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

Probiotics Causing Issues?


durrsakja

Recommended Posts

durrsakja Contributor

I have seen a lot of people here try and have good results with probiotic. Has anyone had issues using them? I started taking them a few weeks after diagnosis. I stopped for a few months as I started dealing with hives, a cascade of new food allergies etc. I started again two months ago and my hives immediately got out of control. I had to take several Allegra pills a day to calm them down. I had blood tests done and my white blood cells - EOS % was about double the normal levels.

I stopped the probiotics and the EOS levels came back down to normal. My hives got better as well, but I am still dealing with them along with new food allergies that are popping up every other week. I am starting to think my hives and food allergies got somehow started by me taking probiotics. I have tried different brands, with the latest one being a powder called GUTpro.

Has anyone encountered these issues or has any advice for how I should handle this? Pretty soon I won't have anything left to eat. A rotational diet is not helping much.


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



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

Check for leaky gut.  Or consider what to do if you have it.  Heal it up and then retry foods that bother you.  Also have you tried digestive enzymes?  If you have a lot of damage to the villi you may not be breaking down your food well.  The enzymes help break down your food while the villi heal enough to do their jobs. Their jobs being telling the pancreas to secrete enzymes and absorbing nutrients. This according to my Functional Medicine Nurse.

 

D

durrsakja Contributor

Thank you for replying. I have no doubt I have leaky gut which is why I thought probiotics would help. I am taking l glutamine for it, doing a rotational diet, removed all foods that bother me etc. i tried the digestive enzymes for a few months but I noticed zero difference. I am wondering if I am the only person that had such an adverse reaction to probiotics? Seems a lot of people have been helped by them.

cyclinglady Grand Master

What are the probiotics based on?  Milk?  Soy?  Rice?   You could be reacting to those items.  I'm allergic to milk and the soy based probiotics work fine for me.  You could try rice based if you allergic to milk and to soy.  BioK-Plus is a brand that I used to take and was recommended by my doctor.  It's not cheap and must be refrigerated -- plus it's gluten free.  I used this product when I have to bring out the "big guns" after surgery/antibiotics.  

durrsakja Contributor

The first one was milk based. I switched to a soy based one and then stopped taking them for a while. The last one is milk, corn, soy, rice free so not sure if the base of the probiotic is apt he problem. Could the bacteria itself be harmful?

dilettantesteph Collaborator

Supplements are poorly regulated in this country.  It is probably another ingredient or contamination that is bothering you.  What brand have you used?

durrsakja Contributor

I used a gnc brand initially, then Culturelle. Recently I used GutPro (no fillers).


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



Celiac.com Sponsor (A8-M):



Herreralovv Rookie

Im also in the same situation as you, ive been taking probiotics and its been helping with the over growth of bad bacteria. You have to make sure the pills are gluten-free and doesnt contain milk soy or anything ur sensitive to. The ones im taking are wheat,milk,soy, gluten free.

durrsakja Contributor

Glad to hear they are working for you. I have made sure they are allergen free but I reacted really badly. I am wondering if my hives and food allergies are due to the probiotics.

Herreralovv Rookie

Glad to hear they are working for you. I have made sure they are allergen free but I reacted really badly. I am wondering if my hives and food allergies are due to the probiotics.

When i first started probiotics i was bloating, gassy and i was about to quit taking them because i thought they were harming me. But as i continued taking them, the gassiness went away. I didnt get hives or nothing though

Herreralovv Rookie

Do u kno if u have leaky gut, because leaky gut can somtimes cause other food sensitivies, and wont go away till you are healed.

nutritionguy Rookie

Glad to hear they are working for you. I have made sure they are allergen free but I reacted really badly. I am wondering if my hives and food allergies are due to the probiotics.

Anything is possible, but it seems more likely that you are having an allergic reaction to one or more of the binders, fillers, or other ingredients in the pills containing probiotics that you are taking.  Have you considered getting your probiotics by eating foods that are fermented with probiotic bacteria.   If you have a Whole Foods supermarket near you, you might want to check this out.  On their web site, this is what they state:  

 

Next time you're shopping with us, look for one or more of the following items, many of which are kept refrigerated:

  • Live cultured pickles
  • Live cultured sauerkraut
  • Live cultured kimchee
  • Live pickled veggies
  • Live cultured salsa
  • Unpasteurized miso
  • cheese
  • Assorted beverages such as Synergy drinks and kombucha tea
  • Yogurt with live cultures (not all commercially sold yogurt or frozen yogurt have live cultures)
  • Kefir - a popular cultured dairy drink
  • Probiotic supplements - we have a large selection in our Whole Body Department
Celeste77 Newbie

I had the same issue taking probiotics. I was diagnosed Celiac in March this year but kept getting worse on a gluten free diet. The rashes started about a month before diagnosis and were becoming more frequent after the diagnosis showing up on my wrists, chest, stomach, shins, calves.  After  A LOT of reading, I went to my GI and insisted on a hydrogen breath test; tested positive for small intestinal bacterial overgrowth and it was severe.  I was told to stop all probiotics and I started on antibiotics (Xifaxan), 2 rounds 14 days back to back for a total of 28 days of treatment and it worked!  I found a good Functional Medicine Practitioner who then started me on a crazy dose of probiotics, 225 billion CFU (the drugstore probiotics do not compare to the quality and effectiveness). I do have leaky gut which is obviously from Celiac but also caused by intestinal bacterial overgrowth.  Going gluten-free was only 1 crucial step towards healing.  I found I was reacting to ALL carbs (grains or starchy veggies) & sugars as the bacteria thrive on it.  I also had to stop dairy as it causes inflammation throughout the body. To heal my gut and turn my rock-bottom health around, she prescribed pharmaceutical grade vitamins, minerals, digestive enzymes, probiotics, and a shake supplement to promote intestinal healing.  Its a slow recovery but its working!!

