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Crohn's Disease Forum » Your Story » Success Stories » Elemental and Elimination Success


 
11-17-2014, 11:55 PM   #61
happy
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Hi Noah,
Sorry to hear that you are running into trouble after initial success with EN and exclusion diet.

I don't have a simple answer for you. It did take me several tries to resume eating safely after achieving remission with EN.

So, just a reminder that Dr. Hunter's approach is to do full EN followed by either a LOFFLEX (see above) or a full exclusion diet. The EEN is a necessary first step because the theory is that the EN alters the bowel flora and that this altered flora stops the inflammation and encourages healing. The inflammation returns if the bowel flora is altered again by foods that are not tolerated while the bowel is still healing.

Therefore it is not recommended to just exclude certain foods and expect to achieve remission. You may still feel better and reduce the inflammation, but remission would be unlikely. The diet has to immediately follow EEN.

So, to answer your questions. Yes, it was easy to eliminate specific foods because I was on EEN for four months and very ill before that, so I was only able to slowly return to eating. From what I have read from others who have tried this approach I think the main problem is the rush to resume a normal diet. Dr. Hunter's approach must be viewed as a treatment and followed very carefully.

Therefore I very slowly added back foods (from earlier postings in this thread): "rice, chicken, well-cooked and peeled fruits and veggies--pears and carrots, soya milk, bananas, peas, potatoes, soya margarine, olive oil, egg whites, honey, stone fruits, white fish, rooibos tea, green tea (de-caf) and very small amounts of good quality chocolate with no dairy. It took me about 9 weeks to be able to eat all of these foods."

I spent at least four days only eating rice, then four more days adding only chicken, then four more days with adding only cooked pear, etc. I continued with EN to supplement until I had a full food only diet.

Yes, because I was adding back only one food at a time very slowly, I could usually tell when a food bothered me: diarrhea was the first sign and I would stop testing that food and try again later in the process. The reactions very in duration--but all within 2-4 days, except for grains. It took me three weeks to determine that I cannot tolerate cornmeal, and the same for oats. Gluten reactions are very quick--one day. Dairy is 24-48 hours. However, everyone is different.

I am sure that I have blathered on earlier in the thread about gluten cross-contamination, but I can't stress this enough. I was doing "ok" for almost a year, but still having a lot of symptoms of bloating, diarrhea and fatigue until I learned about gluten sensitivity and cross-contamination. One I eliminated the cross-contamination, I became much more well and I have remained so. As well, initially it would take several weeks for me to recover from accidentally consuming gluten and I would stop all other testing and sometimes need to take only EEN for a few days--now I recover in only one day without needing any EN.

It is a lot of trial and error-- but so worth it if you are able to be successful. I was very ill and unable to eat for a long time--so I was highly motivated. I think that is the only way to do it.

__________________
Diagnosed with IBD Sept. 2010
Enteral Nutrition induced remission in August 2011
Maintaining remission on Full Elimination Diet
01-07-2015, 06:09 PM   #62
ncman
 
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I've also tried the LOFFLEX diet, which initially was increasingly successful, got my calprotectin down to normal levels, then within three months my calprotectin tested at 1000+. So I've gone back to the start: two weeks on elemental, then lofflex, then reintroducing thought-to-be-safe foods. Again.

noah - are you eating wheat? or eating resistant starch? These could potentially be slow burners.

happy, Mattie, and others who have tried it, how did you manage the portion size element to the diet?

How many grams of fibre/fat are you eating per day?

Did your tolerance differ as to whether the inflammation was higher or less severe when you were doing the food introductions?

Also are any of you in full time work? If so, what sorts of things did you take for lunch?
01-07-2015, 07:20 PM   #63
happy
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ncman, I'll try to answer your questions but first let me say how sorry I am that you did not have success the first time around. How frustrating for you to have the inflammation return so quickly.

So, for me, just a quick review--I live in Canada and managed the program on my own with some advice from a forum member who is no longer active and from Dr. Hunter's book and website. As well, at the time, calprotectin tests were only available for research purposes where I live (they may still not be readily available in Alberta now), my bloodwork never showed the severity of my disease, and there was no other reliable testing method with which to correlate the severity of the inflammation other than my symptoms.

