Probiotics ? No Thanks..

[Alysia]

Some good info in this article:

https://recoveringkids.com/2017/10/16/probiotics/

[howard]

I just remembered that I was drinking a lot of a specific probiotic drink the Summer I had my first flare-up. I don't even know what to think of this. I'm hoping it was just a coincidence but now I have a reason to just ignore all these gimmickey drinks.

Thanks for sharing

[Alysia]

Another warning against probiotics. Please read

https://www.sciencedaily.com/releases/2018/08/180806095213.htm

[me2]

Thanks for the articles . I find the gut biome to be a very interesting study. It is complex and super important and we are only beginning to understand how it works. I have been dealing with terrible acid reflux for several years. I have suffered a great deal because of reflux. To make it even worse I have an atypical version of reflux that is not well understood and treatments do not work well for.
Just a couple of months ago I was on the verge of getting surgery that is very invasive and life altering. I would not be able to enjoy a simple meal ever again after having the surgery. After surgery I would be on a liquid diet for six weeks. And mush food after that.

Probably due to aspiration of aerosol reflux I developed pneumonia and was in the hospital for a solid week getting IV antibiotics recently. Very early in my hospital stay I noticed that I was not having reflux trouble. This was a great blessing as it is very hard for me to follow my reflux diet in the hospital. It was also hard to believe. I had suffered EVERY day for over a year and now it was like I never had reflux.

After I got out of the hospital (about three weeks ago) I expected reflux to return but it has not. After further thought I realized this was not a big surprise.

During my search for answers to my reflux (trying to avoid surgery) I found a book called The Fast Tract Diet - by Norm Robillard. I found this book to be more helpful than any of the medications I took.
The basic idea of the book is that atypical reflux (also know as LPR) can be improved by a LOW carbohydrate diet. The theory is that a high carb diet feeds bacteria in the small intestine that produce hydrogen and methane . This abundance of gas creates a back pressure that pushes on the valve right above the stomach and forces 'toxic' gas into the airways. The guy that came up with the idea, Norm Robillard, is a microbiologist who figured this out on his own after a brief diet that was low carb and helped HIS LPR. He asked himself "Why did low carb help my reflux?" and this is where his theory came from .

He mentions in the book that SOME people have had reduced symptoms after a course of antibiotics. The antibiotics wipe out the gas causing bacteria. Of course no one can, or should, keep doing antibiotics.

Probably LPR is caused by a number of factors like a poorly functioning lower esophogeal sphincter , poor motility, a distorted, unhealthy micro biome, and who knows what else. Changing the micro biome with diet has helped LOTS of people. There is a great facebook group of people who follow the diet and share experiences.

The reason I talk about all this is to encourage people to keep thinking about their own situation. If I had followed only my doctors advice I would have had surgery by now and likely STILL be suffering - as does happen to some people. After I found the diet was helping me I asked my gastroenterologist "I have been seeing gastroenterologists for over four years. How is it that NO one have ever talked to me about diet?"
His answer "We are not trained in that". It did not seem to bother him that I had suffered SO much and could have been helped by trying a change in diet. He did NOT want to know the name of the book that helped me. He will NOT be telling ANY of his patients about it so they could try it. HE IS NOT TRAINED IN THAT!!

[Alysia]

Thanks for the articles . I find the gut biome to be a very interesting study. It is complex and super important and we are only beginning to understand how it works. I have been dealing with terrible acid reflux for several years. I have suffered a great deal because of reflux. To make it even worse I have an atypical version of reflux that is not well understood and treatments do not work well for.
Just a couple of months ago I was on the verge of getting surgery that is very invasive and life altering. I would not be able to enjoy a simple meal ever again after having the surgery. After surgery I would be on a liquid diet for six weeks. And mush food after that.

Probably due to aspiration of aerosol reflux I developed pneumonia and was in the hospital for a solid week getting IV antibiotics recently. Very early in my hospital stay I noticed that I was not having reflux trouble. This was a great blessing as it is very hard for me to follow my reflux diet in the hospital. It was also hard to believe. I had suffered EVERY day for over a year and now it was like I never had reflux.

After I got out of the hospital (about three weeks ago) I expected reflux to return but it has not. After further thought I realized this was not a big surprise.

During my search for answers to my reflux (trying to avoid surgery) I found a book called The Fast Tract Diet - by Norm Robillard. I found this book to be more helpful than any of the medications I took.
The basic idea of the book is that atypical reflux (also know as LPR) can be improved by a LOW carbohydrate diet. The theory is that a high carb diet feeds bacteria in the small intestine that produce hydrogen and methane . This abundance of gas creates a back pressure that pushes on the valve right above the stomach and forces 'toxic' gas into the airways. The guy that came up with the idea, Norm Robillard, is a microbiologist who figured this out on his own after a brief diet that was low carb and helped HIS LPR. He asked himself "Why did low carb help my reflux?" and this is where his theory came from .

He mentions in the book that SOME people have had reduced symptoms after a course of antibiotics. The antibiotics wipe out the gas causing bacteria. Of course no one can, or should, keep doing antibiotics.

