Elemental and Elimination Success

This post is all about the success!:dance:

I will summarize what my problems were before this treatment success, my previous attempts with this treatment, and some of the problems I had along the way in a later post.

I resumed a full liquid elemental diet (VivonexPlus) for two weeks in July 2011 after a relapse of my symptoms. I only consumed the formula and water. After the two weeks, I started eating following a full elimination diet. I used the book, Inflammatory Bowel Disease: The Essential Guide to Controlling Crohn's Disease, Colitis and other IBD's by Professor John Hunter and information on Dr. Hunter's website: http://www.crohns.org.uk to help me.

Basically, the premise of the treatment is that you consume the elemental liquid nutrition until remission is induced. (This is a very important step. Some people try to obtain remission just by following an elimination diet. I was unable to find any research that supported the idea that remission could be obtained or maintained with just an elimination diet.)The theory is that the elemental diet somehow alters the bowel flora so that the inflammatory process does not have the flora that it prefers to feed on. You maintain the remission by testing individual foods to see if they cause any symptoms. Bowel symptoms are assumed to be caused by the current food being tested altering the bowel bowel flora in a negative manner. Stopping the food and consuming the liquid elemental diet again until the symptoms have settled and eliminating the offending food from your diet while eating only foods that have been tested to be agreeable to your bowel is how remission is maintained on the elimination diet.

I resumed eating food in August 2011. I started eating food very slowly. 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.

I have since added quinoa and amaranth, other fish and seafood, tofu, almond butter, orange juice, asparagus, herbs (cooked) some spices, sugar, brown rice syrup and molasses. I am currently retesting cornstarch (it is in so many foods that I want to be sure that I can't tolerate it.)

I cannot tolerate milk products of any kind, including in medications( I knew that I was lactose intolerant before but I have learned that whey and casein also bother me). It has taken me a long time to be able to tolerate very much fat. I still limit the number of fruits and veggies that I eat, but I am now able to tolerate some of them raw and the extra fibre of their skins. I still limit the amount of fibre I consume as well.

I have not tested any other grains, legumes, nuts or seeds, as yet. I plan to test more fruits and veggies first, before I branch out to grains and legumes.

I have researched food families to help me test foods that I was more likely to have success with. For example, I chose to test almond butter first because it is not a legume (like peanuts are) and because it is related to the Plum Family, which has foods that I tolerate.

I am feeling the best that I have in almost two years. I still need to build up my strength and endurance, but my energy levels are improving daily. It is easier for me to travel and go out with my family due to the variety of foods that I can now eat and also because I can count on feeling well, without digestive issues to hold me back.

If anyone has questions about this process and thinks that I might be able to help, please ask me for specific information. However, I am not interested in getting into a medication vs. diet debate.

May we all discover the foods that we can enjoy because we can tolerate them well! :ybiggrin:

Thanks so much for posting happy. I will follow your journey with interest and all the while learning along the way.

Dusty. xxx

Congratulations!!

Were you supervised by a GI or nutritionist or did you find your own way?

Have you previously tried other medications or are you recently diagnosed.

Would be very interesting for you to keep us posted with how you're getting on!

Paul

Hi happy :bigwave: I am pleased things are going so well for you and I admire your dedication to looking at things carefully and not rushing into trying anything and everything all at once. Please do keep us posted on how things go

Wow! What a great success story. And you have some diligence. I give you a lot of credit, but it certainly seems like it has paid off.

I hope you continue to feel so terrific!

Congratulations Happy!!! I'm so glad you're feeling well!! :rosette1:

Thank you for your responses. :smile:

@PaulPhoenix-- I chose this treatment regime myself, but I consulted a dietician and a hospital pharmacist for advice regarding additional liquid vitamins during this process. The medications that I have tried before are antibiotics--Flagyl and Cipro. I was diagnosed Sept. 2010; my symptoms started in Mar/April 2010.

Previous attempts--A long process

This is a summary of the entire process of following the liquid enteral nutrition.

I started a liquid diet of Ensure only in Dec. 2010 for three weeks. I found that I could not tolerate the Ensure as it worsened the symptoms of gas, bloating and diarrhea. I now know that all flavours of Ensure have milk ingredients (which I don't tolerate) and I suspect that the corn syrup is also something that I don't tolerate. I moved on to VivonexPlus (unflavoured) after researching what formula was made for IBD-type problems and was the least likely to have ingredients that I might be intolerant to.

I started the VivonexPlus formula only in late Dec. 2010. I continued on the formula until the end of April 2011. I did try several times to start eating again during that time, however my symptoms would soon return each time, so I would resume taking the enteral nutrition. My symptoms seemed to gone by the end of April and I had 'clean' scopes then so I began eating again following the LOFFLEX diet--low fat, low fibre, partial elimination diet.

I did well for about six weeks and them my symptoms starting coming back again. I decided to resume taking the enteral nutrition again at the end of July 2011 and then to eat following the more difficult full elimination diet once my symptoms were gone again. I described this process at the beginning of this post.

