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06-14-2013, 07:40 AM   #1
crunch
 
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LOFFLEX diary - currently success

so, having used the forum for advice support for the last couple of years, think its time to give back, so I'm going to do a bit of a diary about how LOFFLEX seems to be helping me -appreciate this won't help everybody, not everyone can get on it, or get the support to do it, so please don't shoot me down.

bit of history - started having issues in 2010, but having trained for a 50+ cycle ride for charity, put some issues down to that. Early in 2011 I went Australia for a holiday and having heard of some people having issues with milk I resolved not to have any - grand plan scupped by shingles!! Doctors there asked if I had any underlying medical conditions, and I said not that I was aware of and put it all down to jetlag. When I returned to the UK, then I put issues down to the post-hepectic neuralgia I was experiencing, but by Easter weight was down and there was blood in the bowl which got my head of the sand and a trip to the docs! Was sent to the local hospital to see a gastro, had a look up (not pleasant) and booked me for a colonoscopy. Woke up in the middle to see the ulcers and said that sounds like crohns but had to wait for formal diagnosis and biopsy results. In the meantime an 8-week course of pred left me feeling better and gaining weight and I started looking for other ways of treating it and found some mention of LOFFLEX when I googled crohn's and diet treatment. It took a while to get back in to see someone to get a diagnosis.

Diagnosed November 2011, from tests in July - GO NHS!
06-14-2013, 07:50 AM   #2
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having found a bit on here, including the lists of good and bad foods, I started on LOFFLEX in autumn (fall) 2011, two weeks of chicken and rice, but not fully understanding it all with the limited information, my rice was bought and egg-fried and my chicken was marinated and baked. Then I started testing foods and again I didn't get the importance of trying and individual food group, testing whole meals.

November I got the formal diagnosis and the opinion that diet couldn't help me as my crohns was in the large intestine. I went on to Azathioprine, two a day for a week no problem, then up to full dose of 4 a day and very ill, praying to the white porcelain god in the bathroom. Nurses said I needed to re-present, in other words make myself ill again to check it was the pills and not something else. This time I was ill the day of taking them, about a week after the initial reaction, and basically slept for 24 hours feeling rotten.

Next was mercaptapurine, a different form of the same drug, but he seemed to think it worth trying... this was two a day, and not being sure of the dose I took one in the morning, no problem. Took another in the afternoon and within 30 minutes, was hot, dizzy and out of sorts. Couple of hours later praying to the white god again I thought might have got rid of it out of my system, but enough was absorbed that I was still feeling bad, back ache etc and looking up the side-effects, planning how to get myself to hospital as it sounded like something serious like pancreatitis. Managed to calm myself down with an episode of Big Bang Theory (!) and then managed to sleep and all over. Sickest I have EVER been - in the course of december 2011 I lost a stone in weight - most people put on weight at christmas!
06-14-2013, 07:57 AM   #3
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after christmas he wanted to put me on infliximab/remicade business, but as I read up on it, I wasn't keen. For people who've had crohn's for years, it sounded like manna from heaven, they could gain weight, feel better etc, but could also develop an intolerance to it, and I had only been diagnosed for a few months and thought we should keep that in reserve. A meeting with doctor, him plus about 4 other people covering his arse I suspect, said if I didn't take it there was a 50/50 chance I would need surgery. I asked my GP for a second opinion and went private to see the man who had devised LOFFLEX - Prof Hunter in Cambridge.

First visit in June 2012 - he agreed it was crohns and he could help me, no drugs, but first back to base diet and see the dietician to explain it in more detail to me, and then an MRI to check for crohns in small intestine - guess what, the NHS never looked there, but there it was!

So whilst everyone else was enjoying the brief summer and the olympics, I enjoyed having something to take my mind off things as I drank 5 pints of liquid diet a day for 2 weeks. Elemental comes in multiple flavours and smells ok, but none of them tasted good to me, but treat it as medicine...

