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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Elemental, lofflex and elimination diets


11-05-2011, 05:21 AM   #1
helena101
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elemental, lofflex and elimination diets

Hi, I'm about 3 months into trying to tackle my crohns with diet..
I started with elemental nutrition (which didn't really go too great), I relapsed immediately when I went on the 'lofflex' diet, and then I started the elimination diet in september and since then i'm doing reasonably well.
This is the treatment plan of Prof Hunter (author of 'inflammatory bowel disease'), and I go to cambridge every few months for a follow up with him.
i'm off the entocort, but still on the pentasa, and symptom-wise i'm ok, other than an occasional mouth ulcer, but calprotectin tests show that there is still moderate inflammation.
I have a long way to go with testing foods, as it takes 4 days per food, so i'll be doing this for more than a year, and thats only if all goes well.
I'm just curious if anyone else has tried dietary treatment for crohns, or is in the process of trying? If so, it would be great to know how you are doing!
11-05-2011, 01:25 PM   #2
happy
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Hi helena101,
Welcome to the forum. I have been following the full elimination diet (after an elemental diet) for three months. I am not on any medication for IBD. I also relapsed on the LOFFLEX diet.

How am I doing? Well, it has been a long time of being very ill since last fall, so most of my problems now are probably related to chronic malnourishment. I also had some upper abdominal issues the past two weeks that have finally resolved. But overall I would say that the elemental plus elimination diet has resolved my IBD symptoms of pain, diarrhea, cramping, bloody stools, nocturnal BM's, bloating and rapid weight loss.

Fatigue is probably my main problem now. I am iron deficient and started iron shots two weeks ago. I also take Vitamin D and Calcium. My B12 is normal. I am still on two servings of fruit and two servings of vegetables per day, so I do have concerns about getting all of the vitamins necessary from those food groups. However, I haven't been able to find any vitamins that I can take that don't have ingredients that I can't tolerate.

I also developed "cotton wool" blind spots in my eyes in Feb., probably due to malnourishment from being ill for so long, despite being on the formula. Fortunately, these spots have resolved.

I am grateful that I no longer have the acute IBD symptoms, however I have found the elemental/LOFFLEX/elimination diet process to be quite long. I first learned about Dr. Hunter and this process almost a year ago and started with the LOFFLEX diet then (but without the elemental diet first). So for me it has been about a year of finding a solution that works.

Fruits, veggies, fibrous foods, milk products (which seem to be in everything) and fats are the main problems for me. Rice and quinoa (technically a seed of a fruit) are the only grains/starches that I have tested so far. I cannot tolerate any greens at all, no matter how they are prepared. I tolerate only about 15 grams of fat a day, which is only three teaspoons.

I have found that researching food families has helped me move onto some foods faster. For instance, I eat roasted smooth almond butter as one of my fats. Because it is in the Plum family (which I can tolerate cooked), I was able to test this sooner than waiting for the nuts list later.

I haven't needed any formula for about two months. The longer I am away from it, the more I think that I could not tolerate doing the elemental diet again. However, when I was on it, I was pretty ill, so I had high motivation to stick with it then.

I am jealous of you because you get to see Dr. Hunter and have advice from his team. I have had to do all of this on my own without advice from doctors as this is not a usual treatment for adults in Canada. I have consulted a dietician, but she was only able to help me figure out how much formula calorie-wise to take and what vitamins I was lacking during this process, but not how to obtain them.

It is good to talk to someone else who is going through this process. May the elimination diet go smoothly for you and may your symptoms continue to resolve.
__________________
Diagnosed with IBD Sept. 2010
Enteral Nutrition induced remission in August 2011
Maintaining remission on Full Elimination Diet
11-05-2011, 03:54 PM   #3
helena101
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Thanks Happy for replying to my post!
Great to know that you did well on the elimination diet! Did you test each food for 1 day or longer? Dr Hunter has asked me to spend 4 days on each food, I think this is because I don't have very dramatic symptoms. Maybe also because i'm far away, its safer, though really really slow. I figure that by the time I finish testing all the fruits and vegetables, it will be over a year (I started the process in July, after being diagnosed in June).
i'm just curious, did symptoms come on as soon as you tried a food?
Since i started the elimination diet, nothing has seemed to really upset me. The worst that has happened is a little bloating, maybe the MILDEST of pain (you'd have to really really be looking for it to notice it) and a mouth ulcer once in a while. Its true i've only tested 20 foods so far, so it could be that all 20 were ok, but i'm starting to worry that i wont know when I come across a trigger food...
Good for you doing this by yourself. i'm really impressed!
I wonder if your fiber and fat tolerance will increase with time. When I first started, if I exceeded my fiber allowance even slightly (like if I ate a medium sized apple instead of a small one) i'd feel more bloated, but already I seem to be able to get away with that littlest bit extra.
I wish you the best of luck in your next project of improving your nutritional status, i'm sure you'll succeed!
11-06-2011, 01:11 PM   #4
happy
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Hi helena101,
I'll try to answer your questions. Yes, I test each food for at least 4 days or longer. And I take frequent breaks from introducing new food if I am starting to feel worse.