Problems along the way--some serious

It takes a while for the effects of the EN to work.

When I started the Ensure in Dec. 2010, I had already been quite ill the previous three months and had lost 25-30 pounds (however, I was overweight before I became ill). I lost another 10 pounds on the enteral nutrition before my weight loss slowed at the end of Jan. 2011. So it took 2 months for the EN to affect my weight.

When I relapsed in June/July 2011, I lost another 15 pounds before my weight stabilized again on the EN, after only two weeks this time. I have lost 55 pounds total and I am maintaining a healthy weight now while eating an only food diet--no EN.

Because of how ill I was before I started the EN, and because it took awhile for the EN to help, I developed some other complications. I developed blind spots (cotton wool) in both of my eyes in Feb. 2011. The opthamologist thinks that they were caused from severe malnutrition. He said that there is a lag time from how severely ill a person is to when problems show up in the blood work, but that the blood vessels in the eyes are very sensitive to changes in the body and will show symptoms first. The blind spots were due to anemia. I am very fortunate that they resolved by the end of April 2011 (while I was on the EN!). Because of some other problems that I am having unrelated to the IBD, I had a brain scan done in Nov. 2011. I have several lesions in my frontal lobe that may also be due to the malnutrition from then. (It explains why I was having such trouble with my memory, thinking and concentrating then--these things are getting better all the time.) The brain lesions will take longer to resolve, if at all. This will be rechecked in April 2012.

The EN can cause constipation both when starting it and when stopping it. Because I was trying to follow either the LOFFLEX or full elimination diet after the EN diet, I didn't want to consume something that might help the constipation but that would interfere with the diet. So, I used Lax-A-Day, which contains only PEG 3350, occasionally. Despite this, because of severe constipation when I resumed eating, I needed to dis-impact myself more than once. (Don't ask, please!) People might think this would be a relief from diarrhea--trust me, it is not.

EN is very expensive. Nine days worth of formula for me was $340.00 or about $38.00 a day. (This was a discounted price from my pharmacy). I wouldn't spend that much feeding myself for a day at home, so it definitely was an extra expense for me. (My drug plan limit is $500.00 per year.) Most children and adults would consume more than I did, so the cost would be more. However, I would be paying for the medications myself as well.

If others choose EN followed by the LOFFLEX or Full Elimination diet as their treatment, please know that the benefits are worth it, but like any other treatment there are challenges along the way.

Why I chose EN

My symptoms started Mar/April 2010. Prior to this I had diagnosed myself with lactose intolerance and Irritable Bowel Syndrome. Up until the summer of 2009, I managed well by avoiding dairy products and understanding that sometimes I would have cramping, loose stools and bloating during very stressful times in my life.

I started to have more loose stool during the summer of 2009, for no apparent reason. Then over a weekend in Mar/Apr 2010, I developed acute symptoms of diarrhea, RLQ pain, bloating, blood and mucus, mild swelling in my ankles and shins, a mild fever and night sweating. However, nobody else in my family became ill (not that I was wishing it on them!). Soon a cycle started of me feeling better for a few weeks followed by a return of the symptoms. I would lose some weight, then gain most of it back, then lose it again when the symptoms returned. Then I started getting pain and pressure in my pelvis at night with nighttime bowel movements. :mad2:

In Sept. 2010 a colonoscopy showed "twenty to thirty ulcers" in my terminal ileum. I was diagnosed with IBD--possible Crohn's. The pathology report came back normal--with an explanation from my doctor stating that, because of the skip lesions, it is hard to biopsy the diseased places. A small bowel follow-through showed the same lesions. An ultrasound said "not crohn's"--I was then diagnosed with Ulcerative Colitis despite not having any disease in my colon. I was offered Asacol initially, but chose not to take it as I was unsure of my diagnosis. I was not offered prednisone, but I would not have taken it due to previous experience with it for asthma. I agreed to take Flagyl and Cipro instead, in the belief that the sudden onset of my symptoms could have been precipitated by an infection. However, the antibiotics didn't help.

By December I seemed to be on my own. I had been referred to a GI specialist, but I was told to expect a wait of six months for an appointment. While I researched my options I tried a low residue diet, which did slow the diarrhea, but did not help the other symptoms. Through my research I realized that, in some places, EN is used for IBD to induce remission. I decided that while I was waiting for for assessment and treatment, EN was something that I could try because I was desperate by then to find a way to get nutrition in my body as I was tolerating only 400-600 calories of food daily. I think that because I was overweight to begin with, my doctor did not realize the urgency of my situation and I believe that if I had not done EN on my own, I would have ended up in the hospital, likely on TPN, in January 2011. :ywow:

I have had many experiences with side effects from medications and I have had one type of cancer and a prophylactic treatment for another type that is common in my family, so I knew that no matter what type of IBD it was, I needed to find a treatment that had fewer risks than some of the meds, if possible.