(My Elemental advice - get a special glass, about a third of a pint, make sure you chill it in advance - make up new jug as finishing old jug, a glass every 45 minutes, like a shot with a water chaser and have something to distract you in between times, like olympics or a mega boxset or three!)

Last edited by crunch; 06-14-2013 at 08:29 AM. Reason: error
06-14-2013, 08:04 AM   #4
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after 2 weeks of Elemental, 2 weeks of base diet, really is chicken and rice, rice crispies and rice milk for breakfast, ocasionally a steak/piece of meat, jacket potato (no skin) green thin french beans and some foxs glacier mints. They give you a liitle booklet with all the details of the diet and lots of pages to note what you eat and any effects, but I started a similar diary in Excel, along with my weight and score each day.

googling found me a receipe for biscuits, nothing like normal, but when you crave something sweet after a meal or with tea - vanilla or ginger with rice flour, freefrom marg and sugar - which kept me sane.

had four weeks in total of base diet with calprotectin tests in between each two week chunk - stool sample off in the mail to a place in london - and my levels went from over 1800 to below 1000 and I was allowed to start testing foods.

Last edited by crunch; 06-14-2013 at 08:30 AM.
06-14-2013, 08:12 AM   #5
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Testing is risk ranked, so foods least likely in their experience to cause an issue are tested first. So bacon was first on the list - now I like bacon, but normally it comes in a butty (bread for those not versed in butties) or with eggs, and it comes a chore astoundingly quickly - what shall I have for tea, oh yes, bacon! Bacon for breakfast, no oil, dried on kitchen paper and eat before gets cold, jacket potato (no skin) and chicken for lunch and bacon for tea. Success and on to oats - porridge with rice milk for breakfast and made my own flapjack with freefrom marg and had those in the evening as my second dose of oats, more success.

Now unfortunately in sept 2012 I had two weddings to attend and the paralympics, where I took my own chicken and rice cakes, but when looking for something to eat on the train home spotted some crisps (chips in US) which were just potato sunflower and salt - which looking ok, but I had forgotten the 'no cold potato' rule. Soon this was giving me an issue and things were looking down, but when I cut them out, things went back to being OK!

Next on the list was rye, and I still have the packet of ryevita at home, but rice cakes were doing me fine, so I've still not tested it... Tea was next and the same thing - my cousin had introduced me to peppermint and nettle tea as I found peppermint on its own to be a bit strong, so again - yet to test.
06-14-2013, 08:26 AM   #6
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perhaps I should give you a bit of background about me - that picture was taken just before I developed shingles in oz, and me loosing weight wasn't really a problem but as I tell everyone, the silver lining of the cloud - I've lost about 5 stone in total, good for my long term health.

i live alone and am no great cook, I re-heat from the freezer but no cook. I have always been a fussy eater - got strong taste buds, so things other people can cope with are over-powering to me, can smell what my parents had for lunch that kinda thing. Therefore I'm not a big alcohol drinker, like a shandy, but nothing more, also don't do coffee.... I mention this as when people ask about diet these, plus chocolate, are the things most people say they couldn't cope without - plus onions, but I hate them! Also living on my own and working in an office with a site canteen which does jacket potatoes every day has undoubtably made this all easier for me, previous lives working in retail stores of from my car would pobably have been impossible, and doing LOFFLEX as part of family, child or adult, would be a part-time job.

However, Prof says he has a 95% success rate with LOFFLEX - IF and thats a big IF you can get on the diet in the first place... and in about 5 years time, my calprotectin will be the same level as a non-crohnie...
06-14-2013, 08:32 AM   #7
rollinstone
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Glad your doing so well I hope you continue to do well, I have that book but haven't been game enough to do the elemental extra, in currently drinking fortisips, they have heaps of corn syrup in them though... But I'm really only doing a 48 hour fast to give my digestive system a rest (I cheated on my SCD diet quiet badly this week)
06-14-2013, 10:40 AM   #8
crunch
 
