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03-30-2012, 07:01 AM   #1
helena101
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Diet success

I was diagnosed with Crohn's in June 2011.

Before that symptoms were fairly minimal. I had one instance of blood in stool the previous summer, 1 instance of abdominal pain a couple of months after that, and then for about 2-3 months leading up to diagnosis I had diarrhea on an almost permanent basis.
So finally I went to the doctor, had a colonoscopy scheduled for the following week, but before I even got a chance to have the colonscopy a (trans-sphincteric) fistula had formed.
After endoscopies I got the crohn's diagnosis, and was prescribed Ciproxin, Flagyl, Budesonide, and Asacol, to start with, but on the assumption that this would not be enough to keep me in remission. I met with 4 different gastroenterologists, 3 advised me to begin remicade, one thought that azathioprine would be enough.

Instead I went to Cambridge, met with Professor John Hunter and started the dietary treatment described in his book ('Inflammatory Bowel Disease'). Initially I was on the elemental diet for 3 weeks, during which time I continued all medication apart from the antibiotics. The fistula healed during this time. After this point I went on the LOFFLEX diet (I can explain this in more detail if someone wants more information) but I relapsed immediately on this, mostly I think because I was basically not well yet.

So the next step was to go back on the elemental diet for another week, and then start the full elimination diet (where no food is considered safe, and you introduce one food every 4 days - or longer if needed). I am doing VERY well on this. I have been symptomless since mid-august and all my blood work is normal.

I have been surprised with the things that bother me. They aren't the grains and the dairy that we all would normally suspect. Wheat appears to be fine, as does milk, and even ice-cream in small amounts. But onions and pork are definite triggers for me. Citrus fruits and mushrooms are probable ones. And I'm sure that by the time I'm finished with testing I will have discovered a few more.

I still have a long way to go with food testing, as I am now testing each food for a full week to give symptoms time to develop. But I am confident that it is working, and by now there are a lot of foods that I CAN have, so eating is not really a problem any more. I am only on Asacol now, with the plan being to come off it very soon.

I just wanted to share, as I think it is very hard to take the plunge and try something like this, especially as there are no guarantees that it works, and it takes a lot of time and effort. But if any of you are thinking of trying this method, maybe it helps to know that it CAN work...
03-30-2012, 09:59 AM   #2
David
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That's great Helena, I'm pleased you're doing so well There's a few people around here who have had great success with an elemental diet and subsequent elimination diet. I'm happy you're one of them and pray that it continues

Welcome to the forum by the way!
03-30-2012, 01:05 PM   #3
Angrybird
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Hi Helena, I am really pleased that to hear that you are doing well, will keep fingers crossed that this continues for you

AB
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
04-02-2012, 02:02 PM   #4
helena101
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Thanks David and Angrybird for your responses, and for wishing me good luck!
Lee10, I did reply to your message, but I think your inbox is full, so perhaps you never received it...
04-06-2012, 05:04 PM   #5
happy
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helena101,
I just wanted to wish you continued success with your dietary treatment. It is nice to have a fellow successful traveller on the elemental and elimination diet path.
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Diagnosed with IBD Sept. 2010
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Maintaining remission on Full Elimination Diet
04-07-2012, 11:16 AM   #6
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Thanks Helena,

I think elimination diets are great. They made a huge difference for me with celiac disease. The problem is that food allergies and food intolerances are different. So the tests for food allergies are no good for determining food intolerances. Allergy tests just don't work for intolerances. Sometimes there is an overlap but not always. But an elimination diet is a good way to find the intolerances.