Probably LPR is caused by a number of factors like a poorly functioning lower esophogeal sphincter , poor motility, a distorted, unhealthy micro biome, and who knows what else. Changing the micro biome with diet has helped LOTS of people. There is a great facebook group of people who follow the diet and share experiences.

The reason I talk about all this is to encourage people to keep thinking about their own situation. If I had followed only my doctors advice I would have had surgery by now and likely STILL be suffering - as does happen to some people. After I found the diet was helping me I asked my gastroenterologist "I have been seeing gastroenterologists for over four years. How is it that NO one have ever talked to me about diet?"
His answer "We are not trained in that". It did not seem to bother him that I had suffered SO much and could have been helped by trying a change in diet. He did NOT want to know the name of the book that helped me. He will NOT be telling ANY of his patients about it so they could try it. HE IS NOT TRAINED IN THAT!!

WOW, thank you so much for sharing this amazing story and your findings. I am sorry for the tough time you had and glad you found the right solution before it was too late. Thanks God you are feeling better.

If I understand correctly it was a combination of 2 things which healed you: the low carb diet and the treatment with antibiotics ?

In addition to WG I also suffer from collagenous colitis, and in a weired way the combination of specific nutrition plus antibiotics helps me feel better although I can't make it without budezon (a friend to pred, GI steroid, I take them both).

And... we know too well to NEVER trust any dr. Withought checking as much as we can.

[me2]

Alysia,
Yes, I think it was the combination of antibiotics and low carb. Another possibility is that many months ago I started taking large doses of Vitamin D daily as there was compelling information that it could help with LPR. I may never know which of these things is more to credit but I DO know that I was able to get better without surgery and none of the doctors suggested that.

I do remember you have the collageonous colitis. Thats partly why I told my long story. Not long after you developed it I developed it too as was determined by biopsy. I asked the gastro if it was something that could just go away. He said no. This was months ago and I have had no more bouts of it. I took the budesonide for a while too. I still take budesonide as a sinus rinse some times.
It's certainly possible that I still have the colitis but that it is just quiet. I will take that.

I hope these parts of my story can give some encouragement. I had NO hope that my reflux would do anything but get worse. It went on for a long time and it burned my esophageous and lungs. But I stuck to the best information I could find and now, for some reason, it is as good as gone. I know great things can happen for other people too.

Thanks for taking the time go share your experience and ideas.

[Masha]

Alysia,
Yes, I think it was the combination of antibiotics and low carb. Another possibility is that many months ago I started taking large doses of Vitamin D daily as there was compelling information that it could help with LPR. I may never know which of these things is more to credit but I DO know that I was able to get better without surgery and none of the doctors suggested that.

I do remember you have the collageonous colitis. Thats partly why I told my long story. Not long after you developed it I developed it too as was determined by biopsy. I asked the gastro if it was something that could just go away. He said no. This was months ago and I have had no more bouts of it. I took the budesonide for a while too. I still take budesonide as a sinus rinse some times.
It's certainly possible that I still have the colitis but that it is just quiet. I will take that.

I hope these parts of my story can give some encouragement. I had NO hope that my reflux would do anything but get worse. It went on for a long time and it burned my esophageous and lungs. But I stuck to the best information I could find and now, for some reason, it is as good as gone. I know great things can happen for other people too.

Thanks for taking the time go share your experience and ideas.

This all makes so much sense. I have passed that article on to someone who had major stomach surgery and was told to take probiotics. The article is going to the next doctor’s visit.
As for myself, like many of you, fellow Wegeners patients when we get a flare, we must get on antibiotics. My most recent flare lingered and I was put on a continued dose of antibiotics. Literally, my gut told me I could not handle more probiotics. They were causing as much diarrhea as the antibiotics. So, how to keep the antibiotics in? So simple, two hours after an antibiotic I took a Ginger root capsule. Also, I drank apple juice which is a natural anti diarrhea remedy. These measures combined with careful eating during the duration of the antibiotics got me through WITHOUT touching probiotics. Ultimately, we must listen to what our bodies are telling us.
Masha

[Alysia]

Alysia,
Yes, I think it was the combination of antibiotics and low carb. Another possibility is that many months ago I started taking large doses of Vitamin D daily as there was compelling information that it could help with LPR. I may never know which of these things is more to credit but I DO know that I was able to get better without surgery and none of the doctors suggested that.

I do remember you have the collageonous colitis. Thats partly why I told my long story. Not long after you developed it I developed it too as was determined by biopsy. I asked the gastro if it was something that could just go away. He said no. This was months ago and I have had no more bouts of it. I took the budesonide for a while too. I still take budesonide as a sinus rinse some times.
It's certainly possible that I still have the colitis but that it is just quiet. I will take that.

I hope these parts of my story can give some encouragement. I had NO hope that my reflux would do anything but get worse. It went on for a long time and it burned my esophageous and lungs. But I stuck to the best information I could find and now, for some reason, it is as good as gone. I know great things can happen for other people too.

Thanks for taking the time go share your experience and ideas.