As you can see from the rest of my post, it was not a simple nor an easy journey with EN and diet. However, I am glad that I gave it my best effort and stuck with it. I started this thread so that other people would have more information about the success and difficulty with EN followed by diet, especially if their health professionals are not familiar with it as a treatment option.

I am grateful to be eating food and I am surprised at how well I can eat and how creative I can be with the limited diet that I still have. I am becoming well, with normal bowel habits, and improving energy and activity levels.

May we all become well on our chosen treatment paths.

Thanks for reading and posting. :rosette1:

Thanks for your story! You've certainly earned your remission. I've read in the same book that Crohns's can burn itself out after a number of years of elimination. Hopefully this is true.

I'm hoping to emulate your success and, this evening, just got off the phone with a dietician at our hospital who's ordering me some samples of Elemental 28 so I can choose the most palatable flavour. It was tough to get my GI and nurse to agree to me even trying it. They felt I would just become sick again after completing the diet. It's weird. Almost like there's some big conspiracy going on?!?! Anyway, I wanted to try it before going on to biologicals or more steroids.

Thanks again for sharing.

Hi PaulPhoenix,
Any chance that you could make a trip to Addenbrooke's Hospital in Cambridge or at least call their dietary department? That is the hospital where the research was done that Dr. Hunter talks about in his book. One of the forum member's here (who is no longer active) got her treatment with EN and the full elimination diet there. After she moved away from the area she still made the trek to that hospital to get their advice on any problems that she was having. She was closely monitored and adjustments were made quickly by phone.

I wish you great success on your journey with Elemental Nutrition and the elimination diet. :goodluck:

Happy: i may well have to get them to help. I'll see how far the hospital dieticians will go with me. Exciting times though. I need to decide whether to stop my immunomodulator (Aza) too. Ah well. Things always feel better when you have options...

PaulPhoenix,
I don't have experience with the medications, but all the research that I have read states that you can remain on the meds with the EN. Once you are firmly in remission, then you can decide whether to stop your meds and carry-on with full EN and then either the LOFFLEX or full elimination diet, or continue with partial EN with a regular diet.

If you don't think that the meds are causing problems for you, it might be a good idea to just change one thing at a time--if you stop your meds suddenly, you might go into a flare that takes awhile to settle down, so you might think that the EN is not working and get discouraged.

However you choose to use the EN, I hope that it is a successful treatment choice for you. Please continue to post, so we know how you are doing.

Hi,

Firstly congratulations and thanks for sharing. Very interesting story and further affirmation of the value of the Prof. Hunter/Addenbrookes approach. Unfortunately I do not live in England but I have had some real success in following a low residue diet.

Basically I realised that every time I had a "purge" before a colonoscopy (with 3 days very low residue diet beforehand) I was better after the Colonoscopy for a while. So last time I stuck to the low residue diet afterwards and only slowly reintroduced specific foods. Most of the foods you have reintroduced (excepting peas) are on my diet too. I also drink a lot of fruit juices to replace the whole fruit I used to eat and also tons of porridge, manuka honey and vitamin supplements.

I can maintain remission with Pentasa daily and - only when necessary - a five day low dose course of Prednisone (they wanted me to take Pred low dose permanently but I refused). Never more than once per month and preferably not at all.

I am convinced that diet is a key to maintaining remission.

The big question is has anybody found that secondary symptoms (arthritis etc) improve also as a consequence of the Addenbrookes regime? These are ther ones still bugging me and causing me to resort to occasional Pred.?

Paul Cronk,
I am glad to hear that you are managing to keep most of your symptoms under control with your treatment regime. Congratulations!

As for your question about the secondary symptoms--I have no information for you about this. I don't have any EIM (Extra-Intestinal Manifestations). The problem that I developed with my eyes was related to malnutrition, not inflammation--so, I'm sorry but that is a question that I have not researched.

You could ask people on the EIM sub-forum page on this forum site or start a new thread on the EN thread under the Treatment sub-forum to get some response.

May you have continued success with your health.

Hi happy. I am considering beginning th EN diet. I was wondering what you thought about making my own nutritional supplements with fresh juices and protein supplements..? I am going to try to find the book by Dr. Hunter, but in the meantime, I need something now and am afraid of the highly processed nature of the drinks like boost, ensure, etc... I was curious if you had an opinion on the matter. I recently posted my story in the specified forum if you are interested in it.
Thank you so much for your post, I was beginning to think I was one of the only ones not wanting to take medications first. I hope all is still well for you

calmcolon11,
:sorry:about the delay in responding. I went looking for a resource for you and then never got back to posting...

First, let me say that it is very important that you are followed by a doctor/nutritionist while on a liquid diet. It is very easy to develop nutritional deficiencies while on a specialized diet.

Second, from your thread in the 'Your Story' forum, I wasn't sure if you were on any meds now. If you are, I would continue taking them while starting the EN. Then later, if you get to remission, you and your doctor can decide if you can go off of them.