Allergy tests are for IgE antibodies, while food intolerances seem to be caused by IgG and IgA antibodies. So they are not even testing the same antibodies in allergy testing.
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Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Celiac disease, (not Crohn's), thyroid cyst and nodules, Lactose / casein intolerant. My current bad list is: gluten (wheat, barley rye and oats), dairy, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, nightshades (tomatoes, peppers, potatoes), alcohol, and hard work. have a good day! :-) Paul
09-25-2012, 11:34 AM   #7
helena101
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Hello all,
It has been a long time since my last post, and a lot has happened since then.
After enjoying a year of full remission on Prof Hunter's elimination diet, I was able finally to have some semblance of a social life. Traveling was still hard (difficult to eat all my meals out) but I could go out for a meal or a drink without much trouble. So it was decided it was time to stop the asacol, which supposedly did not have a substantial role to play in my remission. I was taking 3 800mg tablets per day, I reduced to 2 for one month, then 1 for a month, then 0. About 3 weeks into 1 pill a day I had loose stool for 2-3 days, but this resolved. I did a Calprotectin test, and levels were still good.
I guess you know where this is heading... About a week into 0 pills per day stool became loose again. I did another Calprotectin test and waited for the results. In the meantime I had no other symptoms: no pain, no bloating, no gas, no urgency, only 1BM per day... But the looseness didnt resolve. My Calprotectin test came back unbelievably high... It was >1800, when normal is <50, and I had only been at 110 two weeks before...
All this happened in July/August, so needless to say it put a damper on my summer vacation...
So the big question was, what now???
I had always found it strange that my only trigger foods were onions and pork. I mean, who expects to be able to treat their crohn's with diet alone, and still be able to eat pizza and ice cream and beer??? And Professor Hunter had also thought it was strange. So we have assumed that the asacol 'covered up' the signs of a food (or foods) that are triggers for me, and that it had been a mistake to go through a whole year of food testing without coming off the asacol first.
So... I didn't want to go back on EN. I didn't actually feel that well on it a year ago. But I had to do something to bring the inflammation down. So I went back on my full dose of asacol, and started the Lofflex diet, so that I wouldn't have any potentially offending foods in my diet.
Amazingly, BMs firmed up within days, Calprotectin dropped down to 273 in 5 days, and to 32 two weeks after that, putting me officially back in remission. Is it the diet or the asacol that is responsible?? I still don't know.
I now am in the process of tapering down the asacol again. There have been a few bumps along the way already. So I don't know if I will succeed in coming off it.
If I do, I will start introducing foods all over again... It's not an easy task, it's very draining emotionally, but I'm a pro at it now! If I don't, I have said to myself that I will give things until February to do whatever other options my doctor suggests (even EN again if need be). If by February I am off the asacol and have started introducing foods, it's still a huge success, even though it will mean devoting 3 years to sorting out my diet. If I am not well without the asacol by then, it's time to 'run away, and live to fight another day'. I can't get sucked into an endless losing battle. But, just so that I end on a positive note, I still feel that my story is 'a success story'. When I was diagnosed in June 2011, ALL the doctors I saw advised remicade and aza combined. Instead I've been 100% well for a year on asacol plus diet. So even if I am unable to remain well without the asacol, I don't imagine that I would now be a candidate for more aggressive treatment.
So I'm still glad I tried to do it, even if I don't get to be 100% drug free in the end...

Last edited by helena101; 10-08-2012 at 09:58 PM.
09-25-2012, 08:01 PM   #8
David
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Hi Helena. Thanks for sharing what's going on. Very interesting indeed. Please keep us updated as to how you're doing
10-12-2012, 12:58 AM   #9
helena101
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Hi David,
Thanks for the interest and the post. I am off the asacol now for 10 days, and my Calprotectin level is still low at 35. On my last attempt to stop the medication it had already shot up to 1800 by this point, so that's a good sign.
If I'm still feeling 100% well in a week's time I will start introducing foods. But I don't dare celebrate yet, it's still VERY early, I'm still on shaky ground...
10-12-2012, 08:20 AM   #10
David
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Sounds good and good luck!
10-26-2012, 04:42 PM   #11
helena101
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Still struggling to get things settled without the asacol. I seem to be very sensitive to fiber, and have had to cut back a lot on fruit and veg (not that I was having lots anyway), in order to have consistently formed BMs. But it has taken me 2 weeks to figure this out, and in the meantime Calprotectin is up a bit at 155. Hopefully with my new discovery I will be able to bring it back down and start adding some new foods soon...
10-26-2012, 05:16 PM   #12
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Hi Helena,