For me the usual IBD symptoms start about 24-48 hours after I have eaten a new food that I can't tolerate. However, I have learned that I will often get a bit of bloating and abdominal discomfort, that will go away in a few days, with any new food.

You might not notice very many symptoms with new foods because of the medication that you are on are.

If you have any other questions that you think that I could help with, please ask.
11-06-2011, 02:09 PM   #5
helena101
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Thanks Happy,
that's really great advice. I think I have gotten so caught up in the idea of my life returning to normal in a year's time that it hadn't even occured to me to take a time-out from testing. But you're very right, there is no rush, the point is to stay well.
take care.
11-06-2011, 02:15 PM   #6
happy
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helena101,
You take care as well.
03-11-2012, 10:43 AM   #7
SarahC
 
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Just started a blog about the elemental diet. Hope some of you might find it helpful
http://ibdelemental.blogspot.com
03-13-2012, 03:19 PM   #8
helena101
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Hi Happy,
How are you doing with your diet? Have you had any progress with the fatigue you were feeling in Nov?
What are you eating these days?
I have been pretty much symptom-free since september, which is more than I dared hope for when I started the diet.
I've slowed down testing to 7 days per food, and wheat gets two full weeks. Its day 9 today, and still no sign of trouble, so I am starting to feel hopeful that I MAY get to keep it in my diet.
The only thing that has CLEARLY bothered me so far is onions. And I had the MILDEST of symptoms with citrus fruits and mushrooms, so I need to retest those at some point just to be sure.
When I started this I was so sure I would have to be wheat-, dairy-, yeast-, alcohol- free, and I'm taken by surprise that it looks like they are not really problems for me...

Do you eat out at all? I am still afraid to, but I hope to work on this, and find one or two restaurants that I trust, that have one or two items on the menu that i'm comfortable with.

Have you had any improvement regarding how much fat/fiber you can tolerate daily?
I seem to be ok with fat (I eat pretty low fat anyway), fiber is more of an issue, I can get away with 2 fruits (or 1-1.5 if they are big), 2 small veg portions, one small portion of oats, and up to 15grams of nuts per day. Any more than that and I can feel the difference, but I am able to comfortably work within these limits.
One thing that I don't think is in Hunter's book that perhaps you are not aware of, is that when a starch gets cold its chemical structure changes and it may be more difficult on your digestion (it may be the equivalent of eating more fiber). He recommends eating ALL grains freshly cooked, not reheated leftovers, until I officially test cold grains to see if they bother me...
I don't know if that's helpful to you at all, if you've been eating leftover grains and feeling fine then you are probably ok with it..
I hope you continue to do well!
Write a little update whenever you can!
03-13-2012, 05:14 PM   #9
happy
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Hi helena 101,
I am so glad to hear that you have been having good success with the elimination diet. Thank you for updating your thread so that we can celebrate your success. You might like to post on the 'Success Stories' thread as well.

Thanks for asking about me. I am doing very well, especially considering that shortly after my last post on this thread, I developed two disc protrusions in my spine. The one in my neck was very severe, requiring trips to the ER and specialists and heavy doses of pain medication. And because it was so severe (partially paralyzed arm with electric shocks running down it), I even took anti-inflammatories (with Prevacid) for a short while. It was a challenge finding meds that didn't contain foods that I couldn't tolerate, but my pharmacist was very helpful in finding them for me.

So, because of that upheaval in my life, I didn't food test for almost three months. However, I've been off all meds again for a month and I have resumed food testing. I'm testing tomatoes this week-so, all things pasta!

I've added amaranth, oats, tapioca flour, garbanzo bean (chick pea) flour and arrowroot flour. I can only tolerate small amounts of corn starch, but not corn meal. No wheat yet.

Still no dairy, but I can tolerate more fat and more fibre and more fruit and veggies.

I tested yeast, so I can eat rice bread!! This means toast--yum! However, it doesn't have the same nutrition as whole wheat bread, so it is still a treat for me.

I am feeling much better and my energy is improving. I am aiming for yoga class twice a week, pool physio twice a week and core strength, shoulder and leg exercises on my own twice a week. I've managed this once in the last month; just now getting over a cold/virus/ cough that didn't flair my asthma!