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this book has all the details - http://crohns.org.uk/professor_hunter/books Inflammatory Bowel Disease: The essential guide to controlling Crohn's Disease, Colitis and Other IBDs.
06-14-2013, 02:05 PM   #9
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the next thing to test was eggs, the only thing there is any history of issues with in the family. You're supposed to have 2 a day, but the first time I tried them was whilst I was on holiday and hadn't yet worked out the cold potato thing and then I got a filthy cold on the way home, so I waited til all clear again and started again. I tried scrambled and hard boiled, sometimes 2 eggs sometimes one at a time, but they had teh normal effect eggs have, bunging me up which meant that when i had a bm it wasn't always good. So I left eggs, waited a bit and moved on to milk.

Milk is another of the food groups where it is prescriptive, a pint a day, so I'd have some with my porridge, having passed oats I could add them anywhere to the diet, and then drinking the rest of my pint in the evening, pass.

next on the wish list, as I was trying to get to a christmas dessert, was chocolate, which they suggest you try as plain chocolate, but as I don't like that they said if you pass milk you can have milk choc. However, its hard to find chocolate without vegetable oil in, apparently there to make it look silky, but the own brand stuff seems to be ok - pass.

that got me to christmas and that was my lowest weight point.
06-14-2013, 02:12 PM   #10
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january I tried cheese, having passed milk, both on its own and on a jacket potato and more success and I started to think this elimination diet was easy - famous last words.

Next was apple, which I used to eat plus drink apple juice lots, I started with both, apple with skin off and juice but day three brought what I call a splat, so I stopped.

I tried egg again when stable, but too much the same results, constipation then a mixed bm, feels solid but mixed in the bowl, so stop that for a bit. Still can't work out if that is a bad reaction or just the natural effects of eggs..

All this time I've been leaving the skin of my lunchtime jacket potato, due presumably to the amount of fibre is brings, before christmas with chicken and since passing cheese, with cheese from home - as the shop bought grated cheese has potato starch to keep it separate and that was the problem with crisps before christmas.

so the next thing I tried was eating the potato with the skin, a little bit, then a bit more, as they tell you to do when testing something more fiberous, and that's a pass.

Last edited by crunch; 06-23-2013 at 05:24 AM.
06-22-2013, 07:34 AM   #11
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Nice Post! and hope u keep doing well and update us as well.
I read Prof Hunter book - and would suggest it to all IBDs - lot of info there and very practical suggestions - for example LOFFLEX.
We are following a similar concept with my daughter - but via SCD.
Good luck!
06-23-2013, 05:31 AM   #12
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February I tried apple again, as getting more vit C seemed like a good idea, and as an always fussy eater, getting more fruit in was a good idea, so this time I tried just juice but on day two brought powdery bm and discomfort so I took that as a fail. All these fails will be tried again at some point.

mid Feb, off to see Prof again, having gone from seeing him fortnightly to monthly, then to six week gaps. Caprotectin is his key test, sending a stool sample off about 7-10 days before seeing him and the level had reduced at again to 549, when pre-xmas was 918, so still moving in the right direction and the testing had not caused any permanent issues or re-started anything.

Unfortunately, somewhere between seeing him and lunch with my folks, I got a filthy cough/cold thing, thought I had a chest infection, but GP said no, but pain when all you can take is soluble paracetemol (acetaminophen in US) and it took about a month to get over it. Of course, fighting something else and being under the weather paid havoc with my bowel movements and for a while I was thinking that I was going to have to go back and see him. Having the week off before easter, I had some chores to do round the house, but also some time to sleep better and take real care of what I ate, and I came out of the week in a better place.