Thank you so much for sharing your story. I really enjoyed reading it and feel inspired by everything you've done. One thing I really want to try to avoid doing is getting onto a medication regimen, and so have looked into possibly undergoing a process similar to what you described. It sounds like it's a very time-consuming and draining process -- good for you to really stick with it and for giving it another try despite first time not being fully what you hoped for. I hope this time you're able to identify all of your triggers and can develop a healthy and sustainable lifestyle.

Keep us updated

Mo
10-27-2012, 02:27 AM   #13
helena101
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Dear Mo,
Thanks so much for your post! Anything you want to ask me please feel free.
Helena
10-28-2012, 12:53 PM   #14
Brenda Beach
 
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I am interested in purchasing some Crohn's disease braclets? Any suggestions on where they may be purchased.
10-28-2012, 02:53 PM   #15
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Hi Helena101,

This is my very first post here, that being said I have enjoyed reading many stories. Truthfully I'm looking for another path to follow. I have a moderate to severe case of CD which was first diagnosed in 2006 (My freshman year in high school). In 2008 (18yrs old) I had my first life changing decision to make. Continue to suffer with 4 fissures and a great deal of blood in my stool or have surgery and receive a Colostomy. The first year went well, the second year I developed a wound by the stoma which eventually a fistula connected to... so i was pooping out my wound for about a year before they decided to do a revision. (I avoided eating things like corn... because yeah and ouch) So Sept. 23, 2011 was my revision. I have been on Remicade (which my body built up antibodys to) Imuran, asacol, prednisone, but now I'm on Humira which is a subcutaneous shot (I have no inch to pinch at 6' 140lbs) needless to say there isn't much more they can do aside from surgery. It has been a year since my last surgery... and I have again developed a fistula which has found a way out next to my stoma. At this point I am pissed off (frustrated) and looking for natural ways to heal and feel better. I find it Very Sad that my GIs never thought of diet being a potential solution. I was never referred to a nutritionist until I suggested it. My first appointment with a nutritionist is on Nov, 17. Do I need a dietitian? I'm very interested in the Elimination Diet and would like to know more about both the elimination diet and the LOFFLEX diet.

