Probiotics actually helping us?

[Velma]

So after managing this disease for 20 years as of this month, with flares on and off, I have had a lung doctor tell me that a gluten free diet and taking probiotics will keep my immune system quiet and thus control the disease from the inside of my "gut." But I am wondering if the goal is to keep our immune systems at zero level and quiet.. what will taking probiotics do to our systems.. are they good or bad for people with WG?
One site that I found says that autoimmune disease has three basic ingredients: a genetic predisposition, an environmental trigger, and a leaky gut. As far as I know no research has found a common genetic or environmental trigger in any of us but what about the gut. Could this writer be right? This is he site I found the majority of the information on and I am gonna try it I think. Lord knows we need a key and this gives us some control of a situation that is always unpredictable. https://experiencelife.com/ article/autoimmune-disorders- when-your-body-turns-on-you/

If you have any information or have tried this and it has helped please let me know. I need help with a situation that meds and surgeries are not fixing and it has been a 3 year struggle. Maybe this might be my answer. I am going for another bronch on Monday. The number is close to 30 bronchoscopies over the past 3 years and I am refusing any kind of stent. There has to be a solution.

Thanks, Velma

[Birdie]

taking probiotics will keep my immune system quiet and thus control the disease from the inside of my "gut." But I am wondering if the goal is to keep our immune systems at zero level and quiet.. what will taking probiotics do to our systems.. are they good or bad for people with WG?

If you have any information or have tried this and it has helped please let me know.

From my understanding after much study due to many cases of c-diff infection, probiotics won't hurt anything. Probiotics will help if the flora and fauna in your colon needs a boost. Otherwise you're wasting money since you're already in good shape. Like taking too many vitamins makes expensive urine. Your diet and envrionment, along with many other factors will determine the make-up of your gut flora/fauna. It's an individual thing. It only needs to reach an ecological balance that digests your diet and kills off the bad stuff. If in doubt, I take it. The effect to the immune system is only relevant if you have an infection in your colon, usually too much of one organism and not enough of others. Regaining balance means your immune system doesn't have to fight the infection, it's done by the probiotics returning a balance of flora and fauna.

Activia yogut is the best according to my gastro docs, most of the others don't actually do any good, processing makes many brands inert so they're just candy. When I was in need I got Activia at Costco. Vastly cheaper in bulk than at the grocery store. They told me to eat at least two a day. I also took two different probiotic tablets, one flora and one fauna. A year of this routine let me avoid a fecal transplant, yuk, and finally ended the c-diff infections. Now, whenever I cents a distrubance I go get a bunch of Activia. Balance restored. Digestion restored. And it tastes great too. How do I get paid for the advertising? That's about all I nose...

[mishb]

Many people feel much better with a gluten free diet or by taking probiotics.

One thing to remember, if you are also taking antibiotics is to not take the probiotics and antibiotics together.
I think they need a couple of hours apart or something like that.
Basically, pro and anti don't mix very well together, they are not friends :thumbdn:

[BookNut]

I found out about the probiotics and antibiotic thing just recently. I had been taking antibiotics three times a week - right along with my probiotic pill - effectively canceling out any benefit from the antibiotic. Duh!! Well - better late than never I guess.

Velma - I do NOT have WEgeners - just very hard to treat asthma and sinusitis. My doctor put me on a GRAIN FREE diet. NO grains whatsoever. Also - no processed foods, no dairy and very limited fruit. It was strict for 10 days. then I went to a modified one where I added back dairy. I did not have any bad effects from a little dairy - just cream in my coffee and small amounts of cheese in recipes. I feel so much better that I just do NOT plan to add back grains at all. Her reasoning for the diet was that my constant uses of prednisone had jacked up my sugar levels, and also she believes that wheat aggravates our systems causing inflammation that never goes away, which is where I was. A constant round of infection and severe asthma and shortness of breath. It is early to tell yet - but I have been in good shape for 5 weeks now. I know that seems like a short time, but for me it is huge. I have not been good for more than 2 weeks straight for almost a year.

My doctor recommended the diet based on the Work of Mark Hyman - particularly his book The Blood Sugar Solution. She gave me a document for the 10 day detox part of it. I can probably send it to you via private message if I can figure out how to do it.

I feel so much better without the grains - and I don't find myself constantly feeling hungry. I lost 14 pounds in about 2 weeks, in spite of eaten tons of food. The hardest part is all the cooking. If you do decide to try it out....make vats of soup and freeze them. That is what got me through the 10 days. I could always eat soup if I was tired of meat and veggies. The first three days without wheat are the hardest. You get what is called "the wheat belly flu" - but it passes after a day or so and you will feel better. It is honestly like getting over an addictive substance.