Its astounding how much enthusiasm that you loose with all the lack of energy, and I hadn't realised how much this had affected me, just going through the motions of work, laundry, grocery shopping etc, until I start to look round the house and start doing jobs or tidying up that previously I had let slide...!
06-23-2013, 05:44 AM   #13
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by the start of April, I felt prepared to start testing again - given that the summer should be coming, I was keen to get to bread so I could take sandwiches to the cricket, but before you can try bread, you have to be ok on both yeast and wheat. How to test yeast though? Suggestion is yeast spread - marmite or vegemite kinda thing, the smell of which makes me hurl, so I got some yeast tablets and took two a day - ok.

went straight on to peas as fed up with carrots, and another pass! I should say that there are foods that I've missed in the list, which is already rated for the least troublesome foods first. Some I don't generally eat - onions, coffee, banana and some I didn't need like normal tea when the peppermint/nettle was doing ok and rye by testing ryvita when rice cakes are similar.

I waited a week as I had a busy weekend and then tried tomato - now this is a food I don't eat a lot of normally, except in a bolognase sauce or as ketchup. As I couldn't have pasta spaghetti was out, but I made up a number of batches of bolognase and had them on jacket potato for lunch or with mash for dinner and I thought I was doing really really well - I sent off the biggest sample in preparation for seeing the prof the following week really confident, but that evening was an accident followed by a splat and lots, so no, tomato not good! Fortunately, at the end of the month the score was still down at 417.
06-23-2013, 05:52 AM   #14
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Nice Post! and hope u keep doing well and update us as well.
I read Prof Hunter book - and would suggest it to all IBDs - lot of info there and very practical suggestions - for example LOFFLEX.
We are following a similar concept with my daughter - but via SCD.
Good luck!
hope goes well with your daughter Scooby - any of these are hard work, I've never seriously tried a 'diet' as I never had any hope of success, but its better than surgery and every time I'm tempted to break it, I think of 2 more weeks of liquid diet.. When people ask me why I don't just have one pizza or whatever, I suggest that if they had whatever their weakness is - wine often - they then had to have tripe for 3 meals a day for 2 weeks, would they have the wine tonight? The answer is always a definite NO!
06-23-2013, 08:19 AM   #15
helena101
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Hi Crunch! Glad to see you are doing so well on your diet! I also went to see Prof Hunter soon after diagnosis and fly in from Greece every few months to see him. I have an appointment next week in fact.
I have had 90% success with his diet, in that I managed to avoid any of the stronger drugs, but am still on asacol. I have been in full remission though the last two years thanks to this combination of diet and asacol (my last few Calprotectins were at 15 or below!).
06-23-2013, 08:23 AM   #16
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Wanted to add, please keep this thread going, it is really helpful for everyone to see what others have tried and how it went for them...
06-23-2013, 12:25 PM   #17
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Thanks Helena, I'd seen you comment on here amongst others, which were part of the reason why I persevered with trying to get onto LOFFLEX, know its not for all, but still drugs free at the moment and that's why I thought I'd put a diary up of how it works and my experiences - hope to remember to continue...

I'm seeing him about 10 days after you, hope the weather gets better for you before then!
07-20-2013, 11:02 AM   #18
helena101
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Crunch, how have you been doing this last month?? I hope all is well and you have added more foods?
09-29-2013, 03:48 PM   #19
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May brought a work trip to the Channel islands - the customs officer didn't seem phased by my luggage being split equally between clothes, food and work stuff... I made some more soup (JS chick stock, breast, potato, swede, parsnip) and froze it, then with my mothers advice, wrapped it in newspaper and then surrounded it with frozen peas and chips! Added two packets of my standard burgers most of which made it to my self catering accommodation. Good think too as was tricky on the island.

Home to try another food - corn, which the prof thought could be the cause of a major upset last July, tricky one... went for cornflakes for breakfast and then gluten free pasta (which is 50/50 rice and corn flour) for dinner, sticking with normal lunch.... yet again it was fine for three days and just when you think its ok it bites you and really unhappy evening and following morning...

so no cornstarch, cornflour, maize, etc so between that and tomato, it'll be a long time before I eat in an italian again!!
09-29-2013, 04:02 PM   #20
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I waited a while before trying the next thing on the list, wheat, this along with Milk and eggs is one of the foods with a specified requirement on the diet - 7 days instead of 4. Again tricky to get in on its own - started with a wheaty cereal mini shredded wheats for breakfast and then cooked (well baked) some shortbreads to have later in the day.. that did a couple of days, then a bit of normal pasta.... all seemed fine - seemed too good to be true so I went a few more days before believing it!