Thank you so much for sharing. I didn't know that you also have collagenous colitis. It is one form of microscopic colitis which is also a rare auto immune disease. I know another weggie who has both WG And microscopic colitis. She developped hers a year before I did. So I wonder if there is any connection between the 2 diseases. The other weggie has WG for more then 20 years, started as a teen. I have WG diagnosed for 10 years soon, but it was smoldering many years before and I suspect that the first episode was when I was 17yo. You are also WG veteran for many many years.
In my colitis group they say that some meds can triger a flare and one of the meds mentioned is omperadex/ losec which I took on higher doses of pred. I am not sure it this was my triger.

I am glad your colitis is quiet now. Be careful not to triger it again with bad food. I know that being tempted for just one peach made me miserable for few days of endless toilet visits so I try not to be tempted.

My nutrition is very limited. Can I ask what is the diet that helped you ?

I didnt notice a difference while taking more or less vitamin D, although I never take mega doses.

[Alysia]

This all makes so much sense. I have passed that article on to someone who had major stomach surgery and was told to take probiotics. The article is going to the next doctor’s visit.
As for myself, like many of you, fellow Wegeners patients when we get a flare, we must get on antibiotics. My most recent flare lingered and I was put on a continued dose of antibiotics. Literally, my gut told me I could not handle more probiotics. They were causing as much diarrhea as the antibiotics. So, how to keep the antibiotics in? So simple, two hours after an antibiotic I took a Ginger root capsule. Also, I drank apple juice which is a natural anti diarrhea remedy. These measures combined with careful eating during the duration of the antibiotics got me through WITHOUT touching probiotics. Ultimately, we must listen to what our bodies are telling us.
Masha

Masha, you can try homemade probiotics. If you google it you can find many suggestions and recipes. I think it will be more friendly, safe and tasty to use.
Like in this link for example
https://www.healthline.com/nutrition/11-super-healthy-probiotic-foods#section11
Just be careful not to eat those which contain too much salt. (Not to hurt your kidneys)

[marta]

I think this is very interesting. I've been a probiotic fan for a long time, however not in the form of pills or supplements. I've only popped probiotic supplements when I've been in Mexico and have felt something Montezuma like coming on.

The way I ingest probiotics is the natural way. I love love love kefir. Plain, unsweetened, yummy, yogurty kefir. It gives me some good calcium (as I'm not a fan of milk) and that way I don't take calcium supplements, it is a natural way to get probiotics and not ones that are manufactured in a factory (or however they make the probiotic pills/supplements), it's credited as one of the factors of the above average longevity of the numerous centurions in the Ural mountains. Another form of natural probiotic consumption is in sprouts. I eat lots of sprouts (radish, sunflower, kale, and more) and the probiotic on them is in the little fuzz that you see between the stem and the new sprout... apparently it's a great way to get your probiotics because it manages to survive through the passage of the entire digestive system, and the most important absorption for health happens to be 'near the end of the line' if you know what I mean. Kefir can't get that far down, nor can pills.

I noticed in the articles that what they're mostly talking about is probiotic supplements, not natural probiotics.
I believe in everything in moderation and probiotics are no exception. I try not to take many pills (of any form) unless they're keep me alive, like Imuran, xarelto, dapsone, etc., but I do believe that the reason probiotics are such a hot commodity and so many manufacturers are trying to get in on the profiteering side of probiotics, is because there is truth to the fact that they are good for us. The trick is to ingest them as mother nature created them (like eating fruit vs drinking fruit juice) and then you're not overdoing it, you're not depending on whoever put the formula together to have done it right, and you're not betting your health on the idea that where they were manufactured was a clean place where mistakes never happen.

That's my two cents and wrong or right, I'm gonna keep eating my probiotics the way nature created them, because they haven't hurt me this far, and I love the taste of the foods they come in.

Hope this post doesn't upset anyone (as I often do, ha ha) and that it throws a different perspective on the idea of probiotics.

Peace y'all.
m

[Alysia]

I think this is very interesting. I've been a probiotic fan for a long time, however not in the form of pills or supplements. I've only popped probiotic supplements when I've been in Mexico and have felt something Montezuma like coming on.

The way I ingest probiotics is the natural way. I love love love kefir. Plain, unsweetened, yummy, yogurty kefir. It gives me some good calcium (as I'm not a fan of milk) and that way I don't take calcium supplements, it is a natural way to get probiotics and not ones that are manufactured in a factory (or however they make the probiotic pills/supplements), it's credited as one of the factors of the above average longevity of the numerous centurions in the Ural mountains. Another form of natural probiotic consumption is in sprouts. I eat lots of sprouts (radish, sunflower, kale, and more) and the probiotic on them is in the little fuzz that you see between the stem and the new sprout... apparently it's a great way to get your probiotics because it manages to survive through the passage of the entire digestive system, and the most important absorption for health happens to be 'near the end of the line' if you know what I mean. Kefir can't get that far down, nor can pills.

