http://www.dailymail.co.uk/health/article-1076594/How-tackle-Crohns-Disease-help-drugs.html
I think this is the Lo Flex diet................
I think this is the Lo Flex diet................
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A nice story about diet trial success for Crohn's
- Thread starter Mazen
- Start date
ameslouise
Moderator
Sure would be great if doctors were more willing to try these kinds of options.
Most people are not willing to make the lifestyle change, much easier to take a pill. I, for one, am way more open to this type of treatment plan than drugs, drugs and more drugs...
Most people are not willing to make the lifestyle change, much easier to take a pill. I, for one, am way more open to this type of treatment plan than drugs, drugs and more drugs...
I think you're very right about that. Hate to defend docs (a group I'm growing to loath more and more on almost an hourly basis... :lol: ) but human behavior is SOOOOO hard to change. Even when the need for it is obvious and the benefits so clear. Look how many people still smoke cigarettes. Amazing.ameslouise said:
Also, as the article states " ...there is no profit to be made from explaining how to control diet, so trials receive no funding and no one ever hears about the treatment, even if it is more effective"
Thanks for the article, Mazen. I have been toying with the idea of living on Ensure for a couple weeks, see how that goes, then slowly adding other foods one by one. I'd like to read more details of this approach.
Hi David
I think this approach is by giving first an elemental diet for several weeks (E028 was the one they used in UK I guess), and then go with the LoFlex diet, which is a low fiber low fat diet free of common allergic and food triggers, and then slowly introduce one food at a time and see how you can tolerate it.
I remember some of our friends on the forum in the UK have tried this.... there were also some posts about LoFlex
I think this approach is by giving first an elemental diet for several weeks (E028 was the one they used in UK I guess), and then go with the LoFlex diet, which is a low fiber low fat diet free of common allergic and food triggers, and then slowly introduce one food at a time and see how you can tolerate it.
I remember some of our friends on the forum in the UK have tried this.... there were also some posts about LoFlex
soupdragon69
ele mental leprechaun
Yes guys this is the regime I followed when first diagnosed xmas 06.
I did elemental 028 extra for a total of 6.5mths! Every time I tried to reintroduce food I ended up in agony. My asthma/allergy consultant, my gastro, my dermatology cons and my then GP all came to the same conclusion that I am allergic to modern day living! LOL
I followed the LOFFLEX diet too and discovered I have massive food intolerances. To date I am supposed to be gluten, diary, benzoate, azo dye and cinnamon free along with low fat low fibre high potassium high calcium.
My allergy/asthma consultant says its the best he has ever seen me health wise when I was on elemental and if he had his way I would be on the drinks for life!! It seems that every time I eat food it triggers generalised inflammation in my gut which builds until I can no longer cope and fall off my perch.
The regime is incredibly tough to stick to for me in relation to the above foods but I have come to realise that this is going to be a way of life for me and yes I feel tons better on it. I can also think clearly rather than being in a mental fog all the time and exhausted physically.
When I am "unwell" the weight piles on and when I am WELL it falls off me. I become bloated and carry alot of fluid when I am on the slide even though my trips to the toilet increase. Hey I am irish I am allowed to do things the other way round! LOL
Anyway, if anyone has any questions fire away and I will try to answer them. On the ensure aspect it isnt as good as the elemental as elemental is designed specifically for folk with gut problems like us and ensure is just a general supplement for folk that need a boost nutrition wise.
I still have my LOFFLEX book if anyone wants any info on that too.
I did elemental 028 extra for a total of 6.5mths! Every time I tried to reintroduce food I ended up in agony. My asthma/allergy consultant, my gastro, my dermatology cons and my then GP all came to the same conclusion that I am allergic to modern day living! LOL
I followed the LOFFLEX diet too and discovered I have massive food intolerances. To date I am supposed to be gluten, diary, benzoate, azo dye and cinnamon free along with low fat low fibre high potassium high calcium.
My allergy/asthma consultant says its the best he has ever seen me health wise when I was on elemental and if he had his way I would be on the drinks for life!! It seems that every time I eat food it triggers generalised inflammation in my gut which builds until I can no longer cope and fall off my perch.
The regime is incredibly tough to stick to for me in relation to the above foods but I have come to realise that this is going to be a way of life for me and yes I feel tons better on it. I can also think clearly rather than being in a mental fog all the time and exhausted physically.