I went straight on to bread - tricky to buy as many said vegtable oil on the ingredients, but JS bread is palm or rapeseed oil so that was an option, so toast for breakfast, bread with dinner and again I went over 7 days to be sure, and have had pretty much every day since and still no issue!! great for days out over the summer!

I even managed to fit in nuts before the end of the month, a handful twice a day, making sure I chewed them well, again no problem!

and that took me to the sample when I was due to see the prof in July - more of that next time...
09-30-2013, 12:27 AM   #21
helena101
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Thanks for updating. Great to hear you are doing so well and the process of adding foods is going so smoothly!!
Maybe you will get to have Italian in the end! Pesto sauce is only basil, pine nuts, garlic, olive oil and Parmesan... Can you have Parmesan? Maybe even carbonara will end up being ok (bacon, egg, I think that's it)... Maybe a risotto.
Are you still working with a dietician? Mine (Jenny Woolner) was slowing down/stopping on my last visit to the UK. I found her very helpful, I hope yours is too. Keep us posted on your progress... You probably don't have too much longer to go before you finish up with the main foods?
10-01-2013, 02:17 PM   #22
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thanks for continued support Helena, have seen Sally a couple of times and she does give me a few ideas! I imagine parmesan will be ok, but egg is problematical and I'm afraid pesto has always turned my stomach! far too strong a scent for me... If Prof is right, and he has been on the money so far, then in a couple of years I'll be able to have pizzza again!
11-05-2013, 03:28 PM   #23
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sooo the end of june beginning of July saw me away for a week, fortunately in the UK, so was able to book into a converted barn with full kitchen, so able to buy and cook the normal things, with a couple of meals out of chicken or steak. On my return home I sent of a rather dodgy double sample to prof and saw him a week later a bit worried about the result - the double sample was for the lab to check the standard results which had apparently been a bit random - no need to worry, 27 and 34, so under 50 as prof had forecast a year earlier....

I also had a session with the dietician who gave me some tips on how to test the remaining things on the list, started with egg in things like cakes and other baked goods, tried over a number of days in good volumes, no problems. Then citrus in the form of old-fashioned lemonade - 5 days no problem, so could have orange again - useful! To do Barley was tricky, but the only thing I had found that I was prevented from was Shreddies (breakfast cereal) and dietician said just to try that and check could tolerate that - also successful, followed by black tea, butter on bread - all successful!

so now I'm at the end of the list and have a definite list of things to avoid - tomato, corn, cold potato, apple, plus eggs on their own and lettuce which doesn't so much upset as seem to go straight through!!

next time to see prof is December, gap of 6 months, so he also feels I'm going the right way. That's not to say I don't have dodgy bm or occasional discomfort, especially across the top of my intestine, but normally caused by eating a bit too much of the nice things which are prob too fatty for my system still (!) and have planned a trip down under for fun and work in the new year...

hope all is good with everyone else too.
11-05-2013, 03:54 PM   #24
helena101
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Fantastic! Thanks for updating. Glad to hear you are doing so well!
08-20-2017, 02:15 AM   #25
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Hello, what are you going on now with LOFFLEX diet?Wating for your good responses!

sooo the end of june beginning of July saw me away for a week, fortunately in the UK, so was able to book into a converted barn with full kitchen, so able to buy and cook the normal things, with a couple of meals out of chicken or steak. On my return home I sent of a rather dodgy double sample to prof and saw him a week later a bit worried about the result - the double sample was for the lab to check the standard results which had apparently been a bit random - no need to worry, 27 and 34, so under 50 as prof had forecast a year earlier....