I noticed in the articles that what they're mostly talking about is probiotic supplements, not natural probiotics.
I believe in everything in moderation and probiotics are no exception. I try not to take many pills (of any form) unless they're keep me alive, like Imuran, xarelto, dapsone, etc., but I do believe that the reason probiotics are such a hot commodity and so many manufacturers are trying to get in on the profiteering side of probiotics, is because there is truth to the fact that they are good for us. The trick is to ingest them as mother nature created them (like eating fruit vs drinking fruit juice) and then you're not overdoing it, you're not depending on whoever put the formula together to have done it right, and you're not betting your health on the idea that where they were manufactured was a clean place where mistakes never happen.

That's my two cents and wrong or right, I'm gonna keep eating my probiotics the way nature created them, because they haven't hurt me this far, and I love the taste of the foods they come in.

Hope this post doesn't upset anyone (as I often do, ha ha) and that it throws a different perspective on the idea of probiotics.

Peace y'all.
m

How can anyone be upset from what you write, marta ? I love reading your comments. Thank you so much for the input. The articles above talk about probiotics in pills etc. Of course natural probiotics are perfectly ok.

[Alysia]

2 new Israeli researches. I read about them in Hebrew and found it in English as well.

The first one Here : https://www.cell.com/cell/fulltext/S0092-8674(18)31102-4

In short, they have found that for some patients, probiotics are not helpful and that there is a way to diagnose in advance if you have "resistance" to probiotics.

The second research is more severe considering the use of probiotics. They have found that giving probiotics after antibiotics will not help at all to recover the microbiome back to where it was before the antibiotics. It took months to recover. Here: https://www.cell.com/cell/fulltext/S0092-8674(18)31108-5

[me2]

Interesting articles. There is a lot still to learn about the gut biome. I think I mentioned somewhere here about a diet that I have been on for acid reflux. Specifically a type of reflux called LPR
Laryengo Pharengeal Reflux. Oh yes, I did talk about it here. I am still amazed that the diet is so effective for so many people and the entire basis of it is altering the gut microbe population by reducing fermentable carbohydrates.

Part of the discussion includes the caution against using some probiotics as they have PRE biotics with them that can feed the microbes we are trying to reduce (the microbes that produce methane and hydrogen). Perhaps there will some day be doctors whose specialty is microbe health specific to certain illnesses. There are many variables. I wish such a specialty existed now. The information out there right now is quite large with a fair amount of conflicting ideas. Until then I guess we all experiment on ourselves and share our ideas with each other.

In agriculture , which is a passion of mine, the thinking is shifting from feeding base nutrients to the plants (like nitrogen, potassium, phosphorus) to feeding the microbes in the soil. Plants get most of their nutrients from microbes in the soil. In fact, plants produce carbohydrates in their foliage and then transport it back down to the roots where microbes are fed along the surfaces of the roots. Plants are basically farming microbes in the soil.
These microbes then produce a balance of nutrients that the root can absorb. Healthy plants have healthy soil with a healthy growth of microbes. I think we will see a large shift in how we think about people(and their microbes) in the same way. I wish I could write a song about Me And My Microbes- it is a hit waiting to happen.

[vdub]

If someone stands to make a lot of money from their book, pills, or sage advice, then beware..... Money corrupts even the best.

[Lucky]

I think this is very interesting. I've been a probiotic fan for a long time, however not in the form of pills or supplements. I've only popped probiotic supplements when I've been in Mexico and have felt something Montezuma like coming on.

The way I ingest probiotics is the natural way. I love love love kefir. Plain, unsweetened, yummy, yogurty kefir. It gives me some good calcium (as I'm not a fan of milk) and that way I don't take calcium supplements, it is a natural way to get probiotics and not ones that are manufactured in a factory (or however they make the probiotic pills/supplements), it's credited as one of the factors of the above average longevity of the numerous centurions in the Ural mountains. Another form of natural probiotic consumption is in sprouts. I eat lots of sprouts (radish, sunflower, kale, and more) and the probiotic on them is in the little fuzz that you see between the stem and the new sprout... apparently it's a great way to get your probiotics because it manages to survive through the passage of the entire digestive system, and the most important absorption for health happens to be 'near the end of the line' if you know what I mean. Kefir can't get that far down, nor can pills.

I noticed in the articles that what they're mostly talking about is probiotic supplements, not natural probiotics.
I believe in everything in moderation and probiotics are no exception. I try not to take many pills (of any form) unless they're keep me alive, like Imuran, xarelto, dapsone, etc., but I do believe that the reason probiotics are such a hot commodity and so many manufacturers are trying to get in on the profiteering side of probiotics, is because there is truth to the fact that they are good for us. The trick is to ingest them as mother nature created them (like eating fruit vs drinking fruit juice) and then you're not overdoing it, you're not depending on whoever put the formula together to have done it right, and you're not betting your health on the idea that where they were manufactured was a clean place where mistakes never happen.

That's my two cents and wrong or right, I'm gonna keep eating my probiotics the way nature created them, because they haven't hurt me this far, and I love the taste of the foods they come in.

Hope this post doesn't upset anyone (as I often do, ha ha) and that it throws a different perspective on the idea of probiotics.