So, as to tolerance vs inflammation with the food re-introduction. I believe that continued inflammation was the reason why I needed to stay on the elemental diet for four months rather than two-three weeks. And it took about a year and a half to reintroduce the foods to develop the diet that I have now because when I would try a food that I was intolerant to the inflammation would return (milder of course), I would need the elemental diet again for a few days, then slowly I would resume eating again, and then even slower I would resume food testing. Also, eliminating a food that one is intolerant to is more difficult when it is something like wheat or dairy as these foods are in so many prepared foods and I was unwittingly being exposed to foods that I was intolerant to (such as crumbs on the cutting board). Once I got this figured out, the food testing went much smoother and I had fewer setbacks.

Now I rarely have problems and I believe that I do not have any inflammation anymore. When I do begin to have problems, I believe that it is just at the stage of the bowel flora being unhappy rather than actual inflammation. I trace back the likely food culprit, cut it out and carry-on without any problems. I believe that no inflammation equals less intolerance to me as I continue to add more foods and increase the fibre, fat and vegetable content in my diet.

I don't keep track of my fat and fibre amounts anymore, but for the first year and a half, they were very small amounts. I used Miralax occasionally to prevent constipation as I kept the fibre to a minimum--if not, then I was back to the big D. So quite a balancing act in the beginning. Too much fat and fibre will still cause me problems now.

I was unable to work when I was really ill and now I work from home. But when I travelled I brought along a very small rice cooker that I could also saute veggies and meat in the bottom of before adding the rice and water. I also used it to make amaranth porridge or quinoa. If I had been working in an office situation then, I would have used that or a small slow cooker to make my lunch. I also used the individual canned tuna and plain rice in the microwave bags and mixed them after heating the rice. I brought along shredded veggies that would cook from just the heat of the rice and added salad dressing that I could tolerate. Now I freeze most of my meals when travelling and stop at a gas station to zap them in the microwave.

I am not sure what you mean about the portion size of the diet. A nutritionist should help you figure out the amount of elemental diet you need to consume, then when you re-introduce food, any shortfall should be made up with the elemental diet still until you are getting complete nutrition from food. And any time you need to stop testing because you have become ill again from a new food, you should use the elemental diet again until symptom-free.

The most difficult part is to not be in a rush. Good luck. I hope you are completely successful this time.
01-10-2015, 03:32 PM   #64
ncman
 
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happy, thanks for replying. I mean, I thought I did everything right, and it worked but then didn't. So I was obviously doing something wrong.

If I understand you correctly, you transitioned off elemental diet slowly whilst adding foods for 4 months?

Portion Size:

No, I was talking in relation to the amounts of food. I had guidance from a dietitian as to how much elemental to consume - 8-10/day, although I could generally manage about 6-7.

1. How much fat would you say you could tolerate? When you say small amounts, could you give an example of what small is?
- And ditto with fibre.
- And ditto with vegetables.

2. And when you gradually increased these, how gradual did you do it? Did you test a higher portion size for four days to see if it was problematic?

3. How much fat would cause you problems now? And ditto with fibre, veg.

I'm not a big eater. But because you're not eating as normal, you're so restricted, so I was having more of known foods to be safe. Without monitoring fat/fibre content, even of safe lofflex foods.

So I have no idea whether it was the food or the amount that was causing me a problem.

Do you understand the immunology side of this? Because if CD reacts to food, then why would eating a lot of a food known/thought to be safe cause a problem? This is what I thought the first time around.

Constipation:

Like you, this time around I'm also suffering from constipation - god, isn't it awful?! I presumed this is caused by too little fibre, so was forced to have 3 portions of veg at each meal.I've also used golden linseed as occasionally too.

Did the constipation ease when you'd included a better amound of fibre in your diet? When was the turning point for 'normal' BMs ?

Away from home:

The reason I ask was because no one told me of the "cold rice" rule. So I was taking cold rice, cold potato, cold pasta (after I'd tested and found not to be a problem) with me.

And because my work canteen has a reputation for not operating the best of food hygiene policies. As well as anecdotally hearing people getting stomach upsets, I'd taken a late lunch one day and overheard their meeting where they were saying how they'd recently fudged a inspection, letting uncooked meat juices flow onto cooked meat, and other stuff, and it really doesn't give me any confidence! So I have to rely on what I bring. As I've nowhere to put a portable cooker, I was just after ideas!

