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 - Culturelle


GFreeMO

Recommended Posts

Gemini Experienced

I am happy to hear your have reduced your need for insulin! I read that diabetics can benefit from supplementing with probiotics some time ago and tried to convince my sister to use them. No go. (She also refuses to be tested for celiac, which is heartbreaking. She is also hypothyroid. But the more I nudge, the more resistance I get.) :(

Maybe I will forward your response to her.

Thanks for telling us about your good response to the probiotics.

I feel like crying right now (from joy for you!!!) :)

Best wishes to you!!

I have never heard of a diabetic requiring less insulin after using probiotics! That is so interesting and like you, Irish, my brother is a Type 1 who I just know has Celiac also. Why? Because his health has always been poor in the way Celiacs suffer before diagnosis. He had bouts of diarrhea so severe, it debilitated him but his doctors claim that's from the diabetes and not Celiac. You know the drill....we can't find it so you don't have it. My brother is as resistant as your sister so I dropped it a while ago and have to accept he will have a much shortened lifespan. He is in really bad shape with all diseases related to Celiac. I am pretty sure if I broach the probiotic news he will scoff at that too! :rolleyes:


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



Celiac.com Sponsor (A8-M):



Diane-in-FL Explorer

Why ARE people so resistant to checking out if they might have Celiac? I have a couple of friends who suffer from Fibro and I have told them about the connection between Celiac and Fibro, and given them links to good sources for info. They say "Oh, that's interesting", but never follow through. I don't get why they wouldn't want to explore the possibility that giving up gluten could help. I have also told several people about B12 deficiency and they won't even ask for the test. I'm not pushy or obnoxious about it either. I guess some people just can't face tthe prospect of giving up their gluteny food. :rolleyes:

missy'smom Collaborator

I have never heard of a diabetic requiring less insulin after using probiotics! That is so interesting and like you, Irish, my brother is a Type 1 who I just know has Celiac also. Why? Because his health has always been poor in the way Celiacs suffer before diagnosis. He had bouts of diarrhea so severe, it debilitated him but his doctors claim that's from the diabetes and not Celiac. You know the drill....we can't find it so you don't have it. My brother is as resistant as your sister so I dropped it a while ago and have to accept he will have a much shortened lifespan. He is in really bad shape with all diseases related to Celiac. I am pretty sure if I broach the probiotic news he will scoff at that too! :rolleyes:

I posted my results on a diabetes forum and not a single response. I imagine there is some scoffing there too.

Inflamation causes an elevation in blood sugar. That's partly why food allergies can raise blood sugar as well. Casein makes my BG jump up a good big notch and not just the meal I consume it in but my whole baseline and all post meal numbers jump up a big notch. I have clear GI inflamation when I ingest my food allergens. My blood sugar is carefully controlled so it's easy to see if something makes a difference. My insulin doses are now still lower since I first reported this. I do still make some insulin of my own so if my pancreas is not using what insulin it has left to manage the blood sugar increase caused my inflamation, then it can use it to help cover my meals, I would imagine. Actually I could just eat more to cover my shots instead of decreasing the dose and that's what some might do, which might distract from the fact that their insulin needs are lower. I might consider increasing my food as well, and upping my insulin once I get a comfortable now stable level and get comfortable with what 1 unit will now cover, which is more than it used to. But I am satisfied with my meals and eat well so I am fine where I am at.

On one level, a shot is a shot and it doesn't matter whether it contains 1 or 3 units but if you get into higher doses, the predictability factor decreases and that can be problematic(at least for some), plus the longer I can maintain what insulin production I have left, that makes fewer shots and easier management. Bottom line though is the probiotic results show healing taking place and that's a very good thing.

One of the D forum members who has the same kind of slow onset T1 I do, was recently dx with celiac disease and reported much easier BG management after only 2 weeks gluten-free.

There's a lot of counterproductive long entrenched stubborneness about Diabetes out there that prevents people/healthcare professionals from embracing some things that do make a difference.

IrishHeart Veteran

Why ARE people so resistant to checking out if they might have Celiac? I have a couple of friends who suffer from Fibro and I have told them about the connection between Celiac and Fibro, and given them links to good sources for info. They say "Oh, that's interesting", but never follow through. I don't get why they wouldn't want to explore the possibility that giving up gluten could help. I have also told several people about B12 deficiency and they won't even ask for the test. I'm not pushy or obnoxious about it either. I guess some people just can't face tthe prospect of giving up their gluteny food. :rolleyes:

That's exactly it in a nutshell, D!