Peace y'all.
m

marta,
I would just like to add support for your discussion. I too have found good results with getting my gut working correctly.
In the past, I haven't replied to posts related to the natural way of doing things as they always seem to be swamped by replies of negativity or derision, however since my initial introductory post over 3 years ago now, I have been through the wringer like many others here and I almost died in June last year.
Luckily for me I hadn't stopped researching since my diagnosis. I couldn't help believing that there must be a cause or causes that continue to aggravate the wegeners.
I don't agree with the idea from the doctors, that the immune system is attacking itself and needs to be suppressed.
My belief is that the immune system is in fact faulty in some way and needs to strengthened or repaired.
I got to a stage where I couldn't get from the bedroom to the lounge room and told the doctors that I would rather be in my own mind rather than in a drug induced haze, if I was going to die within a short time anyway.
The doctors told me that it was strange that I wasnt needing kidney dialysis like others in my situation. I took this as confirmation that my diagnosis of my situation and what I was doing to improve things was correct and was working or at least starting to work.
I wont bore everyone with the long and slow process I went through to reach my direction, however, suffice to say that after using initially, a process of elimination regarding inflamatory foods, and then a change in nutrition I told the doctors that I was going off treatment altogether.
The short story was to get my gut working correctly so it could process the nutrients I added to correctly to heal itself. This obviously included pro-biotics, including initially, sour kraut, milk kiefer and finally water kiefer.
Once my gut was working correctly the improvement has been continuous since then. I have been on no medications since August last year and although not able to work full time, now lead a fairly productive life around our small property.
Dont under estimate the detrimental effects sugar can have on your system.

(very) Lucky

[Alysia]

marta,
I would just like to add support for your discussion. I too have found good results with getting my gut working correctly.
In the past, I haven't replied to posts related to the natural way of doing things as they always seem to be swamped by replies of negativity or derision, however since my initial introductory post over 3 years ago now, I have been through the wringer like many others here and I almost died in June last year.
Luckily for me I hadn't stopped researching since my diagnosis. I couldn't help believing that there must be a cause or causes that continue to aggravate the wegeners.
I don't agree with the idea from the doctors, that the immune system is attacking itself and needs to be suppressed.
My belief is that the immune system is in fact faulty in some way and needs to strengthened or repaired.
I got to a stage where I couldn't get from the bedroom to the lounge room and told the doctors that I would rather be in my own mind rather than in a drug induced haze, if I was going to die within a short time anyway.
The doctors told me that it was strange that I wasnt needing kidney dialysis like others in my situation. I took this as confirmation that my diagnosis of my situation and what I was doing to improve things was correct and was working or at least starting to work.
I wont bore everyone with the long and slow process I went through to reach my direction, however, suffice to say that after using initially, a process of elimination regarding inflamatory foods, and then a change in nutrition I told the doctors that I was going off treatment altogether.
The short story was to get my gut working correctly so it could process the nutrients I added to correctly to heal itself. This obviously included pro-biotics, including initially, sour kraut, milk kiefer and finally water kiefer.
Once my gut was working correctly the improvement has been continuous since then. I have been on no medications since August last year and although not able to work full time, now lead a fairly productive life around our small property.
Dont under estimate the detrimental effects sugar can have on your system.

(very) Lucky

Thank you for sharing, Lucky.

Indeed, being without wg meds might cost life. I know couple of weggies who were without meds for few years because they were in remission. But then, the wg returned.

So please keep an eye on your symptoms, especially check your creatinine every month. How much is it now ?

As for the gut working correctly: my gut is crazy, I also suffer from collagenous colitis. I can't eat many foods which are considered to be healthy for the gut.

Can you please tell us more about your nutrition ? Also, I agree that sugar is evil. What do you avoid ? Its obvious to avoid cookies etc. (Hard to avoid chocolate) but, what about bread ? (When my stomach is totally crazy, all I can eat is bread and eggs) Do you avoid all fruits ? How do you get enough vitamins ? Do you take any supplements ?

Thank you.

[Lucky]

Hi Alysia,
I agree, being without meds might cost life, especially if you have done nothing to repair or improve your immune system.

To answer your questions, my creatinine was over 140 when I was on methotrexate and since my dietary changes and getting off the drugs its in now in the low 120s. I have also been on cyclaphosphamide and azathioprine.
I don't eat any white bread at all. If I do have bread I have a grain bread. Anything that is white and wheat derived has basically anything any good processed out of it. Hence no processed foods.

I would recommend reading books by four people.
Joel Wallach, he has a veterinary background and specializes in mineral deficiencies. Weston Price, a dentist has been called "Isaac newton of nutrition" Lynas Pauling who has won the Nobel prize in chemistry, twice, is the vitamin "C" expert, and Sarah Ballentine PhD, author of the paleo approach. This is a comprehensive guide to Reversing Autoimmune Disease. It describes in detail, foods that can encourage inflammation and how you can go about identifying the food that are a problem for you. It also has charts with vitamin, mineral and amino acid content of each fruit, vegetable and meats. This is my go to guide at all times.

I believe that although fanatical in their own field, together they give a really good overall view of the big picture.

I don't believe in diets of any sort, as everyone's requirements are most likely different. The ground and the conditions that your food is grown in will dictate the supplements that you may or may not require.