When I am "unwell" the weight piles on and when I am WELL it falls off me. I become bloated and carry alot of fluid when I am on the slide even though my trips to the toilet increase. Hey I am irish I am allowed to do things the other way round! LOL
Anyway, if anyone has any questions fire away and I will try to answer them. On the ensure aspect it isnt as good as the elemental as elemental is designed specifically for folk with gut problems like us and ensure is just a general supplement for folk that need a boost nutrition wise.
I still have my LOFFLEX book if anyone wants any info on that too.
Interesting read. Struggling a bit with diet now, but the article with the exclusion of the beginning liquid diet sounds like what I have been doing for 15 years. Trial and error to find out what bothers me and what does not.
Nice story Mazen,
Continuously I hear people complaining about how tough it is to change their diet. I agree, your eating habits are formed at right around your adolescence, and for most people that type of diet sticks with them for the rest of their life. If you have no need to change your diet, you won't ever change it.
But for people like us, eating healthy is imperative. I'm not saying my diet is perfect, but the way I eat now is so far nutritionally superior than the way I used to eat it's crazy to think how far I've come. For example, my first couple years of college my diet mainly consisted of things I grew up eating (pizza, fast food, french fries, bread, SODA, PASTA, cake, reeses pieces, yea...).
After the last two years of experimenting with the SCD diet, Paleo diet, reading about diet, learning about diet (getting two degrees in Food Science and Dietetics) I've come to the conclusion that the best diet is one that is centered around eating lean meats, fruits and vegetables. I RARELY ever eat any of the stuff I listed above anymore, and by just cutting all that crap out of my diet I've gotten so much butter. I now eat tons of ham and cheddar cheese sandwiches on italian bread, lots of philly cheese steaks from publix, tons of bananas and pineapple, and about a half a plate of veggies everyday. I only drink water, no juice, no milk, no soda, alcohol maybe every other week if that. Just by doing that I can't describe how much better I feel. I can stay awake in class now and pay attention, I've gotten so much better at public speaking (something I've always struggled with), etc.
I can go on and on about how much better I am but I'll just stop there. I guess my point to this ramble is just that at first changing your diet IS TOUGH! When you have eaten things that you have eaten your whole life it is so hard to change that. But after time it does get much easier, it's taken nearly 2 years, but I don't ever really get cravings to eat terribly anymore, to go out at 1 in the morning and get a pizza or go to whataburger or to eat any junk food. You just have to develop the mentality that it's a lot of what you're eating that is making you sick. It's kind of like how you can notice (at least in my car) the difference between when you put in regular gasoline versus premium. If you're not getting the right fuel you're not going to function properly. Our food is our fuel and we (us crohnies) REQUIRE the best type of fuel! That's the way I look at it.
Continuously I hear people complaining about how tough it is to change their diet. I agree, your eating habits are formed at right around your adolescence, and for most people that type of diet sticks with them for the rest of their life. If you have no need to change your diet, you won't ever change it.
But for people like us, eating healthy is imperative. I'm not saying my diet is perfect, but the way I eat now is so far nutritionally superior than the way I used to eat it's crazy to think how far I've come. For example, my first couple years of college my diet mainly consisted of things I grew up eating (pizza, fast food, french fries, bread, SODA, PASTA, cake, reeses pieces, yea...).
After the last two years of experimenting with the SCD diet, Paleo diet, reading about diet, learning about diet (getting two degrees in Food Science and Dietetics) I've come to the conclusion that the best diet is one that is centered around eating lean meats, fruits and vegetables. I RARELY ever eat any of the stuff I listed above anymore, and by just cutting all that crap out of my diet I've gotten so much butter. I now eat tons of ham and cheddar cheese sandwiches on italian bread, lots of philly cheese steaks from publix, tons of bananas and pineapple, and about a half a plate of veggies everyday. I only drink water, no juice, no milk, no soda, alcohol maybe every other week if that. Just by doing that I can't describe how much better I feel. I can stay awake in class now and pay attention, I've gotten so much better at public speaking (something I've always struggled with), etc.