Thanks for listening,

Cpushard89
10-28-2012, 03:33 PM   #16
helena101
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Cpushard89, Thanks for sharing your story!
It sounds like you've been through a hell of a lot...
Most doctor's do not consider diet to be a treatment option for CD. Some believe that nutrition can help, but that's about it...
My doctor in Cambridge is one of very very few who believe that diet is powerful enough to bring about and maintain remission in crohn's. Can you order his book 'inflammatory bowel disease' by professor John Hunter?
He describes the whole process of the diet, which starts with Elemental Nutrition (a liquid feed) usually for 2 weeks or more, and then moves on to introducing foods. 'Happy', another poster on the forum, followed this course of treatment all on her own from Canada with no real support from her doctors, and has done fantastically well. That said, having been through as much as you have, I am sure you would feel more comfortable if you had a doctor to back you up in your efforts...
Where do you live? Is a trip to cambridge UK an option?
The elemental feed is supposed to bring about remission - the theory is that it starves out the 'bad' bacteria that trigger our immune system to overreact. Then you reintroduce foods to see which ones cause symptoms to reappear. For this part of the process it is important to be off all strong meds. Supposedly it is ok to be on milder drugs like asacol, which are not meant to be powerful enough to cover up symptoms of food reactions. But if you are on steroids or immunosuppressants or biologics, you won't be able to tell which foods are triggers for you.
Unfortunately it is likely that your nutritionist will know nothing about this approach, I know that's not what you want to hear... I think the best starting point would be to get the book and read it, and see what this course of treatment involves... I hope this helps... I wish you the very best of luck in finding a way to manage this awful disease...
10-28-2012, 04:04 PM   #17
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Unfortunately a trip to Cambridge is far from within my tiny budget, I live in Maine, US... though I could visit Cambridge, Massachusetts I may end up ordering his book when I have some extra money to play with.
10-28-2012, 04:17 PM   #18
helena101
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Yes that does make things difficult.
I realize my answer wasn't that that helpful, especially since you won't get the book right away. So here is a brief description:
The elemental diet is to get you to remission. This is phase 1.
Then the lofflex diet is phase 2. This diet omits the MOST common trigger foods:
So chicken, beef, fish are allowed, but not pork.
Rice and potatoes are allowed but no wheat, oats, barley, rye, corn.
No yeast, alcohol, caffeine, no dairy produce, or eggs.
Soy milk is allowed and small amounts of olive or sunflower oil.
Many fruits and vegetables are allowed if they are peeled and seedless, but no apples, bananas, citrus fruits, dried fruit, and no tomatoes or onions.
Sugar and honey are allowed, salt and pepper, herbal teas, spices in moderation.
After two weeks on this diet remaining foods are tested for a period of 4 days each, longer for wheat.
Some people relapse on the lofflex diet, presumably one of the allowed foods is a trigger for them, so they need to do the full elimination diet.
With the elimination diet no food is considered safe. So after the 2+ weeks on the elemental you start introducing each food one at a time, first chicken, then rice etc, for a period of 1-4 days each depending on how long it takes each person to develop symptoms with foods. Hope that helps...
10-28-2012, 04:23 PM   #19
Angrybird
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Hello and welcome to the forum

When following something like the elemental diet usually you do need a dietician as they prescribe the special shakes and monitor how you are doing on them and calculating the required calorie intake etc. I myself tried the LOFFLEX diet a couple of times but unfortunately flared whilst on it. I am not sure how well diet works on fistulas if at all so do speak to your doc about this. We also have a stoma sub forum that you might also like to look at: http://www.crohnsforum.com/forumdisplay.php?f=46.

Please keep us updated on how you are doing.

AB
xx
10-29-2012, 02:23 AM   #20
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Thank you again Helena and thank you Angrybird,

Your Advice is giving me an idea where to start as far as natural healing goes. I am in a great deal of pain, barely moving and I have been right on top of my doctor as far as getting this thing healed. On the 29 of Sept. I went to the Emergence Room to find out what was causing my pain. They just wanted to X-ray me to figure it out... I told them they weren't going to find anything with it, but they went a head and did it with my consent. After they found nothing I told them to CT scan the area and they found loads of inflammation but no fistula or abscess showed up. I said there probably was one and go figure I'm pooping out the side of my stoma a few weeks later. After a regiment of 60mg of Prednisone for 7 days there was no improvement, my Primary care physician kept me on 60mg for another 3 days before tapering it. At the end of the taper I saw my GI and he stared at his computer while asking me questions that had been asked by the nurse moments before... he really didn't have a clue as to what was going on. This is the third GI I have seen. I had suggested to him the idea of increasing the dose of Humira. To see if that helps. So I'm supposed to get a call this week about the new prescription. ( I think I'm just venting at this point sorry ). He also ordered a Colonoscopy for the following Monday. He found nothing but I was still in pain... so for the pain he gave me 300 tablets of Tylenol #3 which were working fantastic till about two days ago. So I'm going to try to taper the dosage back down to 1 pill every 6hrs or so because I've built a tolerance to it. I have pictures and videos of the fistula leaking out next to my stoma, but I can't seem to get my $500 P.O.S. Samsung Stratosphere to connect with my computer so I have pictures!! I don't know if i should post them on my profile.