As I'm soon to be testing chocolate...I was thinking of using dark chocolate. How many grams did you do in a serving?
01-10-2015, 05:28 PM   #65
happy
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ncman
I will respond with several smaller post as I have the time. I will also dig out my food diary from that time to give you more accurate info.

No, I remained on EEN for four months as every time I tried to eat food I relapsed right away. I copied some info that I wrote at the beginning of this thread about reintroducing food: "The following is my progression of food testing: rice, chicken, well-cooked and peeled fruits and veggies--pears and carrots, soya milk, bananas, peas, potatoes, soya margarine, olive oil, egg whites, honey, stone fruits, white fish, rooibos tea, green tea (de-caf) and very small amounts of good quality chocolate with no dairy. It took me about 9 weeks to be able to eat all of these foods."

After the initial four months of EEN I first resumed eating using the LOFFLEX, but not the full elimination diet. Unfortunately after initial success, I relapsed within six weeks. I went back on EEN for two weeks and then did the very slow reintroduction of foods on the full elimination diet and that process took 9 weeks as described in the above quote.

Constipation- I used Miralax periodically at the beginning of food reintroduction until I got the amount of food/fibre thing sorted out. Miralax seemed to be the only medication that would not interfere with the food reintroduction. Also I drank lots of water.
01-18-2015, 04:41 PM   #66
happy
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Ok. So for fats I started with rice bran oil- 1/2 tsp once a day, then twice a day, then three times a day over the course of three days so I was eating 1 and 1/2 tsp. Same amount three times a day on day four of fat testing and then I tried olive oil the same way. It probably took me a year to work up from those amounts to the 6 teaspoons (30 mls) that I am eating now. Now for fats I eat the following: olive oil, canola oil (rarely), almond butter, vegan 'butter' (Earth Balance Brands), avocadoes, flax seed. I count the last two as fats and eat them in small amounts because of their fat and fibre content.

For fibre, I didn't keep track of the amount of fibre when food testing, but now I try not to eat a serving of anything that has more than 5gms of fibre in it; and preferably lower. The recommended amount for females of my age in my community is 21gms. I estimate that I come in well below that now and if I get close to it I have very loose stools. It is a real balancing act with the amount of fibre--I suggest researching soluble and insoluble fibre and make sure that you food test foods with both types of fibre to help with the constipation.

It is often hard to tell if the problem is too much fat or too much fibre--now I will get steatorrhea--oily diarrhea-- if I eat too much fat.

I think listing items my food diary may help to give an idea of the food testing process:

Day 1- 5 tablespoons of watery cooked white rice spread throughout the day.

Day 2-2 full plain white rice cakes spread throughout the day.

Day 3-1/8 cup cooked brown rice cereal (more fibre than the white rice), 2 Tablespoon poached chicken, 1 rice cake, 2 Tablespoons cooked white rice.

Day 4 -I increased the amounts of chicken and rice.

Day 5- I added cooked pear puree ( baby food puree) 2 Tbsp throughout the day.

Day 6-8- Increased amounts of all foods.

Day 9- Added cooked pureed carrots ( baby food). 2 Tbsp throughout the day.

Day 10-12- Increased amounts of all foods.

And I just carried on like this. I see that I should have stayed on just rice for four days at the beginning, but I remember that I had developed iron deficiency and the docs wanted me to get on some protein as soon as possible.

Just a reminder that I was making up the remainder of my calories with the EN until I was getting all my calories from food, so I wasn't eating excessive amounts of veggies/fat/fibre.

I eat probably eat 3-5 five servings of vegetables a day now- mostly cooked.

The immunology of the gut--ha, ha-- big question. Here is a really good study with a similar diet and process ( not proceeded by EN though) that they did at the University of Massachusetts: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896778/ If you scroll down to the heading "The diet", they describe what they think is the process for how these diets work to help change the bowel flora which then decreases the inflammation.

Try to be kinder to yourself. You didn't necessarily do anything wrong on the diet-- it does not work for everyone. however, having said that, because you initially did have such good results it may be worth doing it again more slowly with the full elimination process, rather than the LOFFLEX, while supplementing with the EN for a longer period of time.

Please ask me any more questions that you have--sorry the answers aren't as straight- forward as you may like.
01-18-2015, 06:22 PM   #67
ncman
 
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Wow, your food testing must have taken ages, all I can say is well done for perservering with it for so long. How did you first hear about the lofflex method?