Third, I agree with what David said in his post on your thread. IBD can be silently wreaking havoc if left untreated. Be sure to be very responsible with any new treatment that you decide to try, just as you would be if it were a prescribed medication.

Now on to the specifics of your question. Although I did start with the commercial prepared drinks like Ensure, I was also concerned about their ingredients. I also was kind of desperate, so a trial of those drinks bought me some time. Some people do very well on them; however, due to the milk ingredients, they bothered me. These drinks are a good place to start, though, and relatively inexpensive.

If you search the forum, you will find people who 'mix' their own formula, or rely on some kind of protein shake, or who 'juice'. I think for a few days, or as a supplement, these types of drinks are fine. However, if you are looking for something because you don't feel that you can eat at all, or for a long-term solution that could possibly bring on remission and you don't want to use the Ensure-type products, then I would recommend using a prescribed elemental formula like Elemental 028, VivonexPlus or Modulen. These types of EN have been formulated in a way to make the nutrients very easy to absorb and have the proper balance of sugars (what carbs get broken down into), fats and proteins that are easier for the body to digest, plus most of the necessary vitamins and minerals. (You still may need to supplement with a liquid vitamins and minerals-that's why you need a health professional to help you.) Any of the research that I have read that discusses remission with liquid diets always use these prescribed forms of elemental nutrition. Unfortunately, they are very expensive so you might need to be on some type of health plan or assistance to get them.

If you still think that you want to make your own formula, the book, Beat Crohn's: Getting to Remission with Enteral Nutrition by Margaret A. Oppenheimer, has a chapter on preparing your own EN. The book is well-researched despite the cartoon cover.

:goodluck: with your treatment choice and may you soon be feeling better.

P.S. I am well-still having some fatigue issues. Fatigue was better and now worse again, just waiting for blood results for iron deficiency again. Thanks for asking.

Thank you foryour thorough response. I can't handle the boost drinks, that it is for sure. I am currently trying a program called Ideal Protein. I am under observation of the doctor who recommended it and getting bloodwork tomorrow or the next day. I have been doing it for 3 days and feel MUCH better. I am able to eat with the help of some enzymes called "DGST". He also is making I rake calcium, magnesium, potassium, fish oil, and a multivitamin to make sure that I am not missing anything. The diet does have"pre-digested" type of protein in them that is easier for me to absorb. It is a low carb diet (no more than 40carbs a day). It was designed for weight loss, but i just add calories by eating and extra ideal protein food or an extra helping of meat and veggies. I am keeping a close eye on my BMs and writing down everything. I am hoping it continues and my follow-up colonoscopy will be much better than my last. We shall see. Thank you again

Well that is an interesting treatment program. Thanks for sharing it with us. Please do continue to let us know how it is working for you.

It is great to hear that you are being supervised medically and that you are feeling better. Long may it last!

I am food testing "greens" this week. Wish me luck. Anyone care to join me in eating cooked lettuce?

Good luck happy!...:goodluck:

I will join you but I have unfair advantage!

Dusty. xxx

Thanks Dusty.
I also meant to post that I ate a real sandwich yesterday: 2 slices of fresh rice bread with sliced chicken, sliced tomato, non-dairy buttery spread and lettuce! Heaven! It tasted so yummy and I could actually bite into it. One gets tired of cooked rice, cooked quinoa, etc.

I am so fortunate to be eating so well--I have actually gained 5 pounds recently. I do not need to gain anymore!

That's fantastic happy, good luck!

I'll pass on the cooked lettuce though, sorry

Thanks David. Chicken with sprouted brown rice, cooked carrots, cilantro and cooked lettuce for dinner tonight. So far, no problems!

Congrats Happy!!! Sounds like its going well! Hope it continues and continues!

Happy, how long do you test a single new addition before you deem it safe?

Thanks, Tesscorm.

David, in the beginning I would test a new food for about four days, but I found that it was too soon and I was having too many symptoms. So then I went up to a week for a new food. I have not tested wheat yet, but I plan to give that about three weeks before I test anything else.

I have found the slower the better, and I have more success this way. I no longer need to resume formula after symptoms develop; I just go back to eating the foods prior to the new one. I also start with small amounts of a cooked, peeled, no bits, version of a new fruit or vegetable, before trying it raw. I still only eat small amounts of a few raw fruits and veggies.

Anyway, I rarely develop symptoms on new foods now! :biggrin:

One year of remission! More later.

That's amazing happy!

:dance:

*sits staring at the computer waiting for "more"*

Well done happy!!! :ybiggrin:

congrats happy...feels good to read your sucess story.

@PaulPhoenix

can you tell us more about crohn's burning itself out after few years of remission..never heard of it but thats sounds interesting. I am currently in remission for almost a year and this statement of yours excites me.

An update:
Mostly I continue to improve. I recently have developed some increase in fatigue with a corresponding drop in iron levels, but no signs of bleeding visually or on testing, or any other symptoms. I stopped iron shots months ago, so I probably just still need them.