Things that I believe have been key in my improvement are, reducing sugar as much as possible which includes keeping carbohydrates to a minimum, (I was ill for five weeks while getting off the sugar) and not eating any processed foods.
I was eating too much fruit. I now usually have preserved fruit (from local orchards where possible) with breakfast with LSA (Linseed sunflower and almond (ground) and 3-5 grams of vitamin C. Only one or two pieces of fruit max per day on the days that I eat fruit. Some days I might have a couple of eggs for breakfast. We have our own chickens. No processed breakfast cereals at all.
During the course of the day I have another 3-5 grams of vitamin C
I mix the vitamin C in a Glass of water kiefer usually in the afternoon as well. To this I add plant based minerals from Joel Wallach.
The water kiefir was the key to getting my gut working correctly. I couldn't believe the difference.

No fruit juice products they are extremely high in sugars. Only the juice that is in the fruit itself, after all, the fruit is a complete package isn't it.

I still have meat but have reduced it considerably, and now eat it with some fat attached. I have increased my fat intake in general to give me the energy lost in reducing sugar. My cholesterol has reduced.
Reducing sugar was key in getting my gut working correctly. The sugar is the first thing to be absorbed and it slowly allows the lower part of your system to become ineffective to the point that it wont absorb minerals which are the last things to be used. I was deficient in minerals even though I had been taking them for years. I don't get hungry any more.

I have brawn for a fat supplement when I feel I need it as well. I have increased my intake of offal ie kidney and liver etc but only have that occasionally. I have sardines regularly (high in vitamin D and B12) as well as fresh fish three times per week. No farmed fish, only locally caught or ocean dwellers eg cod or trevally etc. No shark at all due to the mercury issue.
The only cooking oils we now use are olive oil and coconut oil. No processed oils at oil.

We grow as much of our vegetables as possible, and always go to the garden before we got to the shops. We grow all year round where we are. We grow three or four types of potatoes, jerusalem artichokes, peas, beans of various types, red beet, carrots, radishes, tomatoes, broccoli, cabbages, cauliflower, brussel sprouts, lettuces, pickling onions, red onions, leeks, asparagus, garlic, rhubarb, silver beet celery, and spinach, also a fruit orchard.
Luckily we had the garden fairy well set up before I got sick. This way I can add minerals and nutrients to the soil as required. Our soil is deficient in magnesium and trace minerals where we are.
When the wegeners took a hold on my kidneys, I drank only filtered rain water, nothing else, for five months, boy was I pleased when my kidneys started recovering.
I believe vitamin supplements should be tailored to suit you own deficiencies, although my experience tells me that the RDIs of some vitamins are too low eg vitamin C and vitamin D. I also learned that vitamin D doesn't come from the sun! The medical profession has a lot to answer for in my opinion.
I have been taking magnesium since the 1980s due to a magnesium deficiency in my family due to the soil here, but have been told by doctors over the years that this is rubbish.

Doctors here, now prescribe magnesium to people with heart issues...........

Well I think that about covers the basics. hope it helps,

Lucky

[Alysia]

Hi Alysia,
I agree, being without meds might cost life, especially if you have done nothing to repair or improve your immune system.

To answer your questions, my creatinine was over 140 when I was on methotrexate and since my dietary changes and getting off the drugs its in now in the low 120s. I have also been on cyclaphosphamide and azathioprine.
I don't eat any white bread at all. If I do have bread I have a grain bread. Anything that is white and wheat derived has basically anything any good processed out of it. Hence no processed foods.

I would recommend reading books by four people.
Joel Wallach, he has a veterinary background and specializes in mineral deficiencies. Weston Price, a dentist has been called "Isaac newton of nutrition" Lynas Pauling who has won the Nobel prize in chemistry, twice, is the vitamin "C" expert, and Sarah Ballentine PhD, author of the paleo approach. This is a comprehensive guide to Reversing Autoimmune Disease. It describes in detail, foods that can encourage inflammation and how you can go about identifying the food that are a problem for you. It also has charts with vitamin, mineral and amino acid content of each fruit, vegetable and meats. This is my go to guide at all times.

I believe that although fanatical in their own field, together they give a really good overall view of the big picture.

I don't believe in diets of any sort, as everyone's requirements are most likely different. The ground and the conditions that your food is grown in will dictate the supplements that you may or may not require.

Things that I believe have been key in my improvement are, reducing sugar as much as possible which includes keeping carbohydrates to a minimum, (I was ill for five weeks while getting off the sugar) and not eating any processed foods.
I was eating too much fruit. I now usually have preserved fruit (from local orchards where possible) with breakfast with LSA (Linseed sunflower and almond (ground) and 3-5 grams of vitamin C. Only one or two pieces of fruit max per day on the days that I eat fruit. Some days I might have a couple of eggs for breakfast. We have our own chickens. No processed breakfast cereals at all.
During the course of the day I have another 3-5 grams of vitamin C
I mix the vitamin C in a Glass of water kiefer usually in the afternoon as well. To this I add plant based minerals from Joel Wallach.
The water kiefir was the key to getting my gut working correctly. I couldn't believe the difference.