Ok, it's interesting what you say about fat/fibre, and what happens when you have too much. It's something I'd overlooked. I currently seem to be settled on the lofflex foods, and I'm currently retesting foods which I thought to be safe. It's just doing it v.carefully and watching portions to see there is no slip up.

I was going through the dairy intorductions and seem to have had a reaction, my joints have swollen slightly, so I'm just waiting and hoping this will settle before moving on. I've also seem to have caught the flu which'll only complicate things.

I disagree with you on it not working for everyone - surely we all have the same problem, so should be able to sort it in the same way.
01-18-2015, 06:34 PM   #68
happy
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It has been so long that I can no longer tell you how I heard about the LOFFLEX diet. Sorry to hear about the dairy reaction-- I get swollen lymph nodes and wrist joints with gluten reactions. Do take it easy while you wait for this reaction to resolve--go slowly with the reintroductions again and leave dairy until the very end of your testing again.

I hope you feel better from the flu soon.
02-14-2015, 11:03 AM   #69
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Dear Happy, i have been reading through this entire thread and had to post. I am actually a Professor Hunter patient. I started seeing him three years ago when my consultant wanted to start me on Infliximab and I said I wanted to try Lofflex first.

Within 3 months all my bloods were normal - my CRP was 2. I then had a couple of great years on the diet. Last year my Mother who lives with us got very ill and for most of the year I nursed her and she finally died in November. As the year progressed I also started to get ill. I couldn't understand it and pared back my diet until I was living off fish and rice. I ended up with two emergency admissions to hospital and on the Inflixmab (which didn't work). I have been in hospital again a lot during January, but am now making good progress on Modulen. I don't mind at all and hope to stay on it for 10 weeks to let everything settle down then I will go through the elimination diet but of course I already have two years of what works for me and what doesn't so I won't find the process too difficult and just hope I can get back to where I was.

BUT the real point of this was what unraveled the success I was having and I am absolutely sure the one factor I ignored was stress. It was a hugely stressful year, I got totally exhausted and was completely over-stretched. I hadn't previously ever thought that stress impacted that much, but I have had to seriously re-think how I feel about this. On my last admittance to hospital, which was very scary, I completely broke down - I had had 20 years of it, several surgeries and felt I just couldn't go. However with the help of close friends, a good medical team and some counselling I can now see that I was at the end of my tether. I do look back on the past year or so and think what was I doing and I am resolving to change my ways, stop being so driven, relax more and generally be nice to myself. I only have a small amount of gut left and they were threatening to take it away, leaving me on the transplant list and TPN!

I am so pleased you are enjoying the success I had and hope to go back to. I do hope you can be more sensible than I was and be aware that external influences can also really impact. John Hunter retires in April this year. At the moment I don't know if anyone is going to continue his fantastic work, which will be a loss. However, my hospital in Gloucestershire, having seen my success is now much more willing to work with me around diet - hence my current Modulen program. The longer I take it the more I am able to tolerate it and only have 2 visits to the loo a day - albeit it is still a bit liquid in and out. I would have been keen to also test Vivonex, for the reason you say about the make up of the product, but I have spoken to Nestle and they won't sell it in the UK. Never mind, the Modulen is doing the job. The only fly in the ointment is a possible stricture, but we don't know for certain and I am hoping it was caused by inflammation, not scar tissue and will diminish as I get better. Yesterday as a precaution I also started Humira, but as I have yet to find a drug that does anything (other than steroids) I am not holding my breath. It worries me sometimes that we all have to do so much, become such expert patients, stay so alert and vigilant. What happens to the poor soles who don't have the resources for all this?

Anyway, just wanted to say hi. Thanks for all your postings, they have cheered me. Best Liz
02-14-2015, 11:45 AM   #70
happy
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Nice to hear from you Liz. Wow, you sure have had a challenging journey on your road to good health! It was great to read your story and I agree that stress does influence one's health especially when one has a chronic illness.

I too have been struggling recently and my symptoms started when several months of severe family related stress was relieved as well. I am really struggling with fat absorption and because of this I have developed a Vitamin A deficiency. I am having a few investigations, but I don't think that anything of significance will turn up. I am quite surprised that I have to revamp my diet again at this stage! And I think that I confuse my doctors as I am overweight again while being malnourished--what a paradox.