I recently managed a trip to Mexico and I was able to follow my limited diet! I continue to become more active, however my recovery has taken far longer than I ever expected. (It is not just the active disease process that I have needed to recover from--I have also needed to recover from the severe malnutrition and the severe disc protrusions that were caused from prolonged illness.)

I am still food testing--it is a long process.

I cannot tolerate dairy products, wheat, gluten, oats, fresh corn, cornmeal, red meat, pork, and brassica vegetables. I eat mostly cooked fruits and vegetables. I tolerate almonds but I haven't tested other nuts. Because of my limited diet it is still a challenge to eat out and to travel, however I am gradually learning how to do this successfully.

I use a lot of resources from people with food allergies. Whenever I begin to get frustrated with the restrictions of my diet (which is my own treatment choice) I think about the many parents coping with children with multiple food allergies whose reactions can be fatal. I am humbled by the parents dedication to sharing their resources about keeping their children healthy while trying to live a 'normal' life.

I have also just passed through a very stressful eight months (due to some family issues) without a relapse! So, I still consider myself firmly in remission. I do still take some supplementation of vitamins, minerals and iron.

I am aware that many on this forum are currently unwell--I remember my time of acute and prolonged illness and could not imagine a time in the future when I would be well. May you continue to have hope for a healthy future-- however that may be for you.

I am blessed--may you be as well. :hug:

Thank you so much for the update happy.

It is so good to hear that things are still going well for you and with all the effort you are putting in you are staying on top of things and travelling! Well done, you are such an inspiration.

:mademyday:

Dusty. xxx

That's amazing that you were able to stick to your diet on a trip to Mexico! Wow!

You mention the low iron levels. What sources of dietary iron are you currently taking?

Your ability to stick to your diet is inspiring

Continued success to you!

Thank you for your kind remarks Dusty and David.

David, foods I eat with good levels of iron: chicken, fish, amaranth, almonds, chick peas, lentils, soy milk, and a variety of vegetables. I do drink tea--green, decaf and herbal and I don't eat much citrus fruit. The tannins interfere with absorption and Vit C helps absorption. So, I'm cutting back my tea consumption and adding lemon to it when I do drink it. I've also started adding molasses to my amaranth porridge.

I'll post again when I get my blood levels done again.

Well done happy. Keep it up!

sid: just noticed I didn't reply to your request - really sorry. I just missed it! It was a statement in Prof John Hunter's book about treating Crohn's with EN and a reintroduction diet. At least that's how I remember it!

The elimination diet definately works for me. I continue to avoid all foods that cause a flare. After a while a person can very easily determine which foods or liquids cause flareups. And you have to decide do you want to get sick again by eating something like Milk, coffee, icecream, orange juice, greasy & fatty foods, that you know you had problems the last time, after eating them.

I also drink 1/4 cup, 99% Aloe Vera Juice 2 times day when I start having problems & eventually the problems go away. Along with a good multi & an Enteric coated fish oil. I believe the Aloe is a key factor in my well being, since I do not use any prescription meds.

Happy, Glad to hear that you are doing well on that plan.
Has anyone here tried baby food in the jars during a flareup ? It really does help if you cant tolerate any milk products. Milk is a big instigator in causing crohns to flare. There are studies showing that milk has a certain bacteria that can cause digestive problems.

Hi I have just joined. It is so good to read these posts as I am just setting off down this road. I posted already in the diet section that I have just started Elemental 028 Extra liquid, (finding it tastes fine,I think they improved it) on my 4th day of 6-8 weeks then hope to go on to a combo of SCD diet, but eliminating dairy and pulses and incorporating fodmap suggestions and re introducing more things gradually using the elimination diet method.

My consultant wanted me to go on azathioprine but has allowed me a while to try this route with the help of the in clinic dietician who is very supportive and optimistic knew about Dr Hunters approach at Cambridge. She wants me to stay on elemental so long to heal the mucosal lining making me more tolerant to food when I start eating again. My GP thinks it won't work and I will def need to go on meds. and only reluctantly prescribed the drinks as they are very expensive. About £5 a carton and I drink 9 a day!

My own research suggested that the Elemental drinks route is clinically proven to bring you into remission after 2-3 weeks, staying in remission with diet is not yet proven in a randomised trial but with lots of small trial and anecdotal evidence it can work. So it was great to read happy's story. If the drinks work the SCD should suit me as they work on the same principles of starving the bad bugs that trigger flares. (I think!)

The Medscape review of trials and literature said there is enough evidence to suggest it is worth giving diet a go. So I am! I notice there is a big US randomised clinical trial started on SCD diet with results in 2015.

Would love to hear about how any one else is doing on this path and if anyone uses calprotectin testing to monitor inflammation levels.

Dee Dorset,
I just remembered that helena101 used the EN diet and monitored with calprotectin. Try looking up some of her threads.