No fruit juice products they are extremely high in sugars. Only the juice that is in the fruit itself, after all, the fruit is a complete package isn't it.

I still have meat but have reduced it considerably, and now eat it with some fat attached. I have increased my fat intake in general to give me the energy lost in reducing sugar. My cholesterol has reduced.
Reducing sugar was key in getting my gut working correctly. The sugar is the first thing to be absorbed and it slowly allows the lower part of your system to become ineffective to the point that it wont absorb minerals which are the last things to be used. I was deficient in minerals even though I had been taking them for years. I don't get hungry any more.

I have brawn for a fat supplement when I feel I need it as well. I have increased my intake of offal ie kidney and liver etc but only have that occasionally. I have sardines regularly (high in vitamin D and B12) as well as fresh fish three times per week. No farmed fish, only locally caught or ocean dwellers eg cod or trevally etc. No shark at all due to the mercury issue.
The only cooking oils we now use are olive oil and coconut oil. No processed oils at oil.

We grow as much of our vegetables as possible, and always go to the garden before we got to the shops. We grow all year round where we are. We grow three or four types of potatoes, jerusalem artichokes, peas, beans of various types, red beet, carrots, radishes, tomatoes, broccoli, cabbages, cauliflower, brussel sprouts, lettuces, pickling onions, red onions, leeks, asparagus, garlic, rhubarb, silver beet celery, and spinach, also a fruit orchard.
Luckily we had the garden fairy well set up before I got sick. This way I can add minerals and nutrients to the soil as required. Our soil is deficient in magnesium and trace minerals where we are.
When the wegeners took a hold on my kidneys, I drank only filtered rain water, nothing else, for five months, boy was I pleased when my kidneys started recovering.
I believe vitamin supplements should be tailored to suit you own deficiencies, although my experience tells me that the RDIs of some vitamins are too low eg vitamin C and vitamin D. I also learned that vitamin doesn't come from the sun! The medical profession has a lot to answer for in my opinion.
I have been taking magnesium since the 1980s due to a magnesium deficiency in my family due to the soil here, but have been told by doctors over the years that this is rubbish.

Doctors here, now prescribe magnesium to people with heart issues...........

Well I think that about covers the basics. hope it helps,

Lucky

Thank you SO much, Lucky, for taking the time and efforts to share all these with us. I appreciate it very much. Sounds like you have done a great research and much amazing work. Your garden must look like a little heaven on earth.

I wish I had the opportunities to create a nutrition setting like that or the ability to eat most of it (due to my colitis) But I will try with tiny steps. Maybe first with the sugars. It is hard to resist chocolate. I hope I can bear another kind of bread. I did find lately that eating organic eggs makes my stomach much better.

I have vitamin C deficincy so I will check what the author you mentioned above tells about it. Vitamin C deficiency can imitate few wg symptoms, btw, like gums bleedings and joints pains.

2 more questions if I may, which grain bread do you eat ? What about milk products ?

Thanks and God bless you.

[Lucky]

Alysia,
You are correct, even to me my garden looks magic. It certainly has kept me motivated through the last three years, although I needed help to raise the beds about 400mm because I was in too much pain getting down to ground level. I'm still going through that process but I can now sit on a small chair while gardening.
I tell my grand kids....... "It doesn't get any better than this".

Im a big picture type. I believe that a lot of people loose track of the fact that if their gut is not working correctly, they are not getting the nutrition they think they are. If your gut is not working correctly, you will still be hungry. You will be looking for more food to get the nutrients you need. It doesn't matter how much you eat if its not being processed. You then get overweight when in fact you are dying of malnutrition.
At one stage I was craving Vegemite, (a spread to put on toast) it is high in the B vitamins. When I ate it I would be sick and have a really bad headache for two days. This confused me. Why would I want Vegemite when I new it would make me sick? Years after I gave up Vegemite I found out I was vitamin D deficient. Once I rectified the vitamin D deficiency I could eat Vegemite again (providing the vitamin B that my body was looking for) also numerous other food intolerance's that I had. Sometimes your body is really hard to understand.

You mentioned vitamin C deficiency. Have you read the research done on vitamin C in gorillas? They are one of only three species that don't make vitamin C, they need to get it in their diet, the other two being guinea pigs and humans. The zoos were spending a huge amount of money (in the 1970s from memory), on getting gorillas for their exhibits only to have them die of heart attacks at about their mid life. Research found that the pellets they were feeding them did not contain enough vitamin C. They now add 40 grams of vitamin C per day to their food ration. They stopped dying prematurely.
Our recommended daily intake of vitamin C is 70mgs. This might be enough to avoid scurvy, but not enough to thrive. Research tells me that we probably need somewhere between 5 and 20 grams per day. When you start, take it to bowel tolerance. It it best taken throughout the day to maximize absorption. I buy sodium ascorbate from a chemist in bulk.