I can go on and on about how much better I am but I'll just stop there. I guess my point to this ramble is just that at first changing your diet IS TOUGH! When you have eaten things that you have eaten your whole life it is so hard to change that. But after time it does get much easier, it's taken nearly 2 years, but I don't ever really get cravings to eat terribly anymore, to go out at 1 in the morning and get a pizza or go to whataburger or to eat any junk food. You just have to develop the mentality that it's a lot of what you're eating that is making you sick. It's kind of like how you can notice (at least in my car) the difference between when you put in regular gasoline versus premium. If you're not getting the right fuel you're not going to function properly. Our food is our fuel and we (us crohnies) REQUIRE the best type of fuel! That's the way I look at it.
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ameslouise
Moderator
"Nothing tastes as good as being healthy feels."
I cut that out of a magazine and hung it on my fridge. I try to live by it every day.
It sucks, it's hard, I hate it, but as far as I know, no one has ever died from a healthy diet.
Inflamed is right -we owe it to ourselves to pay attention to everything that goes into our mouths. Just like we pay attention to everything that comes out the other end!
I cut that out of a magazine and hung it on my fridge. I try to live by it every day.
It sucks, it's hard, I hate it, but as far as I know, no one has ever died from a healthy diet.
Inflamed is right -we owe it to ourselves to pay attention to everything that goes into our mouths. Just like we pay attention to everything that comes out the other end!
Here is a link explaining this dietary approach
http://www.crohns.org.uk/Docs/3/The Dietary treatment of Crohns Disease.html
http://www.crohns.org.uk/Docs/3/The Dietary treatment of Crohns Disease.html
Hi Mazen:
I read this article over a year ago! Thought about trying it myself but did not find detailed instructions regarding what foods are allowed and how to add foods back in and in which order. Can you tell me where you downloaded the booklet?
Thanks!
Chris
I read this article over a year ago! Thought about trying it myself but did not find detailed instructions regarding what foods are allowed and how to add foods back in and in which order. Can you tell me where you downloaded the booklet?
Thanks!
Chris
Hi Chris. I downloaded it like a year ago, but cannot find it on the net anymore. But another memeber here has posted them on the below thread. Check the reply by NatalieMT
http://www.crohnsforum.com/showthread.php?t=7274
http://img.photobucket.com/albums/v11/NatashaH/LofflexPage1.jpg
http://img.photobucket.com/albums/v11/NatashaH/LofflexPage2.jpg
http://www.crohnsforum.com/showthread.php?t=7274
http://img.photobucket.com/albums/v11/NatashaH/LofflexPage1.jpg
http://img.photobucket.com/albums/v11/NatashaH/LofflexPage2.jpg
soupdragon69
ele mental leprechaun
Hey Mazen,
Think you find with those pages that white rice is ok so therefore the derivitive of rice with the rice milk is ok too and my dietitan at the time approved it for me as an alternative for those reasons.
On the fruit and veg front basically if it isnt listed in the allowed lists then the answer is no.
You go through your reintroduction with the main lists and then once completed you then look at other foods you may want to try and reintroduce.
The way they have based the LOFFLEX diet is what they have found in research that is least likely to irritate/upset the gut then reintroduce the most common basic foods that are used in every day life. Outside of that you then tailor it to your own needs.
As we know there is no specific diet for crohns unlike with a coeliac for instance. Thats one of the reasons LOFFLEX works so well because it gives you the variability needed for us as individuals.
Dr Hunter that did the research is at Addenbrookes where I go to see my gastro team. They are very much advocates of the regime and it really does work well.
For me its sticking to the results because I we have discovered so many food intolerances they keep saying I am basically allergic to modern living LOL
If there is anything else I can do to help just let me know! ((hugs))
Think you find with those pages that white rice is ok so therefore the derivitive of rice with the rice milk is ok too and my dietitan at the time approved it for me as an alternative for those reasons.
On the fruit and veg front basically if it isnt listed in the allowed lists then the answer is no.
You go through your reintroduction with the main lists and then once completed you then look at other foods you may want to try and reintroduce.
The way they have based the LOFFLEX diet is what they have found in research that is least likely to irritate/upset the gut then reintroduce the most common basic foods that are used in every day life. Outside of that you then tailor it to your own needs.
As we know there is no specific diet for crohns unlike with a coeliac for instance. Thats one of the reasons LOFFLEX works so well because it gives you the variability needed for us as individuals.