May you soon be feeling well again. Please tell John Hunter about my success if you see him. I am so grateful to him for pursuing his nutritional research during his career. I am sure that he will be missed.

I am sorry to hear that you have the added worry about scar tissue and the possibility of more surgeries--that doesn't help the stress levels! Good luck with your treatment--let us know how it is going.
02-04-2017, 06:12 AM   #71
ncman
 
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I thought it would be good to update you all on my progress, as I feel there are many who have tried this treatment but havenít always reported back.

Anyway, to summarise for those who havenít read the whole thread, I tried the diet, flared up (as I continued to eat the wrong food and didnít pick up on a slow-burning reaction), and then went back to square 1 and started the elemental drinks and elimination diet from scratch again. This diet has kept my inflammation under control for almost 2 years now, with no other pharmacological intervention.

What can I eat? It is still basically LOFFLEX. I havenít veered too far from that list, and the rules around fat/fibre/fructose/r.starch.

Thatís where I am at the minute. I will be testing butter (again!) in the next week as I tried to increase the amount of fat I eat (to 25g/day), and ended up with an episode of loose motion suggesting a reaction. I was also sitting exams at that time so wanted to know if stress played a factor. If thatís ok, then next on the list is sardines, as it is also a high fat fish.

Happy, how are you doing? I hope youíre still well.
02-05-2017, 05:18 PM   #72
happy
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ncman,
Thank you for updating the thread--so great to hear that you are mostly well.

I am doing very well--thank you for asking.

I noticed that when I last updated 2 years ago I had a Vitamin A deficiency and I was still struggling with fat absorption. These problems are much better now. I have managed to increase my consumption of both veggies (still mostly cooked) and fats slowly over the last two years. I rarely have issues with either food group now. I am still careful with fruits, especially raw. I still limit fat and fibre, but I am probably in the more normal range of consumption now.

There have been no changes to my diet as to what I can and cannot eat. I
I still am overweight--but I finally feel as though I can begin to work on losing weight without jeopardizing my 'health' from an IBD perspective. I am so grateful that I have had the opportunity to use this method as my treatment.

May all who try this method of treatment be successful.
03-31-2017, 05:10 PM   #73
ncman
 
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Happy - Have you found the longer you've been in remission it takes longer for food reactions to show themselves? Or have you found that 4 days is still enough, even after a few years?
04-13-2017, 01:33 PM   #74
happy
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Hi ncman,
I have found that gluten reactions happen within 24-48 hours. Dairy reactions happen within 4-24 hours. Other grain reactions can take longer--it took me three weeks to figure out that gluten-free oats were giving me a reaction. Certainly by 48 hours, I usually know if I have ingested something I react to.

I rarely react now--if I do it is from eating away from home and consuming a food I react to without knowing that I have consumed it. This is usually a gluten cross-contamination problem such as ''roasted red potatoes" that were actually put in the deep-fat fryer where gluten-containing foods are also deep-fried. Other culprits are foods that have hidden casein, a dairy protein. Margarine, some soy milks, ghee and many unexpected processed fast foods have casein in them. Sometimes I react just because the food is too fatty--so I eat GF/DF sauces in moderation.

I am not actually food testing anymore although I may do so in the future. I am quite well in my digestive system at present although I still do not consume enough fruits and veggies. My current diet has no gluten, no oats (even gluten-free oats) no corn protein (no cornmeal, no fresh corn--fat and starch are ok), no dairy, no red meats, no beets. Cooked fruits and veggies are ok; I still eat limited raw fruits and veggies. Fat and fibre are ok with moderate amounts now. I am still trying to increase the amounts of fruits and veggies. I live as though I have celiac disease--this keeps me healthy.

When eating away from home I plan for it carefully and I don't eat at restaurants/homes where I am not sure I can eat safely. I bring my own food to such places. This is just my normal lifestyle now--everyone is used to it. I may get asked questions that I am happy to answer, but it is no big deal anymore.

I am branching out and taking some cooking classes--GF breadmaking, Vegan Indian Food--but again, I don't eat the samples if I don't trust the source. And I am learning new recipes to serve at home to my family and to guests. Everyone knows there will be no gluten eaten at my home--they still come over to eat my creations!

I hope you are doing well! Thanks for asking about me.
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