P.S.
I will certainly check out that sub-forum AB thank you!
10-29-2012, 02:42 AM   #21
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It really sucks that your having such a hard time hun, will be keeping fingers crossed that you can get on the Humira and this can start to sort things for you.
10-29-2012, 03:11 AM   #22
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it's 4:10 am here and I am very much awake, sweating from the rice sock which is helping a great deal with the pain.
11-08-2012, 10:50 PM   #23
helena101
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This has been such a roller coaster ride, and I have become so obsessed with this diet, that I feel a huge loss that this process is coming to an end... It's going to be asacol plus diet for me for now.
Here's what happened:
When I got the Calprotectin reading of 155 (it had been 35 two weeks prior) I decided to keep a closer eye on things and do weekly tests. At the same time I started experimenting with further dietary restrictions to see if this would bring symptoms and Calprotectin back to normal. My symptoms were just that my BMs (1per day) were not always formed. Anyhow, the next week's Calprotectin came in at >1800, and my doctor immediately advised restarting asacol, which I did on Monday.

In the meantime, I have developed a good relationship with the girl at the lab where I get these tests done, and at her own initiative she had them re-check my sample. Last night the result came back that it was in fact 290, not >1800.
So things were not necessarily alarming enough to necessitate an immediate return to asacol. I would have been prepared to continue with experimenting further with my diet. Before I got the >1800 result I had started eating fish and rice only, and excluding all other foods, to see if this would have any effect. If things had improved, i would have started building my diet from there. I would even have given elemental diet another go, even though its a lot of strain, and psychologically I'm pretty exhausted, and its expensive. But my doctor feels my best bet is to keep the asacol, that the other alternatives are too difficult psychologically at the moment, and that asacol is mild and harmless. So I am on it. I am also on the full lofflex diet, and as soon as my symptoms and Calprotectin return to normal I will start introducing more foods...
I am disappointed that the mistake at the lab came at such a crucial point in my treatment, that otherwise I MAY have made it with 100% success... But realistically my chances of this were pretty slim, my diet was already VERY limited when my Calprotectin doubled from 155 to 290 in a week. The chances of my trigger food being one of: chicken, fish, beef, rice, potato, runner beans, pears, olive oil and honey, are pretty slim...
So my adventure with diet is coming to an end it seems...
I still feel its a huge success, even though I didn't quite get the outcome I was striving for.
The end????
11-10-2012, 07:55 PM   #24
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Thanks for the update helena, I'm sorry your fecal calprotectin spiked. You're so very smart to monitor it though! I wish everyone trying the holistic approach followed your lead.

I don't think your diet adventure needs to come to an end. It is simply part of your treatment regimen now. Continue to experiment and add other treatment options and lifestyle changes that you like the idea of. Take the shotgun approach and hit the disease from every angle
11-17-2012, 03:35 PM   #25
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So, Im at 137 lbs and need to be 150-160. I talked with a nutritionist / dietitian on the 15th, and she wants me to change my eating habits. More meals through out the day and my calorie intake needs to be increased to about 3200 cal a day just to gain weight. Because of the fistula that I have, I am also on a low fiber low residue diet. I also found out that the medications I'm taking interact with each other. Methotrexate and Ciprofloxicin ... Cipro increases the toxicity of Methotrexate.. hmm. With a positive out look things will go the way I want them to. I will gain weight, I will Heal, and Most of all I will be Happy and Healthy! I have a plan and I m sticking to it.
12-04-2012, 10:51 PM   #26
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Well done with sticking to a diet. Diet helped me a lot
01-03-2013, 05:06 PM   #27
helena101
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I am sooo tempted to give it another try starting from scratch.
Dr Hunter still thinks I have a chance, though he doesn't really encourage me to try. I think he feels bad that it has taken so long, and that I didn't manage to stop the asacol in the end.
What I would have to do this time is start with elemental nutrition again, but this time stop the asacol while on EN. Then I would have to remain on EN long enough to induce a drug-free remission, before I started adding foods one by one on the elimination diet. Hopefully remission could then be maintained through diet alone. Essentially i did the same thing last time, only that I was on asacol the entire time, so I may have missed my trigger foods.
The pro's (actually there is only 1 pro):
1) this diet makes sense to me, I believe it can work. If there is a diet that can keep me in remission without any drugs, I want to be on it, even if asacol is fairly harmless...