Dr Hunter that did the research is at Addenbrookes where I go to see my gastro team. They are very much advocates of the regime and it really does work well.
For me its sticking to the results because I we have discovered so many food intolerances they keep saying I am basically allergic to modern living LOL
If there is anything else I can do to help just let me know! ((hugs))
soupdragon69
ele mental leprechaun
Yes I was started on a good multivit in the hospital along with calcium and Vit D3 on top at the time so I dont see a reason why not if its something you normally take Mazen.
By the way the pages listed by Natalie MT dont seem to include the reintroduction pages.. Did you get them when you downloaded before?
If not I can supply them.
You know where I am if there is anything else I can help with.
((hugs))
By the way the pages listed by Natalie MT dont seem to include the reintroduction pages.. Did you get them when you downloaded before?
If not I can supply them.
You know where I am if there is anything else I can help with.
((hugs))
Hi Jan,
I was thinking of suggesting the elemental and exclusion diet to my Gastro when I see him next. I've just been diagnosed and put on Pred for a month which has worked wonders but I hate the side effects. He wants to put me on Azathiaprine long-term but I'd like to think I could manage my condition with diet...or at least give it a try first. I know you said that you have lots of food intolerances but do you still manage your Crohn's with diet alone...or do you have to take meds aswell? If you are managing it with diet alone, do you feel in full remission or do you still have some symptoms? And do they monitor your condition well to make sure there's no major inflmmation wreaking its havoc?
Any advice you can give would be great.
Many thanks,
Gail
I was thinking of suggesting the elemental and exclusion diet to my Gastro when I see him next. I've just been diagnosed and put on Pred for a month which has worked wonders but I hate the side effects. He wants to put me on Azathiaprine long-term but I'd like to think I could manage my condition with diet...or at least give it a try first. I know you said that you have lots of food intolerances but do you still manage your Crohn's with diet alone...or do you have to take meds aswell? If you are managing it with diet alone, do you feel in full remission or do you still have some symptoms? And do they monitor your condition well to make sure there's no major inflmmation wreaking its havoc?
Any advice you can give would be great.
Many thanks,
Gail
Thanks Mazen!
soupdragon69
ele mental leprechaun
Hiya Gail,
Sorry to hear you have Crohns... ((hugs))
I managed with the elemental initially and was originally given the option of steroids or antibiotics long term or elemental and see how it goes...
I went for the elemental because it made total sense to me that this was a way of actually physically getting the nutrition my body had been lacking - its designed to be absorbed in the the 1st metre of the small bowel allowing the rest of your gut to recover - without doing yet more meds as I was on antibiotics and steroids alot for my asthma and skin over the years and healing my gut as well. Be warned the drinks are an aquired taste and its best to get a variety at the start to try.
It can be very tough going initially but what helped me through was the thought of undoing the work I had put in already and each hour that went by was a step in the right direction.
You will need to be under a dietitian that specialises in crohns and knows what they are on about Gail. Mine was fantastic - in fact I have had 3 since diagnosis xmas 06 and they have all stayed in touch via email and organise my appointments with them to coincide with my consultant apps.
The other thing to remember is that the medics are not always up to date with how things should be done I was brought off mine very fast in the end and my dietitian was fuming when she discovered as she said there is very good research showing it is worth keeping some aspect of the elemental in your diet for up to 12mths after eating again to ensure good nutrition!
I ended up on remicade/infliximab Gail because the azathioprine, 6MP and methotrexate all affected my liver. I have been on remi for 3yrs this coming May and it has been a wonder drug because of all my other health issues not just my crohns. Having said that as long as I behave and keep things in order - which with my life is nigh on impossible LOL and it means I do fall off my perch every so often resulting in pred - I do manage with the remi every 6wks and elemental. Keep in mind though they have discovered with me that I have widespread inflammation that impacts on my asthma and skin as well when my gut kicks off. You may find your crohns is more managable and in one place only.
Diet is still very important to me and if I am totally honest I have had so much going on in my life of late and immense stress that I just havent stuck to what I am supposed to on the food front and paid the price with over mths pred, antibiotics and my gastro doc threatening to stop the remi and put me on a trial drug! I know for me its down to diet and I need to knuckle down to things which I am beginning to do again.