This is the best, most thorough explanation of a successful elimination diet I have ever read. THANK YOU SO MUCH. I've been considering trying one myself, but I felt so completely overwhelmed by the idea that I've been too intimidated until now. Your post has encouraged me to take the next step. In fact this was my first post as a member of this forum. I stumbled upon it today, and was so thrilled you shared your experience. My experience with diagnosis, like many others, has been difficult emotionally and physically. It's a relief to have found a kindred spirit with a success story. I'd be interested in hearing about your experiences with "nightshade" vegetables, e.g. tomatoes, eggplant, peppers. I've heard they can be problematic for some.

MtnGirl

Diagnosed 07/12

MtnGirl,
Welcome to the forum and thank you for your kind words.

I tested the nightshade vegetables much later in the process of elimination. I think potatoes are in this category and I started with small amounts of steamed potatoes, then cooked sweet peppers and then cooked, peeled and seeded tomatoes. I am just testing eggplant now. So, yes I can eat them now, but I added them quite late in the testing process. But, I am doing very well now, so I can eat their skins and seeds and small amounts of them raw.

Please share your journey with us in the My Story section of the forum.

Good luck with whatever treatment you choose; may you soon be feeling well.

I'm glad mtngirl asked these questions as well! I've been doing fairly well on the elimination diet. Most foods I've tested outside of the main ones have been failure. I've been successful with potatoes if they are peeled. I haven't tried tomatoes yet; I've been nervous about the higher acidity of them.

I have really noticed that kefir milk is soothing and makes me feel better most of the time. I've been drinking it daily. I make homemade yogurt too and that's good and soothing.

Mtngirl, the elimination diet is one I had a tough time with because it is restricted, but the results are truly keeping me in line! When I stick to it I do feel so much better. I've tried to reintroduce a few foods - nuts, red meat, pork, white-bread gluten - all of which were failures. So mostly I've decided to stick to it. Seafood, fish and skinless boneless chicken all work well for me.

mccindy,
Glad to hear that you are having success with the elimination diet.

Thank you happy for the most accurate version of how to manage your Crohns through diet that I have ever read. Your summary of how the process works is spot on. I am a current patient of Professor Hunter and have managed my Crohns through diet under his guidance since being diagnosed four years ago. I currently take a low dose of asacol every day but that is all the meds I take and all I have ever taken. It may be that I will wean myself of asacol some time in the future but for now I am happy to take it.

It is important for those who think they might like to try this approach to follow the process slowly and not to skip any steps. It took me almost four months to test foods but now know that I cannot eat wheat, corn, oats, soy, dairy, citrus fruits, tea or coffee. Also, like most people with Crohns I have to watch the amount of fat and fibrous foods I eat but this is just a matter of trial and error.

I thoroughly agree with happy that the books Professor Hunter has written on the topic are well worth reading, probably more than once, so that the process is thoroughly understood before starting.

Hi Mattie, Thanks for the thanks!
I am glad to hear that you have had success with this method of treatment as well.
Please post in the My Story thread so we can learn a little about you.

Well, I haven’t updated for a while. While I still consider myself firmly in remission (now over two years) on the elimination diet after total EN, I have had some problems.

First, I have gained weight—too much weight--while following a gluten-free, dairy-free and corn-free diet (although I do tolerate small amounts of cornstarch), and free of other eliminated foods. There are many reasons for the weight gain: becoming healthier and no longer malnourished; moving to a larger centre with easier access to foods that I can tolerate, but that also have higher calorie counts and higher simple rather than complex carbohydrate content; and better absorption of fat and other nutrients. In other words, because I became healthier, I began to experiment more with foods that were not as healthy and nutritious although ‘safe’, that I did not make myself.

Second, this past summer/fall I did intermittently struggle for about four months: increasingly loose stools, nocturnal bowel movements, major bloating that was worse at night, some pain beginning again, possibly some blood, and feeling really yucky and tired. No sustained weight loss, though. However, I now believe that my symptoms were due to my own stubbornness that I try to eat more vegetables and fruits, especially raw (like salads). Also, I started eating more sweets, especially chocolate (high cacao content, non-dairy). So, I was eating more fat, fiber and sugar. I also tried to introduce ‘pure’ oats again and it took me several weeks to again realize that the oats were causing me problems.

This past month I would say that those symptoms have definitely resolved just with me being more diligent with my diet again. I have never knowingly eaten foods that I have eliminated (like gluten or dairy) but I believe that the experimenting with ‘allowed’ foods as described above did set me back for several months.

Despite this setback, I am still much healthier than I was the previous three years although it has been quite a learning year for me. I am still trying to find ways to eat ‘normally’: to entertain friends and family and to travel while adhering to my diet, without having to cook/order separate foods. This is still a great challenge. For instance I still have many ‘flops’ when trying to bake, and it is still very difficult to find a restaurant that I can eat at (or to cook a meal) that everyone likes as well. I think that it is a common experience with a chronic disease to want to live as ‘normally’ as possible, especially when one is feeling better. Testing and pushing the boundaries of the limitations of the disease is to be expected, but then this can create setbacks. I guess that this is what it means to live with a ‘chronic’ disease. I do recover from the setbacks very quickly now--rather than it taking weeks, it is only a day or two, and I haven’t needed formula to recover for at least 18 months.