 

I have fired my GI after 3 years of missing celiac disease (5 biopsies and ZERO blood tests), SIBO, unnecessary surgeries, harsh needless medications, all which landed me on my post-diagnosis death bed. I have also fired my primary care physician who missed substantial, severe, and obvious vitamin deficiencies that may have resulted in permanent nerve damage (still unknown if all is reversible). My best advice to you is to find a functional medicine doctor who is a MD who specializes in the many manifestations, complications & hard to treat symptoms of chronic disease. I found mine on FunctionalMedicine.org, you can search by state & city. If I could go back in time, that's what I would have done in the beginning.  So many of our systems rely on the crucial function of our gut so it's hard to say what is going inside of you. Eliminating one food after another assuming allergies is only going to further compromise your health (I was convinced I'd have to live on V8 & water, ridiculous).  Check out the functional medicine site. Google some of the doctors in your area, check out patient reviews so you can find a good doctor & a good match for you. Then get a thorough evaluation so you can start getting better!! :-)

durrsakja Contributor

Thank you all. The probiotics I chose had no fillers, no binders. Just pure probiotics grown on a vegetable culture. The company did not say which one as it is proprietary info. I am assuming I had a direct reaction to them vs the fillers. I did do a breath test and no overgrowth of bacteria. I am stumped as everyone I read about has had such a good response from adding probiotics. I am currently drinking kombucha but have not ventured into other fermented foods yet.

1desperateladysaved Proficient

I had bloating/gas when starting probiotics, but have attributed it to its guar gum contents.  I have a personal inability to tolerate guar gum.  I believe guar gum is a legume.  I can tolerate boiled legumes okay.

 

D

nutritionguy Rookie

But the probiotic you have been taking is a pill--is it not?  And if so, the casing of the pill is made of something other than the probiotic bacteria.  Do you know what the casing of the pill is made of and whether or not this might be a problem?  Do you know the contents of the vegetable culture other than the probiotic bacteria?  If not, this is one of the reasons you might want to consider looking at probiotic bacteria cultured in food you eat, with the ingredients clearly labelled, rather than taking probiotic bacteria in a pill form.

durrsakja Contributor

The latest one I used Is a powder form. It is grown on a vegetable base and free of dairy, soy, corn etc. I picked it due to the claim of it being free of these added ingredients and it was definitely very expensive. I think it is just me having some sort of reaction to the probiotics. I do not know if it has played a reaction into my food allergies as I never had hives or allergies until I started adding probiotics in my diet. My white blood count differential was off as well once I was on them.

nutritionguy Rookie

The latest one I used Is a powder form. It is grown on a vegetable base and free of dairy, soy, corn etc. I picked it due to the claim of it being free of these added ingredients and it was definitely very expensive. I think it is just me having some sort of reaction to the probiotics. I do not know if it has played a reaction into my food allergies as I never had hives or allergies until I started adding probiotics in my diet. My white blood count differential was off as well once I was on them.

You've certainly raised my curiosity level.  Do you feel comfortable indicating the Brand name of this powder?  I am interested in Googling it and seeing exactly what is listed as the vegetable base on which the probiotic bacteria are grown.  If the company does list all of the vegetables in the culture and there are no processed vegetables or other ingredients, I would tend to agree with your conclusion.  If the company has a "secret" vegetable recipe, I would remain a bit skeptical about this powder.  I am always interested in learning new things.

Pegleg84 Collaborator

Have you contacted the company directly since you stared having this rash? It sounds like an allergic reaction, probably to some ingredient in the probiotics, if not necessarily the bacteria cultures themselves. Tell them that you've had an allergic reaction and need to know exactly what's in them so you can figure out what you're reacting to and avoid it in the future.

If you can't figure it out from that, then maybe look into allergy testing to pinpoint what it could be? Also, talking to your doctor to identify the rash might also be a good idea.

Are you feeling better now that you've switched to just the kombucha? If so, it was probably just that brand of probiotics. If not, then it could be something about probiotics that are bothering you.

 

Hope you can figure it out.

  • 1 year later...
anjani Newbie

i read your posts because i too am breaking out in hives after taking probiotics and now have food allergies due to it.  It started 5 months ago.  Never had a problem before that.  i figured out today that it could be from the probiotics that are vegan and free from everything.  Not sure what the source is, it doesn't say.  i'm allergic to all supplemental probiotics.  Switching to a food source instead.  Taking Nettle to relieve the symptoms of hives.  Not sure why i became allergic to probiotics all of a sudden.

durrsakja Contributor

Anjani, for me it turned out to be the trigger for mast cell issues. You can read up more on that on this forum. Search mast cell activation syndrome.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    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

    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.