Your question re bread. I eat very little bread. Certainly not every day. The bread I eat is a mixed grain with no artificial colours, flavours or preservatives. It is branded Helgas.( I am in Australia)
A few years ago I had irritable bowl syndrome and I eliminated bread and other things with gluten in them and over time it cured itself, so I still tend to avoid those items.
Having said that, since I fixed my vitamin D deficiency my health has been better in general, one big one was no more headaches which had plagued me all my life. Maybe now I could try eating a bit more bread again. Just another thing that I haven't got around too.
If I had gut issues then gluten is one thing I would give up to start with, for sure.

Your milk question..... research tells me that a large portion of the human race is lactose intolerant. I think that if you were lactose intolerant then you would know about it. I am not but don't drink much of it mainly because anything good in it has long ago processed out. I used to drink goats milk in coffee but I gave up coffee many years ago as it used to go straight through me. Since I have sorted my gut issues I do occasionally l enjoy a real brewed coffee with no problems. I usually add the powdered milk which adds back in all the goodies processed out of milk. (I used to work in a food factory)
You mentioned chocolate.
There are two main reasons you are looking for chocolate. One is probably the sugar in the lighter chocolates and the most important one is the magnesium in the darker ones.
Magnesium is extremely important because of the bone destroying properties of the many drugs they give us for Wegeners.

I must say that I found changing your diet is extremely difficult to do. Over the years we eat certain things purely out of habit, or its easy to get, or easy to cook etc.
With this disease, I believe that if we don't get our systems working correctly, we are going to die from the drugs they are giving us, guaranteed. The number of patients who have had their kidneys destroyed by the various medications is absolutely criminal, and the saddest thing is most people don't even realize that this is happening.
If you do the research on prednisone you will read that we should never be subjected to the "moon face" and weight gain. This is caused purely by over prescription. This is the first side effect that lead me down this path of research.

It really is worth getting Sarah Ballentines book on reversing Auto-immune disease. It will answer all of questions you may have and many you didnt even know you had!
It is quite a process to eliminate foods one by one to sort out your needs but I can assure you, its well worth the effort. Her book can short cut which foods need to be avoided to start with, and may be re-introduced at a later date, and which ones are absolutely necessary in our diets.
Having said that, I am happy to share my research and experience anytime.

Lucky

[Alysia]

Thank you SO much, Lucky, for sharing so generously so much precious info. I appreciate it. Maybe its time you will write your own book ?
I will have to do some changes in my nutrition, carefully and slowly. I already tried gluten free but couldn't bear it.
It is interesting that we might crave what we need although we shouldnt allways go for it as it is. Go figure.

Anyway, whenever you feel like telling us more, I will be glad to read it. God bless you.

[Lucky]

The books have already been written. All we have to do is read them.
To save you some time here is a good place to start that is easy to read. They will email you some really good basic information if you wish. They mention the sour dough breads which might be of interest to you.
Sally Fallon who is involved with the weston price.org has written a great book called Nourishing Traditions
Good luck.

https://www.westonaprice.org/

(https://www.westonaprice.org/)

[mishb]

Lucky, my food situation is nearly the same as Alysia's, and I am also very low in vitamin C, because I cannot tolerate fruit and especially cannot tolerate anything citrus or with added citrus.

I totally agree with you about Helga's bread, which is the only bread that I can eat, without it causing me any joint pains.
Vegemite is my favourite spread of all time but I avoid it for 2 days a week, when I take my methotrexate.
Anything that contains folate, which vegemite does (all of the vitamin B's) should be avoided either side of taking methotrexate. It has worked for me, but then I need my vegemite again.

Foods that cause excessive inflammation in my body (and blood results) are peas, tomatoes, pasta, rice, processed meats, potatoes, citrus, berries and avocado.
The reason why the other breads hurt me so much, is that they usually contain citric acid, whereas Helga's does not.

Your vegatable garden sounds wonderful.

Alysia, I also cannot tolerate probiotics, but have recently found organic Apple Cider Vinegar tablets, which I am going to try because they say they are good for gut health, but as an added bonus, they can help to reduce stomach fat - win, win, I reckon :thumbsup:
As you know, I don't start anything new until I have a blood test as a base line.
I then start the new supplement or food item, and if it causes pain, I stop it, and if it doesn't cause pain I continue until I see what my next bloods results are like.
Starting it this way, if there is anything wrong with my blood tests, I know exactly what has caused the change - well, it's worked that way so far.

The best results I have ever had, are when I stopped potato...….sad but true. My favourite all time food, and it turned against me.

Anyway, if anyone else has tried the organic apple cider vinegar tablets, can you please let me know if you have had any results, good or bad.

[Lucky]

mishb,
I agree with your methodology however at the time I started this system I felt I wasn't going to live long enough to see it through. My answer was to apply the Autoimmune Protocol and eliminate all foods that were known to cause inflammation. This gave me immediate results. Then over time I was able to reintroduce my preferred foods. My experience is that once you get your system back in balance you will be able to tolerate small amounts of foods that were giving you grief.
In my case sugar is a good example. I can now tolerate a small amount occasionally that would have had me ill for days.
Never give up,

Lucky

[mishb]

I hope all is going well for you Lucky.

I think we have all been in the 'I won't be here long enough' situation, yet we are still fighting on and hopefully for a very long time.