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

Gutpro Or Custom Probiotics - Any Experience From Super Sensitives?


carolynmay

Recommended Posts

carolynmay Apprentice

Dear all,

It sounds like no-one has had any experience with Kirkman probiotics, so I just wondered about two others that I am considering trying.

They are super expensive, so I would really value any experience that other people have.

Has anyone tried Organic 3's GUTpro product?

Or otherwise Custom Probiotics probiotics? I am thinking of trying the D-lactate free formula as I have also had a period of chronic fatigue in the past.

Both companies say the products are "gluten free" although neither can confirm what the bacteria are grown on. Organic 3 is much better about stating that they test to < 5ppm though, whereas Custom Probiotics don't give me answer about this.

Thank you SO much for any replies - it would massively help.

Best wishes, Carolyn


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

I have used Custom Probiotics since my DX. I had virtually no detectable good bacteria in my gut upon testing and I have used the 6- strain blend powder for 18 months. If there were any gluten in it, I'd be very sick by now as I react strongly to trace gluten.

My lifelong D and C has resolved. I am "right as rain".

My entire GI tract burned from my mouth to rectum and I could not swallow or digest anything, or keep it in. I was extremely ill from celiac and malabsorption and these probiotics helped me re-establish good gut flora.

I have spoken to the owner of the company. He is well-versed in celiac (he even sent me some information, which I did not really need, but it was nice of him anyway! :) )

Give him a call and ask to speak to him personally.

GFreeMO Proficient

I have used Custom Probiotics since my DX. I had virtually no detectable good bacteria in my gut upon testing and I have used the 6- strain blend powder for 18 months. If there were any gluten in it, I'd be very sick by now as I react strongly to trace gluten.

My lifelong D and C has resolved. I am "right as rain".

My entire GI tract burned from my mouth to rectum and I could not swallow or digest anything, or keep it in. I was extremely ill from celiac and malabsorption and these probiotics helped me re-establish good gut flora.

I have spoken to the owner of the company. He is well-versed in celiac (he even sent me some information, which I did not really need, but it was nice of him anyway! :) )

Give him a call and ask to speak to him personally.

Hi Sky,

Do you know if these are corn free? Do you have a package that you can look on for me? Things to look for..citric or malic acid or anything dextrose or natural flavors or anything with the word vegetable. Thanks!

What about casein?

I'm on the hunt for one too. Culturelle did me in. Never again will I take those. Corn city!

IrishHeart Veteran

Hi Sky,

Do you know if these are corn free? Do you have a package that you can look on for me? Things to look for..citric or malic acid or anything dextrose or natural flavors or anything with the word vegetable. Thanks!

What about casein?

I'm on the hunt for one too. Culturelle did me in. Never again will I take those. Corn city!

um, MO--it's me IH :)

I specifically asked about Corn and soy in Custom Probiotics back when I was avoiding that, too.

He said "NO corn. No soy."

But, call and speak to him if you wish to be reassured. The 800 number is on the website. He's a nice guy.

GFreeMO Proficient

um, MO--it's me IH :)

I specifically asked about Corn and soy in Custom Probiotics back when I was avoiding that, too.

He said "NO corn. No soy."

But, call and speak to him if you wish to be reassured. The 800 number is on the website. He's a nice guy.

Oh! So sorry Irish!! I thought I was responding to Skylark. I am blaming this on my current status of having my period and glutened and or corned today. Glutened and period = bad bad combo.

Anyway. Thank you! I will give him a call as soon as I can make sense! :):rolleyes:

carolynmay Apprentice

um, MO--it's me IH :)

I specifically asked about Corn and soy in Custom Probiotics back when I was avoiding that, too.

He said "NO corn. No soy."

But, call and speak to him if you wish to be reassured. The 800 number is on the website. He's a nice guy.

Thanks Irish Heart. I did actually try speaking to the owner, but he was very evasive about what level of gluten the probiotics were tested to (he said he didn't know and that he didn't test them himself) and what they were grown on. This was what has made me feel a bit nervous about them, although I would love to find some probiotics that work, so I may try them and hope for the best. It is very reassuring that you have found them to be so helpful - thank you so much for letting me know that.

Best wishes, Carolyn

IrishHeart Veteran

Thanks Irish Heart. I did actually try speaking to the owner, but he was very evasive about what level of gluten the probiotics were tested to (he said he didn't know and that he didn't test them himself) and what they were grown on. This was what has made me feel a bit nervous about them, although I would love to find some probiotics that work, so I may try them and hope for the best. It is very reassuring that you have found them to be so helpful - thank you so much for letting me know that.

Best wishes, Carolyn

???? he said... THAT??