And lack of encouragement from the AMA. Heaven forbid we should actually HEAL people and get them out of misery and out of their offices. No $$$ in that! <_<

The nurse/LMT I see 2X a week who gives me nueromuscular massages and physical therapy to help me get my muscles and strength back? Well, she has dozens of patients who have "FMS" and she asked me to help her convince them to try a gluten-free diet. I wrote up an article explaining how gluten creates inflammation and she gently urges them to try it. Guess what? She told yesterday she is 4/4--all 4 women are reducing their pain in just a few weeks OFF GLUTEN. They are ecstatic!

And when they report this amazing change to their doctors? They are given the eye roll and are scoffed at and told "it's just a coincidence".

<_<

IrishHeart Veteran

One of the D forum members who has the same kind of slow onset T1 I do, was recently dx with celiac disease and reported much easier BG management after only 2 weeks gluten-free.

There's a lot of counterproductive long entrenched stubborneness about Diabetes out there that prevents people/healthcare professionals from embracing some things that do make a difference.

I wish I could introduce you to my sister.

Sadly, she would prefer to follow the doctor's advice and control all of her various AI diseases through medications. She watched me go downhill for 3 years and almost die from celiac disease, yet it is not enough to persuade her to even be tested. I said "At least mention it to your doctor that I have celiac disease, please?" She said "He made a note of it in my chart." :blink:

I have said many times that INFLAMMATION underlies all of this, and sent her articles on AI diseases, specifically diabetes and celiac, but it falls on deaf ears. I am terrified her kidneys will go next. But I do not wear a white coat or have a stethiscope around my neck to give me enough credence. :rolleyes:

And as Diane points out, she is reluctant to adjust enough to give up her gluteny foods. I feel so bad about it and I cry sometimes, thinking, I KNOW she has celiac and I know she would feel so much better off gluten.

But, we can't make anyone see the light. They have to be as sick as we were and pushed to the wall to " get it."

missy'smom Collaborator

I wish I could introduce you to my sister.

Sadly, she would prefer to follow the doctor's advice and control all of her various AI diseases through medications. She watched me go downhill for 3 years and almost die from celiac disease, yet it is not enough to persuade her to even be tested. I said "At least mention it to your doctor that I have celiac disease, please?" She said "He made a note of it in my chart." :blink:

I have said many times that INFLAMMATION underlies all of this, and sent her articles on AI diseases, specifically diabetes and celiac, but it falls on deaf ears. I am terrified her kidneys will go next. But I do not wear a white coat or have a stethiscope around my neck to give me enough credence. :rolleyes:

And as Diane points out, she is reluctant to adjust enough to give up her gluteny foods. I feel so bad about it and I cry sometimes, thinking, I KNOW she has celiac and I know she would feel so much better off gluten.

But, we can't make anyone see the light. They have to be as sick as we were and pushed to the wall to " get it."

I KNOW! I totally hear ya! I have run into the SAME things that have been shared on this thread with my family and docs. My mom's doc said he'd put her on a gluten-free diet the next time she had uncontrollable Diareah. Actually he won't even do that. He said once he "didn't want to do that to her" meaning put her on a gluten-free diet. Oh, OK so you just want to let her die of colon cancer instead! I'd sue his a** off if I could but I can't. I've cried but I can't live in that kind of emotional place so I've moved on. I've gotta take care of me and the next generation.

IrishHeart Veteran

I've cried but I can't live in that kind of emotional place so I've moved on. I've gotta take care of me and the next generation.

I hear ya! But I was hoping that next generation (i.e. my niece and nephews and their little ones) would listen to me.

I have no children of my own (thanks, Celiac :angry: ) and I have a huge extended family --all of whom have various AI diseases and assorted GI issues.

Ah well, you can lead that horse to water...

but you can't hold his head under :)


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



Celiac.com Sponsor (A8-M):



Gemini Experienced

I posted my results on a diabetes forum and not a single response. I imagine there is some scoffing there too.

Inflamation causes an elevation in blood sugar. That's partly why food allergies can raise blood sugar as well. Casein makes my BG jump up a good big notch and not just the meal I consume it in but my whole baseline and all post meal numbers jump up a big notch. I have clear GI inflamation when I ingest my food allergens. My blood sugar is carefully controlled so it's easy to see if something makes a difference. My insulin doses are now still lower since I first reported this. I do still make some insulin of my own so if my pancreas is not using what insulin it has left to manage the blood sugar increase caused my inflamation, then it can use it to help cover my meals, I would imagine. Actually I could just eat more to cover my shots instead of decreasing the dose and that's what some might do, which might distract from the fact that their insulin needs are lower. I might consider increasing my food as well, and upping my insulin once I get a comfortable now stable level and get comfortable with what 1 unit will now cover, which is more than it used to. But I am satisfied with my meals and eat well so I am fine where I am at.