Elemental now? Yes I still do use it when I flare and I have an agreement with my consultant to do a month of it when I feel I am flaring - believe it or not I also crave the drinks when I am unwell LOL I guess its a sort of mental safety net or comforter LOL because I know I will feel better soon. On the days where I dont eat so well I also will supplement a drink instead so yes it still plays quite a big part in my life and think it always will. Hence I am a huge advocate of it.
If there is any way I can help just shout ok?
Thinking of you..
Sorry to hear you have Crohns... ((hugs))
I managed with the elemental initially and was originally given the option of steroids or antibiotics long term or elemental and see how it goes...
I went for the elemental because it made total sense to me that this was a way of actually physically getting the nutrition my body had been lacking - its designed to be absorbed in the the 1st metre of the small bowel allowing the rest of your gut to recover - without doing yet more meds as I was on antibiotics and steroids alot for my asthma and skin over the years and healing my gut as well. Be warned the drinks are an aquired taste and its best to get a variety at the start to try.
It can be very tough going initially but what helped me through was the thought of undoing the work I had put in already and each hour that went by was a step in the right direction.
You will need to be under a dietitian that specialises in crohns and knows what they are on about Gail. Mine was fantastic - in fact I have had 3 since diagnosis xmas 06 and they have all stayed in touch via email and organise my appointments with them to coincide with my consultant apps.
The other thing to remember is that the medics are not always up to date with how things should be done I was brought off mine very fast in the end and my dietitian was fuming when she discovered as she said there is very good research showing it is worth keeping some aspect of the elemental in your diet for up to 12mths after eating again to ensure good nutrition!
I ended up on remicade/infliximab Gail because the azathioprine, 6MP and methotrexate all affected my liver. I have been on remi for 3yrs this coming May and it has been a wonder drug because of all my other health issues not just my crohns. Having said that as long as I behave and keep things in order - which with my life is nigh on impossible LOL and it means I do fall off my perch every so often resulting in pred - I do manage with the remi every 6wks and elemental. Keep in mind though they have discovered with me that I have widespread inflammation that impacts on my asthma and skin as well when my gut kicks off. You may find your crohns is more managable and in one place only.
Diet is still very important to me and if I am totally honest I have had so much going on in my life of late and immense stress that I just havent stuck to what I am supposed to on the food front and paid the price with over mths pred, antibiotics and my gastro doc threatening to stop the remi and put me on a trial drug! I know for me its down to diet and I need to knuckle down to things which I am beginning to do again.
Elemental now? Yes I still do use it when I flare and I have an agreement with my consultant to do a month of it when I feel I am flaring - believe it or not I also crave the drinks when I am unwell LOL I guess its a sort of mental safety net or comforter LOL because I know I will feel better soon. On the days where I dont eat so well I also will supplement a drink instead so yes it still plays quite a big part in my life and think it always will. Hence I am a huge advocate of it.
If there is any way I can help just shout ok?
Thinking of you..
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Oh Jan, you have a lot of problems to contend with. You sound really determined and positive though and it's reassuring that you manage your conditions so well. Thanks lots for your advice.
I'm still not sure what I want to opt for treatment-wise. In some ways I'm like you in that I have inflammation going on in my body that's been there for years and years - not as serious as you but it all adds up. I've got mild asthma, rhinitis, sinusitis, interstitial cystitis, occasional iritis, mild excema, mild rosacea and joint pain. I've not connected all these things until I got the Crohn's diagnosis and just put up with them all over the years as docs never took any of them seriously. It wasn't until I went on the steroids that these all cleared up and I felt zippideedoodah! I was shocked at the feeling of being able to breath properly, not be constantly wanting a pee, not having sinus headaches etc etc as well as having no Crohn's symptoms. You kind of get used to being under par don't you? So anyway, I suppose if I opted for an immunomodulator like Aza then I guess it might help all these other mild inflammatory things at the same time......
But then again maybe I can put off the drugs for a while at least....I'm a pretty disciplined when I need to be and think I could cope with using the elemental and exclusion as a treatment for flares. I think there's a dietician attached to the clinic where I go so I could ask to see him/her.
Anyway, I'll keep you posted. Thanks so much for your fab advice Jan. I learnt a lot from your other posts too.
Gail
xxx
And Mazen - thanks lots for posting the article. I know diet won't work for everyone but it's very encouraging.