Luckily, my ‘malnourished brain’ problems are much better—I can do most of the work that I want to do as long as I don’t get fatigued. My energy level is much better, but it is still not as good as pre-IBD days. Psychologically I am moving into a new mindset of ‘not being ill’ while still needing to allow for days of illness and recovery when necessary. I guess one would call this ‘wellness’, with ‘acceptance of chronic illness’. ‘Acceptance’ has snuck up on me recently, as I was so focused on just ‘getting to wellness’ for so long. Now I am beginning a time of just living my life, without so much focus on ‘illness’ or ‘diet as treatment’. Now it is just ‘diet as lifestyle’, even though diet is still my treatment. Still, it has taken much longer to get to this stage than I ever expected.

So, overall the EN followed by full elimination diet has been a successful treatment for me--I am so very blessed.

I would also like to add that being diligent with no cross-contamination of gluten (unfortunately, including ‘pure’ oats) and being diligent with no dairy, including the casein protein, are essential to keeping myself healthy. I sometimes wonder when others struggle to maintain remission when starting the diet if they know how gluten hides in foods such as soy sauce, on cutting boards, in Panini presses, pasta water, and toasters, etc.; and how dairy hides in ‘non-dairy’ milks, cheeses, yogurts, probiotics, etc.; and how they both hide in luncheon meat and sausage, medications and some EN formulas.

If you do take the time, effort and money to use EN followed by a full elimination diet as your treatment choice, please do educate yourself about the hidden sources of the foods that you may be sensitive to so that you optimize your chances of being successful. I did not begin to get success until I avoided cross-contamination.

Thank you for following my treatment journey. May you have success with your own treatment journey.

Thanks so much for updating happy.

Despite some up and downs it is so fab to hear that you are still in remission. Well done!

Dusty. xxx

Hi happy,

It's been nearly a year since you last updated, I would love to know how you're doing now?

Sarah

Hi SarahD,
Thank you so much for asking how I am.
I am very happy (get it?) to report that I am doing extremely well. This past year has been the most normal one for me since diagnosis. I am still overweight; however, I am quite healthy.
I still cannot do everything activity-wise that I would like to all of the time. Some of this is because of some spinal issues (another very serious episode happened again this past year that I have mostly recovered from), some is due to aging, some is due to muscle loss from my initial IBD illness that I can't seem to recover, and some is due to plain old poor conditioning.

I rarely have digestive complaints unless I eat too much fat, fibre, fruits and veggies, legumes or eat away from home and mistakenly ingest a food that I react to.

There is no change in my diet from my last post--no foods added, none taken away.

The biggest change for me is probably that my diet as treatment is just now my lifestyle and part of my family's as well. I am very upfront everywhere I go about what my needs are. If I am invited to someone's for dinner, I just bring my own food and I don't make a big deal about it. I choose restaurants very carefully and again I am very specific at the beginning of the meal what my needs are. We purchased a small trailer that I can cook in, so this makes travelling much easier. If we fly somewhere, we stay somewhere that has cooking facilities.

The biggest issue with eating away from home is cross-contamination with gluten. I have learned to research the ingredients at restaurants, to view their labels and ask servers to check with the cook. I have left restaurants or chosen not to eat if I have any concerns. My recovered health is too precious to forfeit.

I always have with me an energy bar, plain soy milk, and rice cakes that are all safe for me to eat. This way I can participate in the activities just like everyone else without being concerned about where, when, or what I will be eating.

I am also learning how to cook things that appeal to my family members that I probably won't eat, but that won't cross-contaminate my kitchen either. So I will be attending a couple of Gluten-free baking classes to learn some techniques, but I won't be able to eat the food that I make as it will have dairy, corn and oats in it; and, although the food will not contain gluten, it will not have been prepared in a gluten-free kitchen so there is too much cross-contamination risk for me. I hope my family will enjoy the food and that I will enjoy baking it for them.

Although life is great for me right now, I so hope that any of you who are reading this post who are not doing well at the moment to please continue to have hope for your future. Four years ago all I could see ahead of me was more illness. Now I am blessed with good health. May good health be in your near future as well.

Well done happy. That's amazing. Like you I also follow the dietary route to control my Crohns under the watchful eye of Professor Hunter and, like you, I also am doing well 5 years on. Long may it continue.

www.crohns.org.uk

Hi Happy, on the liquid elemental diet (VivonexPlus) were you able to drink it or was it via tube. How did you handle the taste? Sorry to bother, just wondering if you had any tips.

Super to hear you are doing well!

Well, If* the stuff just tastes bloody awful.
But I was highly motivated to drink it because I had no other options. Although I had had a colonoscopy that showed the ulcerations in my small intestine, a GI consult was months away, I was rapidly losing weight, and the doctors in the community where I lived at the time didn't understand the urgency of my situation because I was overweight to start with.

