see that it's quite a big risk to take, because if this turns out to be wrong, then it would put her into a flare, so I would quite understand if you don't think it's worth the risk.
08-05-2013, 05:05 PM   #15
Ihurt
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This is very interesting. I take a supplement called Florastor which is saccharomyces Bualarrdi which is suppose to be a good yeast that is actually beneficial to the maintaining gut health and keeping Bad yeast like Candida Albicans down. Actually they say Saccharomyces Bualarrdi helps to prevent Diarrhea and Gastroenteritis as well and also can help with getting rid of C-diff infections.







Kefir is a mixture of bacteria and yeasts. I wonder if the yeasts triggered the flare, rather than the probiotic bacteria.

I don't fully understand why, but I do think that yeasts could be involved in triggering Crohn's. I've got a number of reasons to think I am infected with yeast from the saccharomyces family, but it's pretty difficult to pin this down for definite with the current tests available. What I do know is that I had what looked like oral thrush, I eventually had a slight fever too (this is about one year after original symptoms) and it was after this that I had my first episode of blood in the stool.

Also, I reckon there has to be a reason that anti-Saccharomyces antibodies (ASCA) are a marker of Crohns'.

This is my way of saying that maybe your daughter will be fine with a probiotic that is yeast free. From your perspective, I can see that it's quite a big risk to take, because if this turns out to be wrong, then it would put her into a flare, so I would quite understand if you don't think it's worth the risk.
08-05-2013, 08:55 PM   #16
chuck16
 
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My doctor had me try Align - she said it may help with symptoms. I tried it and it was awful!! My symptoms immediately returned. I took it for 5 days and it took over a month for me to feel better again. This happened to me once before prior to being diagnosed, but I didn't think anything of it at the time. I'm sure everyone reacts differently - I now know these are not for me. Hope this helps - it's my first post

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08-05-2013, 09:38 PM   #17
wildbill_52280
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alot can go wrong when making yoru own fermented foods, any kind o bacteria can get in there and grow if you dont know what you are doing. its likely she got some bacteria from it that triggered the attack.

try SCD diet, without the yogurt though.
08-06-2013, 04:26 PM   #18
maile
 
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Hi Poing,
Her prometheus test showed ASCA IgA ELISA and ASCA IgG ELISA normal. But her Anti-OmpC IgA ELISA was 21.5 (normal < 10.9), Anti-CBir1 IgG ELISA 85 (normal < 78.4.), and her Anti-I2 ELISA >3000 (normal <368). What does all this mean? I don't know. But you mentioned ASCA as an inflammatory response to yeast, but her ASCA was in the normal range. So does that mean it was the bacteria that triggered her Crohns and not the yeast?
Also, agorc, thanks for the information on Align. This information was very valuable. It reaffirms my decision not to give my daughter Align as her GI recommended. She's starting college in a couple of weeks, and I can't have her in a flare as she starts her freshman year.
And Wildbill, I think you're right about making your own fermented foods and having bacteria get in there. Although, my husband and I could take it without any adverse effects. My daughter was probably genetically predisposed to getting Crohns perhaps. I will think about the SCD diet. What really helped a lot though is having her completely on an all liquid diet for 3 weeks. I'm not talking about Ensure, but taking a complete amino based powdered liquid formula. In the SCD book, it states that the SCD diet was mimicking this kind of liquid diet....because the amino based liquid formula is absorbed in the small intestine, as the SCD diet attempts to do. During the three weeks that she was on this amino based liquid formula she had no fever. But right after she stopped, her fever came back. But then her 6MP kicked in, and she went into remission. Her CRP and SED rates are now normal, stools sometimes normal. Small capsule test and MR Enterography normal....gained 18 pounds...from 88 lbs. to 106 lbs. in about 8 months. I think the liquid formula allowed my daughter's small and large intestine a chance to rest and recuperate and allowed her to bypass on the steroids also. I think this time at rest allowed her ulcers to heal. Now I just hope that the stresses of college life does not put her into a flare again.
Anyway, thank you all for your good advice....much appreciated!

Last edited by maile; 08-06-2013 at 04:52 PM.
08-07-2013, 04:46 AM   #19
poing
 
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Hi Poing,
Her prometheus test showed ASCA IgA ELISA and ASCA IgG ELISA normal. But her Anti-OmpC IgA ELISA was 21.5 (normal < 10.9), Anti-CBir1 IgG ELISA 85 (normal < 78.4.), and her Anti-I2 ELISA >3000 (normal <368). What does all this mean? I don't know. But you mentioned ASCA as an inflammatory response to yeast, but her ASCA was in the normal range. So does that mean it was the bacteria that triggered her Crohns and not the yeast?
Honest answer, I don't know!

My limited understanding is that ASCA is directed against the glucans component of certain yeasts (presumably saccharomyces cerevisiae although I don't know if there is cross reactivity with other kinds of yeasts), while the other antibodies (Anti-OmpC, Anti-CBir1, Anti-I2) are directed against protein fragments in various bacteria (one is a strain of psuedomonas, another is a strain of E Coli, I think).