[Debbie C]

Jacquie,I would also like to see a copy of the detox she had you on ,if you are able to post it. It it so good to hear that this program and your rehab is really working for you. Next you be posting on Pete's thread about workout buddies ! Take care and keep up the good work.
I just thought I would mention since we were on the topic,I take a probiotic every day as well as eating yogart pretty much every morning and it has helped my gut issues out a lot, I would give it a try

[Birdie]

It is early to tell yet - but I have been in good shape for 5 weeks now.

That's great, last I recall hearing you were dreading the Euell Gibbons "twigs and nuts" diet.

[BookNut]

That's great, last I recall hearing you were dreading the Euell Gibbons "twigs and nuts" diet.

I have got quite used to old Euell Gibbons and decided to keep him around since I was feeling much better. I have added back a LITTLE dairy, but surprised myself about how easy it has been to do without grains, once I got through the 10 day detox. I also had a flash of insight. One of the few things I test as allergic to is grasses. Grains are grasses. So - it makes sense that cutting them out might improve my breathing. Knock on wood - my persistent asthma has been much improved, I am going down slowly on my prednisone and I feel much better in general.

[BookNut]

Deb,

I do not have a link to it - and could not figure out how to send the pdf via PM here. I will see if I can manage it on FB. If not - you will have to send me your email address so I can send it to you that way.

[Velma]

Thanks everyone.. I am seeing my doc in Cleveland tomorrow for yet another bronch and I will see what he thinks we can do. I have tried the probiotics this week and feel fine.. bowels working a little more often than usual but good to go otherwise. I am definitely cutting back on all breads and pastas and avoiding dairy as much as I can too.. especially when I get to the point where the airway is so closed off again--dairy makes it worse. Anything is worth a shot especially when breathing becomes a job instead of an involuntary action. I have had enough already.. 3 years is long enough.. cure please. lol

[Dirty Don]

No cures...yet...just hope...hang in there.

[Debbie C]

Good luck in CC today, Velma. What dr. do you see there ? Too bad your apt wasn't next week, I will be up there Wed. Let us know what happens.

[Velma]

So I had the apt in CC today and my docs attempted to open up the restricted airway again through bronchoscopy, only to find that the damage done from the metal stent placed by another hospital in another state, had caused so much damage that I have to now wear a silicone stent for at least a year to allow it to heal. I had the metal stent sucessfully removed and tried for several months to go stent free but my sad little body is trying to heal the airway and it is closing it off-to the best of my knowledge- and gathered explanation,. I was closed off and the choice had to be made.. Time to talk to a lawyer. Anyhow my doc said that the probiotics may help the immune situation but what was happening to me was NOT WG related and totally the damage from the metal stent. All labs and examinations and biopsies proved that this is not WG! That makes me happy.. but so mad at the hell I have been through over the past years.. Sad when you trust doctors to fix things and they only make them 100 times worse.

I have decided to do the probiotics every other day or at least twice a week and go gluten free for a while .. who knows I might loose some of this preddy weight and get healthy at the same time. I will keep you posted..

Thanks everyone for the help and caring!

[drz]

So I had the apt in CC today and my docs attempted to open up the restricted airway again through bronchoscopy, only to find that the damage done from the metal stent placed by another hospital in another state, had caused so much damage that I have to now wear a silicone stent for at least a year to allow it to heal. I had the metal stent sucessfully removed and tried for several months to go stent free but my sad little body is trying to heal the airway and it is closing it off-to the best of my knowledge- and gathered explanation,. I was closed off and the choice had to be made.. Time to talk to a lawyer. Anyhow my doc said that the probiotics may help the immune situation but what was happening to me was NOT WG related and totally the damage from the metal stent. All labs and examinations and biopsies proved that this is not WG! That makes me happy.. but so mad at the hell I have been through over the past years.. Sad when you trust doctors to fix things and they only make them 100 times worse.

I have decided to do the probiotics every other day or at least twice a week and go gluten free for a while .. who knows I might loose some of this preddy weight and get healthy at the same time. I will keep you posted..

Thanks everyone for the help and caring!

That sucks but doctors are human and make mistakes. Glad you found out the problem and have a treatment plan in place to correct it. I have a BAHA that wasn't done the best and am looking at possible solutions to make it better.

[Debbie C]

So Velma ,you don't have wg at all ? That's great ! I know what you mean about drs. My mother had back surgery at CC and now she is in Soooo much pain and can't stand up straight and then can't stand for long. She had to have 3 more surgeries which all made things worse. If the drs. can prove that stent caused all your problems ,I would definitely sue. Good luck to you trying the probiotics.