I am stunned. :blink:

All I can speak to is my own experience. I am NOT living in the bathroom --and I did that all my life---and I have "gorgeous BMs" :)

Hon, I do not know what to say to this.

He told me emphatically....no gluten, no corn, no soy.

I have used them all along without issues, honest!!

He was also very ill himself and DEVELOPED these probiotics

to heal his own gut.

But, I do not want you to use them if you are not comfortable.


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



Celiac.com Sponsor (A8-M):



T.H. Community Regular

Hon, I do not know what to say to this.

He told me emphatically....no gluten, no corn, no soy.

I have used them all along without issues, honest!!

He was also very ill himself and DEVELOPED these probiotics

to heal his own gut.

How long ago did you talk to him? Could the company have been sold in the interim? I keep hearing that a lot of good organic companies are being bought up by the bigger conglomerates, like Burt's Bees was. Maybe this one has been sold as well? :-(

carolynmay Apprentice

Hello again - I spoke to him a few weeks ago, and in the same way, he had emailed me saying - no corn, no soya, no gluten. It was only that when I phoned and asked him what level the gluten was tested to, he didn't know and told me to "be brave" and not worry about it!

I expect they are fine - I just would have liked to have a definitive level to which they are tested, or even information on what they are actually grown on, but it sounds like the manufacturer (he is not the manufacturer but essentially the marketer) will not give out this info.

I may indeed "be brave" based on what you have said Irish Heart - it's just a bit nerve-racking when you've had complete villous atrophy which was asymptomatic and the provider can't tell you what level of gluten something is tested to.

Just to check - the law in the US says things have to be tested to 25ppm to be declared "gluten free" doesn't it? Here in the UK it's 20ppm, so just checking.

Best wishes, Carolyn

IrishHeart Veteran

How long ago did you talk to him? Could the company have been sold in the interim? I keep hearing that a lot of good organic companies are being bought up by the bigger conglomerates, like Burt's Bees was. Maybe this one has been sold as well? :-(

Still owned by the same person, as far as I know.

IrishHeart Veteran

Hello again - I spoke to him a few weeks ago, and in the same way, he had emailed me saying - no corn, no soya, no gluten. It was only that when I phoned and asked him what level the gluten was tested to, he didn't know and told me to "be brave" and not worry about it!

I expect they are fine - I just would have liked to have a definitive level to which they are tested, or even information on what they are actually grown on, but it sounds like the manufacturer (he is not the manufacturer but essentially the marketer) will not give out this info.

I may indeed "be brave" based on what you have said Irish Heart - it's just a bit nerve-racking when you've had complete villous atrophy which was asymptomatic and the provider can't tell you what level of gluten something is tested to.

Just to check - the law in the US says things have to be tested to 25ppm to be declared "gluten free" doesn't it? Here in the UK it's 20ppm, so just checking.

Best wishes, Carolyn

It's 20 ppm here too.

Open Original Shared Link

(And it's just as nerve- wracking when you can tell there is gluten in them, believe me---I pay for it for weeks. :rolleyes:

Most everything we do is a bit of Russian roulette, yes?)

But some people are not comfortable with this level either and that is completely understandable, so, everyone needs to decide for themselves what works best.

Carolyn, I am sort of chuckling at him saying "be brave". Not because it's funny (as in he is making fun of us by asking the question about the level of gluten) but because I think he is honestly trying to reassure you.

BUT, if you have any doubts whatsoever, please do not use them.

There are so many other brands out there you can choose from.

Cheers,

IH

carolynmay Apprentice

Hi again - thanks for your reply - yes, I totally agree re it being Russian roulette!

The tricky thing is that I've been trying to find a probiotic which is gluten free, corn free, dairy free, soya free and doesn't contain any prebiotics (FOS, inulin etc) as they never go down well either. So I thought I had triumphed with Custom Probiotics!

Have actually tried the child's dose of the D-lactate free formula both mornings over the last two days and touch wood - no obvious reaction. I would like to think there would be some kind of reaction if it were causing damage (hope so anyway..)

I may also try the GUTpro as they can at least say that they test their powders to 5ppm - and same deal about gluten free, corn free, dairy free and soya free according to the labelling. It's just so blooming expensive - especially when involving having to ask a friend to bring it over for me from the US, bless her!

Thanks again for your replies - it has given me courage to try the CP.

Best wishes, Carolyn

IrishHeart Veteran

Glad to hear it is helping and not causing problems!

I really think if you go slowly, with child's doses--- and ramp up gradually, you will see the benefits and do just fine. :)

PM me if I can help any further.

Cheers,

IH

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,018
    • Most Online (within 30 mins)
      7,748

    Laney71
    Newest Member
    Laney71
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.