I do think these antibodies have a clinical meaning. I think they are some kind of indication about which organisms your daughter's immune system is reacting most strongly against. And they do appear to be all bacteria in her case.

I would add that absense of the antibodies is harder to interpret. I think the secretory antibody system present in the gut is decoupled to a certain extent from the immune system in the rest of the body. So it's still possible to have quite a strong immune reaction against something in the digestive system (and digestive inflammation from it) which doesn't translate into an immune response in the rest of the body.

Perhaps it is only when the infection has reached beyond the gut that it is able to elicit a whole body response. My personal theory is that Crohn's is an infectious process caused by a subtle immune defect that means we can't fight off things that we should otherwise be able to live in harmony with, and that the infectious agents are not identical in every case.

So whether a probiotic helps or hinders would depend on a bunch of things, like whether it's one that is lacking in the gut, or already present in excess quantity and/or in the wrong places. If it's an organism that the patient's immune system has become sensitised to, then it's possible that is the kind of thing that can trigger a flare. We all have such an individual and complicated composition to our gut flora. Probiotics are terribly hit and miss at the moment.
08-07-2013, 01:52 PM   #20
maile
 
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Thanks for your help.
12-16-2014, 08:36 AM   #21
Raina
 
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My doctor had me take Align for a month, and it immediately and severely exacerbated my Crohn's. But, I stuck it out for the 28days, somehow, hoping it would eventually stop exacerbating it and would then start helping. Not for me, I immediately improved the day I stopped taking it (fever gone, diarrhea, headache, cramping, mucosal/bloody BMs gone, etc.).

The thing is, what exacerbates (and, conversely what helps) one person's Crohn's is often the opposite of another's. So, it is sadly trial and error w/foods and supplements for most of us.
12-16-2014, 05:33 PM   #22
maile
 
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I never allowed my daughter to take a probiotic after the Kefir milk concoction. Right now she is only on Pentasa and doing well. Her calprotectin is slightly elevated but her Sed rate and CRP are normal. She's not having any symptoms of Crohns. Her GI doctor recently said that probiotics can be helpful for ulcerative colitis but not helpful for Crohns. Also I recently heard from a friend who took the Kefir concoction too. She said it made her really sick. It gave her bad stomach pains and made her break out into a cold sweat so she immediately stopped taking it.
Anyway, I'm glad that you were able to recover after taking the Align. Align was also prescribed for my daughter by a past GI. I'm glad that I never gave it to her. Perhaps it helps some people, but I think my daughter would have reacted like you did.
12-16-2014, 11:00 PM   #23
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Probably a smart choice on your part, especially since she's doing so much better w/out try in it.
03-04-2018, 07:57 PM   #24
Tinaley2
 
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Hi, I'm new to the forum and have a question. My daughter was having loose stools for about 2 years. When I realized this I gave her homemade Kefir from Kefir grains for 3 days. On day 4, she had a 104 degree fever. She went from one BM to 3-4 BM's per day thereafter and continued having fevers every other week. Mind you, she never had fevers before. To get to the point, she was diagnosed with Crohns disease thereafter. She had ulcers in her large and small intestine. I know that the Kefir triggered her flare without a doubt. After Flagyl, 6MP and a liquid diet (Elecare Jr.), she is much better. As of this time, she is only on 6MP and in remission. Her gastroenterologist wants her to take Align, probiotic. I am deathly afraid to give her any probiotic. I read in an NIH article online, "Setting aside the question of probiotic effectiveness however, is their use absolutely safe? In CD, antigenic stimuli contribute towards maintaining gut inflammation, and any bacteria can become a stimulus." Which I interpret to mean that any bacteria, good or bad, can be thought of by the body as an intruder and cause an inflammatory response....probiotics included. I'm conflicted as to whether I should give my daughter (18 yrs.) Align or any other probiotic.
My question is, has anyone taken a probiotic and thought that it caused a Crohns flare....or...has anyone taken a probiotic and feel that it helped them with Crohns and if so, how can you be sure it's the probiotic and not your other medication? Thank you anyone for your advice. I'm so afraid that if I give my daughter a probiotic, it will trigger another flare.
Hi, when I started to feel terrible in my 30ís I decided to try probiotics and vitamin B12 I noticed that I was getting blood and mucus in my stools. And if I ate whole grains it made it worse, so I went to the ER and told them what I was experiencing. They set me up with a GI and had a colonoscopy and it reveled Crohns Disease 😕 I was perfectly fine before them.... when I meant terrible I was tired, no energy
03-05-2018, 10:40 AM   #25
ronroush7
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Hi, when I started to feel terrible in my 30ís I decided to try probiotics and vitamin B12 I noticed that I was getting blood and mucus in my stools. And if I ate whole grains it made it worse, so I went to the ER and told them what I was experiencing. They set me up with a GI and had a colonoscopy and it reveled Crohns Disease 😕 I was perfectly fine before them.... when I meant terrible I was tired, no energy
I hope you are feeling better soon.
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