So, I am feeling more 'normal' with the ability to fight off 'regular' illnesses.

It is interesting info about the reheated grains. I've been having some bloating and flatulence issues while travelling lately. Perhaps it is because I have been eating more re-heated grains as I usually travel with most of my own food prepared. Thanks for the info--I'll take a look at this. Do you have an article or reference that he cites?

Eating out-- yes it is a challenge. The best meal I had was at a restaurant in Vancouver, B.C. They had just opened for dinner and it wasn't busy. I walked in and told the waitress very specifically what I wanted and later she presented me with a beautifully arranged plate of plain basmati rice with grilled salmon (grilled with a little olive oil) steamed carrots and steamed prawns. Yummy! It was so good and of course I had no problems.

Usually I call in advance and order a plain grilled or poached chicken breast with steamed asparagus or carrots, and plain rice. I have found an Asian restaurant that will make me a fresh stir-fry of chicken, onions, garlic, ginger, carrots, and fresh round peas on steamed rice. I bring my own wheat-free soy sauce to put on it and it is delicious. Often I just bring my own food in a microwave-safe container and ask the waitress to heat it up for me. I've never had a problem with this. I also always bring a small carton of soy milk and sometimes rice cakes with almond butter on them to eat during the appetizer time.

Are you still on some meds? If you are and decide to go off them in the future, just remember to pay very close attention to your symptoms and the foods that you are eating as you may need to tweak things again then.

May you continue to have success!
03-14-2012, 02:58 AM   #10
helena101
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Hi Happy,

thanks for posting! So sorry to hear you still had troubles, but glad that crohn's-wise you continue to do well!
I wont be posting on the 'sucess stories' yet... It will still be a few more months before I am really confident that this is working. Even though initially all my doctors wanted to put me on stronger medication (remicade and azathioprine), and the fact that I am doing so well on so little medicine is a good sign, I still want to have a full year were I am well before I start celebrating. I don't even let myself think I'm in the clear, the disappointment afterwards would be just too huge if things should change.
Medication-wise I'm still on Pentasa, but I think the plan is pretty soon to take me off that also. I am due for another consultation in May, so maybe then. I was taken off the steroids right away before starting dietary treatment, but I don't THINK that the pentasa is supposed to be strong enough to mask symptoms if I eat a trigger food. But we'll see, as certainly it has acted as a bit of a buffer...
Regarding the 'cold' starch, it was actually my dietician in cambridge who told me to avoid it, and no she didn't site any articles. She called it 'resistant starch'. I googled it, and this is what I got:

"
Resistant starch is considered the third type of dietary fiber, as it can deliver some of the benefits of insoluble fiber and some of the benefits of soluble fiber.

Some carbohydrates, such as sugars and most starch, are rapidly digested and absorbed as glucose into the body through the small intestine and subsequently used for short-term energy needs or stored. Resistant starch, on the other hand, resists digestion and passes through to the large intestine where it acts like dietary fiber.

Resistant starch has been categorized into four types:

RS1 Physically inaccessible or digestible resistant starch, such as that found in seeds or legumes and unprocessed whole grains
RS2 Resistant starch that occurs in its natural granular form, such as uncooked potato, green banana flour and high amylose corn
RS3 Resistant starch that is formed when starch-containing foods are cooked and cooled such as in legumes, bread, cornflakes and cooked-and-chilled potatoes, pasta salad or sushi rice. The process of cooking out the starch and cooling it is called retrogradation (starch).
RS4 Starches that have been chemically modified to resist digestion. This type of resistant starches can have a wide variety of structures and are not found in nature. "
Enjoy tomatoes!! How are you doing with them so far? Its a great addition!

Take care!
03-14-2012, 11:14 AM   #11
happy
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@helena101,
Thank you for looking up that info for me --although I would find it impractical to prepare all grains just before eating, the info will help me to pay attention in a new way to any symptoms related to eating grains. Looking back, I think that this may apply to oatmeal for me. So, I will always try to prepare oats freshly and see if it makes a difference.

Yes, I am enjoying tomatoes. So far OK. I made a yummy pasta sauce with tomatoe paste, carrots, onions, garlic, spices and tofu with brown rice macaroni that I am eating over a few days. I have a great rice pizza crust and non-dairy cheese, so I'll add some of the sauce to that and I'll have a proper pizza next!

@SarahC, Thank you for letting us know about your blog. I hope that the EN diet soon goes easier for you. I think that once I got to the ten-day mark it got a little easier. And setting small goals for myself like ten days, two weeks, another five days, seven days, ten days etc. really helped me. Good luck.
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