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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gutpro Or Custom Probiotics - Any Experience From Super Sensitives?
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13 posts in this topic

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

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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.

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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!

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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.

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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:

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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

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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.

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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? :-(

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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

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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.

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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.

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm265212.htm

(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

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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

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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

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