I'm still not sure what I want to opt for treatment-wise. In some ways I'm like you in that I have inflammation going on in my body that's been there for years and years - not as serious as you but it all adds up. I've got mild asthma, rhinitis, sinusitis, interstitial cystitis, occasional iritis, mild excema, mild rosacea and joint pain. I've not connected all these things until I got the Crohn's diagnosis and just put up with them all over the years as docs never took any of them seriously. It wasn't until I went on the steroids that these all cleared up and I felt zippideedoodah! I was shocked at the feeling of being able to breath properly, not be constantly wanting a pee, not having sinus headaches etc etc as well as having no Crohn's symptoms. You kind of get used to being under par don't you? So anyway, I suppose if I opted for an immunomodulator like Aza then I guess it might help all these other mild inflammatory things at the same time......
But then again maybe I can put off the drugs for a while at least....I'm a pretty disciplined when I need to be and think I could cope with using the elemental and exclusion as a treatment for flares. I think there's a dietician attached to the clinic where I go so I could ask to see him/her.
Anyway, I'll keep you posted. Thanks so much for your fab advice Jan. I learnt a lot from your other posts too.
Gail
xxx
And Mazen - thanks lots for posting the article. I know diet won't work for everyone but it's very encouraging.
It may be that different people have different trigger foods. Mine are wheat, corn and gluten. But I also have to eliminate all their derivatives, such as corn syrup and soy sauce. The best way to find your trigger foods is to keep a food diary. It took me several years. I wrote down everything I ate or drank. I also wrote down my bathroom trips and their results. After a while I started seeing trends. At first I thought it was wheat and gluten. I cut those out and it helped a lot. But it wasn't until I cut out corn and all corn products that I finally achieved 100% relief. You can figure out your trigger foods, but it takes a while. Plus, very hard to change your diet.................Lynne
Very interesting post! I'm going to have to read this thoroughly when I get home from work to pick up all the good advice!
I really wish that doctors would tell us more about diet as a means of treating Crohn's. The article you posted Mazen was really good, and it was alarming to read that diet often is not suggested as it is "easier to give the patient a pill" etc. It really seems like we need to fight both for ourselves and other in this matter, in order to find the best possible way to treat our disease. If diet is the key to feeling better, we just need to get our act together and go through with it. It's not really a difficult choice when you think about it: feeling really sick and going to the toilet all the time, or feeling good and normal on a different (and I guess difficult) diet!
Lots of love,
I really wish that doctors would tell us more about diet as a means of treating Crohn's. The article you posted Mazen was really good, and it was alarming to read that diet often is not suggested as it is "easier to give the patient a pill" etc. It really seems like we need to fight both for ourselves and other in this matter, in order to find the best possible way to treat our disease. If diet is the key to feeling better, we just need to get our act together and go through with it. It's not really a difficult choice when you think about it: feeling really sick and going to the toilet all the time, or feeling good and normal on a different (and I guess difficult) diet!
Lots of love,
Great Post Mazen, and thanks for the personal experience in regards to this diet Jan.
I'm on a extremely strict diet as well, and true at first it is hard, but the benefits (physically, mentally and emotionally) outweigh the craving for chocolate .
Jan, sorry for the ugly question to follow, but when you were on the liquid diet for 2-3 weeks, did you form a solid stool? The reason I ask is that I suffer from anal fissures which keep tearing because of my solid stools. I am wondering though that if I try a liquid diet for a couple of weeks it might allow the fissures to really heal if the liquid diet forms a more soft stool?
Fou.
I'm on a extremely strict diet as well, and true at first it is hard, but the benefits (physically, mentally and emotionally) outweigh the craving for chocolate
.Jan, sorry for the ugly question to follow, but when you were on the liquid diet for 2-3 weeks, did you form a solid stool? The reason I ask is that I suffer from anal fissures which keep tearing because of my solid stools. I am wondering though that if I try a liquid diet for a couple of weeks it might allow the fissures to really heal if the liquid diet forms a more soft stool?
Fou.
merrywidow
mum with a dogdy tum
that is a realy good link. i dont know if i would have the will power to follow the "diet" though as i would pick at food that i wasnt yet allowed. it would be good to find out for sure what really makes us bad though. i know that dairy is one of my triggers, not sure about any other food though