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
      131,983
    • Most Online (within 30 mins)
      7,748

    CRae
    Newest Member
    CRae
    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

    • Wheatwacked
      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • 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.