I also had a session with the dietician who gave me some tips on how to test the remaining things on the list, started with egg in things like cakes and other baked goods, tried over a number of days in good volumes, no problems. Then citrus in the form of old-fashioned lemonade - 5 days no problem, so could have orange again - useful! To do Barley was tricky, but the only thing I had found that I was prevented from was Shreddies (breakfast cereal) and dietician said just to try that and check could tolerate that - also successful, followed by black tea, butter on bread - all successful!

so now I'm at the end of the list and have a definite list of things to avoid - tomato, corn, cold potato, apple, plus eggs on their own and lettuce which doesn't so much upset as seem to go straight through!!

next time to see prof is December, gap of 6 months, so he also feels I'm going the right way. That's not to say I don't have dodgy bm or occasional discomfort, especially across the top of my intestine, but normally caused by eating a bit too much of the nice things which are prob too fatty for my system still (!) and have planned a trip down under for fun and work in the new year...

hope all is good with everyone else too.
08-22-2017, 10:06 AM   #26
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sorry, successful enough that I can be off doing some other things...

Prof has retired, before he went I got a lecture about being intelligent grown up and sensible (!) and some forms to continue calprotectin testing with my local doctor (though I haven't been the best with this) and that if my levels stayed down I could start re-testing foods after five years....

well I've been fine crohn's wise, have worked out what works for me, how to keep away from trigger foods, no similar symptoms though I do have phases of better and worse, continued to monitor input and output until last year plus my weight (which I will admit has drifted further up than I'd like if that is any indicator or bowel health) and even been on some cricket tours - 14 Aus/Edinburgh, 15 NZ/Aus/Dublin/Malta, 16 SA/York, 17 so far Aus/NZ/Cornwall.

as I've said before lucky (!) in the LOFFLEX respect that I live on my own, decent british supermarkets, canteen at work that does jacket potatoes that were my staple lunch for the first year. And when I travel, I go to places where english is a key language and stay in self catering accommodation with decent cooking facilities and live in. I will admit to a pretty boring diet, but I did get some nutrition assessment when we got to the end of testing, plus I do occasionally get some options advice from my sister-in-law who runs a restaurant and has LOTs of cookery books....

As I've also said before, I would have thought it an awful lot harder if the crohnie is in a family, esp if one of the grownups(!), or you don't have a freezer or decent supermarkets nearby, or probably hardest if you are a foody and like rich, creamy or boozy meals - certainly my diet would be a stretch for you... BUT I compare it to how ill the pills made me and the liquid food diets challenges and think I've found an acceptable middle road.

The biggest challenge for LOFFLEX is I'm not sure who is taking forward Prof's work at Addenbrooke's and if this is even an option for folks recently diagnosed...

wishing you all well
08-22-2017, 11:48 AM   #27
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crunch, Thank you very much indeed! Do you have any medicines for the crohn's disease?
09-02-2017, 04:39 PM   #28
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Hi crunch,

I'm a fellow traveller on the LOFFLEX route - glad to hear you are doing well.

Have you expanded your diet much following the initial testing?

And when you say you have "phases of better and worse", were you able to link it with foods you've eaten? Or was it just down to life in general affecting your symptoms?
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Other supplements as needed: Adcal D3, Sytron (liquid iron, much more gentle on the stomach)
09-03-2017, 07:51 AM   #29
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I'm not on any medicines at all currently, they either didn't do anything or made me vvvv poorly sick, lots of praying to the white porcelain gods... I do take daily vitamins, which I was taking before I became symptomatic and that prof/ dietitian approved of.

Not retried any foods, Prof said needed to have low calprotectin levels for five years - its not been that long yet, and not been measured recently... I do occasionally find something I can expand my diet with - cheesy sauce pasta bake say, but generally my repertoire is pretty small - this is what I think many people would struggle with, along with the struggles for eating out!

My ups and downs are mix of life, me pushing boundaries and occasionally recipe or ingredient changes - something that says it has some form of sugar, but doesn't say where is normally the problem so I assume there is some corn in there...

all cope-able for me and all way better than I was in 2011/12!
09-03-2017, 12:14 PM   #30
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Thank you very much!Your success story make me confident!
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