I had already tried all ready-mixed liquid drinks that were available to me at the time. Vivonex was my last hope before a hospital admission in a community four hours from my home.

So, incredible motivation is a start. Then deciding on a plan before beginning, such as how long you are going to use EN for, what objective data you will use to make your decisions, what process you will use to resume eating solid food after, and what treatment you will use to maintain remission after EN (if remission is your goal), is really important.

So for me, the initial goal was to have nourishment that would keep my alive while I waited out the several months before my GI visit, then it changed to achieving remission and then it changed to maintaining remission while introducing food and finally it changed to just using EN if I became unwell while eating food. Always knowing why I was using EN was so very helpful to me to keep up my motivation.

None of this answers your questions about the taste--what I am trying to say is that the taste became secondary to the necessity of needing to use EN as treatment. As well, I would seek out stories about children who needed to use EEN and the difficulties their parents had in trying to get them healthy. I would remind myself that I had in fact had a long life of eating and that if I was never able to eat again, then at least i was blessed with my years of eating that some of these children would perhaps never experience in their lifetime.

So other than high motivation, mixed the next days' formula the night before, chill it and pour out what you need throughout the next day. I sipped without a lid throughout the day. Others prefer a lid so there is less smell and they drink it quickly at meal times. Others prefer an NG tube.
:goodluck:

Glad things are going well happy

I think you really hit the important thing
It's not about the food but the people.
There are chef card s that can be laminated to be sent back so they understand your dietary needs .
DS had food allergies for years so I get the bring your stuff with you
A rice cooker can make so many many things on the road


As far as drinking formula if
DS used a lid and a straw to bypass the taste buds
Pinching your nose also helps
DS did EEN for 9 weeks orally and has drank 2-3 shakes a day ever since for three years now .

Good luck !

Happy
Also color code your kitchen
Unsafe stuff on color coded cutting boards certain pans spoons etc... Certain areas as well if you have space
Little garage sale sticker red green also help after you read the label three times ( at the store unloading and prior to cooking ) so you don't get the bad stuff by accident.
Keep a seperate toaster and use foil in a toaster oven
Set certain burners on the stove for safe vs unsafe so it's habit

Thank you Happy, I was worried it was just me thinking what it taste like. I tried drinking it and just couldn't get past the taste. I applaud your diligence and motivation. I totally understand it is to be mixed with only water for the best chance of success for remission. The only way I think I could handle it would be the ng tube.

Your method and way of eating sounds similar to the Lofflex diet. Had you heard of that?

Thank you a bunch!! I really appreciate your reply.

Hi If*,
Yes it is Dr. Hunter's program that guided me. I used his book, info from another forum member and I looked up old studies of his. Unfortunately the LOFFLEX (Low Fat, Low Fibre, Partial Exclusion) diet did not work for me so I had to go back on EN and try his full elimination diet instead. This has worked well for me--no gluten, including 'pure' oats (and strict no cross-contamination policies), no fresh corn or corn meal, no dairy, no red meat, few raw fruits and veggies, low fibre, low fat, and fewer veggies and fruits in general is the main diet for me.

mlp,
Thanks for the tips--yup I have done all of that, but now I don't have to--at the moment I have the luxury of two kitchens as we have an unoccupied suite downstairs. Oh the joy and lack of stress in cooking and eating everything safely in my own kitchen! The gluten-eaters have been well trained to keep it in the downstairs kitchen and they are used to gluten-free only foods upstairs if I am doing the cooking. And I will soon try doing some gluten-baking downstairs, that again will be consumed downstairs. It is so much easier with all the comings and goings of young adults and their friends to not be explaining about safe and unsafe food handling. As well I get more help in the kitchen because people are not concerned about making me sick. :ybiggrin:

Let me know if you need any gluten free recipes
DS was gluten free for two years and it all had to be made from scratch
Wacky cake is my favorite since its free of the top eight allegens
Next would be sundae brownies

Or gluten fee angel food cake yum

Hello

Great to read this.

I have also followed a similar approach to you. Elemental diet with antibiotics for 7 weeks, then introducing food using John Hunter's approach.

The turn around of success was very rapid and I have been feeling great for months. However, Recent bloods and stool test have come back with a slight elevation of inflammation after months of no trace. My doctor wants me to go on Imuran.

Do you find it easy to eliminate specific foods? Do you get an immediate reaction or does it take a while until you know you have eaten the wrong thing?

Thanks
Noah

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.

:goodluck:

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?

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.

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?

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.

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. :goodluck:

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.

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.

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

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. :hug:

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 haven’t always reported back.

Anyway, to summarise for those who haven’t read the whole thread, I tried the diet, flared up (as I continued to eat the wrong food and didn’t 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 haven’t veered too far from that list, and the rules around fat/fibre/fructose/r.starch.

That’s 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 that’s ok, then next on the list is sardines, as it is also a high fat fish.

Happy, how are you doing? I hope you’re still well.

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.

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?

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.