Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

To Buy Vsl #3 Or Not.....

fig girl

By fig girl
in Coping with Celiac Disease

Recommended Posts

fig girl Rookie
fig girl
Posted

Hi,

My Dr. put me on VSL #3 suspecting SIBO back in July and i have been taking it but have read that it may contain small traces of gluten and i believe i'm really sensitive. I've been gluten-free since Jan. 08. The VSL seems to have helped but i can't figure out if it's bothering me. I got a box from the pharmacy right after my Dr. prescribed it (before knowing about the flavored or unflavored) and the ingredients are: Lactic acid bacteria, maltose, natural flavorings, silicon dioxide. I've only been taking 1/2 packet a day - the full packet seemed to bother me so i cut back but i've read it could be just the toxins, etc. leaving my body so maybe i should have stuck with the full packet. The unflavored on the vsl website only lists lactic acid bacteria and corn starch and i called and they didn't seem to know for sure but seemed to be going by the ingredients on the box and said that it looked to be gluten-free.

I just don't want to buy another box when it's glutening me. I'm still figuring out some sensitivities so it's hard to tell what is bothering me. I seemed to do better if i stop taking it for a day or two but i didn't take it yesterday and my stomach bothered me today but i could have been accidentally glutened. I've read some posts on coconut kefir and would like to try that soon or maybe try the next strongest probiotic that is definitely gluten free...which i've read theralac, culturelle, flora-q are gluten free. I believe I was lactose intolerant before going gluten-free but after being gluten-free for a while i tried Breyer's ice cream and it didn't bother me - i think it bothered me a little once or twice after eating ice cream but don't know if it was cc with another food. I know I can eat Lactose Free Breyer's vanilla ice cream and it doesn't bother me. When i don't have anything planned and it's on a weekend i'll try drinking milk without lactaid tablets and then with and see what happens (read this on this wonderful site).

Any ideas on a probiotic to take other than VSL #3? I still get confused and overwhelmed when my stomach will bother me like today and i haven't been journaling my food and can't figure out what it was. Thanks so much for any info!

fig girl

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


YoloGx Rookie
YoloGx
Posted

I am finding Ultimate Flora to be very powerful. Its enterically coated and gluten free. I am using the critical care variety (50 billion). They have different grades. I was using the Now GR-8 before but didn't have the results I wanted even though it was way better than most pro-biotics I'd had.

I have heard good things about Vsl #3 but have never tried it. I hope it doesn't have gluten in it. Like you, I react to trace amounts that are usually deemed safe...

Bea

Link to comment
Share on other sites
fig girl Rookie
fig girl
  • Author
Posted
I am finding Ultimate Flora to be very powerful. Its enterically coated and gluten free. I am using the critical care variety (50 billion). They have different grades. I was using the Now GR-8 before but didn't have the results I wanted even though it was way better than most pro-biotics I'd had.

I have heard good things about Vsl #3 but have never tried it. I hope it doesn't have gluten in it. Like you, I react to trace amounts that are usually deemed safe...

Bea

Thank you so much Bea. I have taken ReLife's gentle cleanse (can't remember the exact name) and the regular cleanse a couple of years ago (before gluten-free). The Health Food store i shop at carries ReLife products so hopefully they have it. I think i'll try it instead of getting more of the VSL #3 - i took some last night and my stomach was rumbly today and i had some joint pain but it could have been cc from gluten. I made coconut chicken with Great value sweetened coconut Sun. night so i don't know if that was it or what. Ugh, gotta start back journaling tomorrow and back to really basic safe eating. Thanks again...i really appreciate your help!! :)

Link to comment
Share on other sites
sickchick Community Regular
sickchick
Posted

I got back on 1 bils cause the Ultimate Flora (30's) I took gave me d and I couldn't leave my apt for a week! HAHAHAHA :lol:

I love Renew Life I have been taking their Probiotics for a year now. I notice the healthier I get over time the less powerful I need! :)

Good luck and hang in there figgirl

Link to comment
Share on other sites
YoloGx Rookie
YoloGx
Posted

Hmm--maybe taking too high a dose of probiotics all of a sudden is why I have had a recurrence of bladder inflammation? I thought maybe it was just a new boyfriend...

However instead of D like you Collette I have gotten constipated!

I took some remedies last night I found on the Net that helped get rid of the pain in my ureter but they gave me a bad headache and left me weak today: apple cider vinegar, baking soda and salt--taken separately in large tumblers of water, about an hour in between each. The salt was the last straw--it left me feeling nauseous.

Thankfully my usual detox stuff (dandelion root and yellow dock etc.) is working with an addition of cleavers, and chapparal well as extra magnesium citrate to counteract the constipation plus help the ph needed by my bladder. Tomorrow I will pick up some uva ursi. Calcium citrate would work for the ph too--but am taking other calcium for now (E-zorb).

So...perhaps I need to take a little less heavy duty probiotic? 50 billion is the highest they have. I went for it since I have had this seemingly intractible fungal/candida overgrowth since I first had antibiotics when I was 4 months old (pneumonia plus sprue after being introduced to gluten plus being exposed to the "Green Run" -- i.e., radiation from experiments of releasing radiation on the local population from Hanford Nuclear Power Plant in Washington State).

Link to comment
Share on other sites
sickchick Community Regular
sickchick
Posted

See when I eat cider vinegar, I get severe die-off too, so in 2001 I took it out of my diet altogether (this was long before I had any idea I had celiac, but was aware of my systemic candida) but I had no idea that the die-off effects were normal... I thought I was having some wacky reactions - avoid what we don't understand, right?? lol ;)

Good girl, taking magnesium stearate, me too, 2 a day 4 me. That is supposed to help the 'relief' process too, right Bea?

So you have been aware of your Celiac issues since you were very young? I was born in 71 so that must have been close to the same time as the experiements? I vaguely remember hearing some stories on the news about some controvery regarding Hanford growing up. B)

I am not sure which is worse D or C??? :lol: You poor thing! How frustrating for you!

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748
    Aventine
    Newest Member
    Aventine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      50 YO Male Recently Diagnosed with Celiac Disease

      By trents · Posted

      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...