On one level, a shot is a shot and it doesn't matter whether it contains 1 or 3 units but if you get into higher doses, the predictability factor decreases and that can be problematic(at least for some), plus the longer I can maintain what insulin production I have left, that makes fewer shots and easier management. Bottom line though is the probiotic results show healing taking place and that's a very good thing.

One of the D forum members who has the same kind of slow onset T1 I do, was recently dx with celiac disease and reported much easier BG management after only 2 weeks gluten-free.

There's a lot of counterproductive long entrenched stubborneness about Diabetes out there that prevents people/healthcare professionals from embracing some things that do make a difference.

Thank you for your insight on this....it makes perfect sense to me so why a doctor can't figure this out is beyond my understanding. Your last sentence pretty much said it all....we should be wearing T-shirts with this on it! ;)

My brother takes a pill for every problem he has. He's up to about 12 pills a day and his kidneys are a mess. Most likely, he will need a transplant in order to survive. He has 3 sisters and we were told we could not be donors because of our high risk for diabetes. :blink: Of course, big mouth me piped up that I certainly wasn't at high risk for diabetes anymore as I was gluten free and my labs prove how much inflammation there isn't in my body anymore. You can imagine the stereophonic eyerolls I got on that remark! :P

IrishHeart Veteran

Of course, big mouth me piped up that I certainly wasn't at high risk for diabetes anymore as I was gluten free and my labs prove how much inflammation there isn't in my body anymore. You can imagine the stereophonic eyerolls I got on that remark! :P

Same rolling eyeballs I get whenever I even mention WHY a gluten free diet and some probiotics might help someone? :rolleyes:

Why don't they believe us? Simple.

Not enough awareness of how inflammation creates illness. This is why I make it my personal mission to educate the masses!! :)

Converting the gluten intolerants, one person at a time. :lol:

This is why I have been dubbed by those who know me as "She Who Sees Celiacs Everywhere", the Gluten Police, the Gluten Nazi and the Celiac Whisperer. They poke fun, but deep down, they know I am right.

B)

  • 1 year later...
Em314 Explorer

re: OP- I just bought Culturelle "Health & Wellness Immunity Support Formula." Seems like it's pretty much the same as digestive health, except this one has more of the Lactobacillus GG, but doesn't have chicory root extract.

It'll be hard to tell what I can give credit to, because I'm still healing (and at the moment adjusting a couple of variables at once because scientific curiosity has lost to the desire to fix a couple of things as quickly as possible), but I figure it can't hurt. I'd frankly be content even if it just had a placebo effect. :)

Why ARE people so resistant to checking out if they might have Celiac? I have a couple of friends who suffer from Fibro and I have told them about the connection between Celiac and Fibro, and given them links to good sources for info. They say "Oh, that's interesting", but never follow through. I don't get why they wouldn't want to explore the possibility that giving up gluten could help. I have also told several people about B12 deficiency and they won't even ask for the test. I'm not pushy or obnoxious about it either. I guess some people just can't face tthe prospect of giving up their gluteny food. :rolleyes:

It scared the crap out of me when the possibility was brought up- I brought my symptoms to my doctor, consented to the initial blood tests, and knew my symptoms were a very good fit for celiac, but I still didn't want to think it could possibly really be the problem and tried pretty hard to convince myself it couldn't be until I got back the first bloodwork results. And, personally, I *do* tend to face things head-on, so I can only imagine how much worse it must be for people typically cope by avoiding/ignoring. Part of my particular response to the idea of having celiac was thinking it would be more restrictive than it actually is. (Once I got a better handle on how much I could still eat/how doable it would really be, and realized I would in fact *not* be stuck living on food that tasted half as good but cost three times as much as I was used to, I started *hoping* it would be celiac, because it was an explanation, and a solution- but I wasn't a happy camper during the early research-and-anticipate phase.) Denial is a dangerous thing for medical issues like celiac, and really sad with celiac specifically because it's so easily treatable, and IMO the diet restrictions have nothing on the reduced quality of life that symptoms cause, but I do think I can kind of understand the desire for denial, anyway. Mor often than not, I think people avoid what they fear.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.