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
durrsakja
Posted

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
1desperateladysaved
Posted

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
durrsakja
Posted
  • Author

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
cyclinglady
Posted

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
durrsakja
Posted
  • Author

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
dilettantesteph
Posted

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
durrsakja
Posted
  • Author

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
Herreralovv
Posted

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
durrsakja
Posted
  • Author

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
Herreralovv
Posted

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
Herreralovv
Posted

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
nutritionguy
Posted

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
Celeste77
Posted

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
durrsakja
Posted
  • Author

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
1desperateladysaved
Posted

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
nutritionguy
Posted

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
durrsakja
Posted
  • Author

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
nutritionguy
Posted

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
Pegleg84
Posted

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
anjani
Posted

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
durrsakja
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,550
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. 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: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.