The cons:
1) EEN for such a length of time is expensive (at least 2,000). My insurance doesn't cover it.
2) my husband/friends/parents are pretty sick of my food restrictions for so long, and they'd like to get back to life as normal. (Its been no trips, no eating out for almost 2 years).
3) I'm 38 years old, I'd like to start trying for a baby in the next 8 months or so, but building my diet to a reasonable level will take at least a year.
4) this is the big one: The last two times I tried to stop the asacol my Calprotectin spiked. Once in August, once in November. Is it wise to try again? If I'm in remission now, isn't it risky to keep messing with what works? It can't be good to keep stopping one's meds. What if next time I don't recover so quickly?

I think the sensible thing to do is to wait. Stay on the asacol and my current diet of safe foods for a few years. Have a baby if I'm going to, and a few years from now try again, and maybe next time I can do it with 100% success.
I guess I answered my own question. I'm giving myself one more month to think about it though, as I am having a hard time following my own advice, and I don't want to give up.

Any thoughts anyone???
01-04-2013, 12:33 PM   #28
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Allergy tests are for IgE antibodies, while food intolerances seem to be caused by IgG and IgA antibodies. So they are not even testing the same antibodies in allergy testing.
Allergy tests don't always work either, mainly because allergies (and other chronic conditions) can often "ebb and flow, wax and wane" meaning that symptoms can go into remission, becoming dormant, only to return with a vengeance.

I had every allergy test known to medical science, and went through them for years. The results were never conclusive, because they were never consistent. About the only thing they ever determined is that I'm apparently allergic to different things, at different times. Possibly depending on other factors such as the environment, weather, diet, exercise, stress levels, status of immune system, how the planets are aligned, who knows?

Exercise and eating healthy really seems to go a long way in keeping symptoms at bay, but not always.
01-04-2013, 01:16 PM   #29
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I've been on EN for months, I have asacol in the form of pentasa but don't use it, I am on antibiotics though.

EN is very high in carbohydrates so I add protein powder (albumin, egg). EN is also not covered in Europe for me, it costs me about twice what whole food used to cost me, but EN has the benefit that I do not have to watch what I eat anymore, I do not have to diet, I never have to worry if I have enough micronutrients or anything like that, my diet has 0 fibres.

I use a straw or just drink my EN, it's the same thing as using a tube for crohn if you have no upper digestive tract issues. It's 500 Kcalories per EN, so I use it three times per day and add proteins.

As far as going out to eat, I still go out to eat, I just order a drink and my friends know I use EN, so does the place we go to, it doesn't bother me really.

The fact EN has no fiber in it might explain it's action, bacteria, especially in the colon and distal small intestine use fiber, any change in fiber intake will cause a shift in gut flora composition and might alter the immune response.

EN for me isn't enough to cause full remission, the antibiotics put me in remission, but EN did help, it corrected micronutrient deficiencies.


You've already said it, but Asacol is nothing, if it helps you it helps you, many people with crohn's disease are on super heavy drugs, they can only dream of only having to use Asacol to stay in remission. The potency of Asacol and all the other mesalazine types is very low because of it's low bioavailability, if this helps you stay off the scary drugs I wouldn't think about it twice.

Last edited by kiny; 01-04-2013 at 01:37 PM.
01-04-2013, 06:07 PM   #30
helena101
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Wow Kiny, that's incredible... Are you planning to stay on EN long term? How long has it been so far?
I assume you have experimented with including foods, or various diets?
Thanks for your response and for taking the time to respond to my post. I have seen you around a lot on the forum, and really value your opinion!
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