Diet and Crohn's control

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Keeper
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Date Joined Jun 2008
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   Posted 8/3/2009 2:23 PM (GMT -7)   
Despite the common statement by GI's that diet does not have an important role in Crohn's control, there are reports over twenty years old that support the use of diet. The reports are from allergists, so possibly the GI's do not respect the results?? Anyway, here's a quote from a letter dated 1983 from the British Madical Journal (Denman 286 (6372): 1164. (1983)):

Patients with Crohn's disease are known to respond to an
elemental diet but little is known about the manner in which
diet influences their risk of relapse once the elemental diet is
stopped. Dr J 0 Hunter (Addenbrooke's Hospital, Cam-
bridge) reported that dietary exclusion produced long term
remission in 20 out of 28 patients with histologically proved
Crohn's disease, in many of whom the disease had remained
active despite treatment with steroids or surgery. In addition
141 out of 205 patients with the irritable bowel syndrome also
responded to dietary exclusion. The foods most commonly
responsible were wheat, dairy products, corn, citrus fruit, tea,
and coffee. These clinical observations had been supported by
appropriately controlled challenge tests.

Why is this not the first line of attack for Crohn's??? It is much less dangerous than the drugs or surgery usually employed. I can only guess that GI's are reluctant to take on the cumbersome task of discovering each individual's dietary profile.

CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 8/3/2009 3:11 PM (GMT -7)   
here is the obvious (and cynical) answer:

doctors and drug companies cannot patent diet or food or anything found in nature. if you take an herbal remedy, the drug company does not get paid. the doc just gives a reference for an OTC brand. if one gets well from changing their diet, they do not need to keep coming back to the doctor's office and do not need monthly refills of prescriptions and do not need to have several prescriptions. if you treat the cause, the patient gets better. if you treat the symptoms, which is what most of western medicine does, then you have a patient for life, but more than that, you have residual income. that is how you get rich. just get them hooked and believe this is the only thing that will get them well and side effects are just a part of life and a sign of getting old, so get used to it.

yeah, i know, pretty cynical. sorry. get used to it.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 8/3/2009 3:21 PM (GMT -7)   
My understanding is that young British patients on the Modulen diet undergo exclusion testing when they start reintroducing "real" food into their diets again, so it is possible that this approach has not been completely "forgotten", but is simply not practised very much in the US, where you live.

Britain has a full NHS. Maybe they think it's worth investing that money in dietary therapy, as it may keep patients out of hospital - and thus save the NHS lots of money - in the long term.

In a country like the US where the health system is so privatised... *shrug*... maybe your insurance companies don't want to spend money on preventative interventions....

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 8/3/2009 3:22 PM (GMT -7)   
ps. I could be wrong - just throwing that theory out for general discussion.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 8/3/2009 3:24 PM (GMT -7)   
I think it's worth a try. I have just started the SCD diet. I'm thinking of it as a person does with Diabetes. You may need meds, but the most important thing is diet and exercise. (even if you are Insulin dependent). At first my family thought I was crazy, they are starting to come around. What diet do you follow Keeper? By the way, my doctor thinks it's a waste of time too, but said if I wanted to what could it hurt???
Diagnosed with CD 3 years ago.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg.
 
I live by faith and not by sight....


rack
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 8/3/2009 4:33 PM (GMT -7)   
i noticed diet does help or not with mine if i eat most veg and friut im in agony....so i only eat waterbased veg..etc i find too much bread also doesnt help now ive started for past few yrs getting lot more bloating so trying work out whats not helping etc

Keeper
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Date Joined Jun 2008
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   Posted 8/3/2009 8:59 PM (GMT -7)   
I've also read studies from the US in which they tested high fiber grains versus low fiber and they determined that there was no noticeable benefit. What a surprise! It is almost like they view diet as a drug which has to be tested by double blind controlled studies and the same diet must either work for everyone or it is a failure. There is little room for being different from the crowd, but that is one thing that is common in Crohn's - everyone's different. You certainly hear it here often enough. How come doctors can't handle this complexity?

CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 8/3/2009 9:10 PM (GMT -7)   
most tests are done with an agenda in mind and the outcome steered as much as possible to the outcome the researchers want. remember, a lot of research is funded by drug companies with a vested interest in making their stuff look good and the competition, even nature/diet, look bad. unfortunately the USDA is just as bad as big pharma in the US as they are in bed with one another.

getting a bit off topic in answering ivy6, i dont see socializing medicine being any better for the US, either with crohns or some other disease or not. from the preliminary stuff i've seen, they want to ration health care to such a degree that it makes HMO's seem better. a bureaucrat will be deciding what kind of treatment you get, if any, and it will be a continuation of what we have right now - a society of people hooked on pills cos that is what their doctors tell them to take. and good luck getting any care on the system if you're old. this all seems a way for the govt to put their hands in the insurance pot as there is a ton of money to be made in it. and once the govt puts their hands on anything, they create a monopoly and then we're stuck with a broken system that will never go away. i also really dont like having to pay for moochers, which is what socializing anything does. we'll see what happens....
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/3/2009 10:51 PM (GMT -7)   
It looks a bit like diet is too much trouble for doctors to sort out. An exchange of letters in 1997 in the BMJ showed a reply to a review citing drug interventions as follows:

Wight and Scott surprisingly make no reference to the long term effectiveness of treatment. Elemental diet followed by the detection of food intolerances provides a strategy for maintaining longterm remission.2 In the East Anglian multicentre trial, diet resulted in a significantly superior remission rate at two years when compared with corticosteroids.3

The original author then replied in part as follows:

We are impressed with the tolerance of dietary treatment of Crohn's disease at King and colleagues' institution, but most gastroenterology units in Britain do not have the authors' level of experience and skill and their results will necessarily be considerably worse.

Experience and skill! In identifying food intolerances!! This is a skill that any decent naturopath can claim. Why would doctors not be capable of such a skill???

kim123
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Date Joined Jul 2006
Total Posts : 1201
   Posted 8/4/2009 5:10 PM (GMT -7)   
Doctors are only educated in how to diagnose symptoms and write prescriptions to treat those symptoms,...no fault of theirs, I suppose. Not one doctor suggested probiotics or diet change (actually scoffed at the idea!) from 3 different states over a period of 8 years of UC misery. Yet, it is diet change (antifungal diet) and probiotics that have helped me claim my symptom-, and med-free life I enjoy today.

britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 8/4/2009 5:19 PM (GMT -7)   
When I was hospitalized a couple of years ago, I explained to the many doc's coming in to poke and prod on me that I had started the Maker's Diet approximately 18 months before this flare, but that at the time it had changed my life. I had only stayed strict with it for about 6 months, but then I kinda "fell off the wagon" and started eating and drinking some things I really shouldn't have. I sincerely believe this was the onset of my fistulas and abscess, but don't tell the GI doc's that! My mom and myself were trying to explain this to the doctors, and one said something to the effect that there are no scientific studies showing diet can have any effect on Crohn's Disease remission, etc. I just kept arguing with him, because he had no idea!! If he had been in my shoes and experienced going from a complete flare (going 5-6 times a day, pain, etc.) to complete remission (one fully formed stool every day or every other day, energetic, feeling wonderful), he would have been a believer!! What harm can come from suggesting a simple diet change? Here's to hoping the doctors wise up!
Brittany
 
Currently taking: Humira 40mg/every other week, Imuran 50 mg/day, Zoloft 50 mg/day, vitamins and supplements, Phenergan and Lortab as needed, prednisone tapering down
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 8/4/2009 7:26 PM (GMT -7)   
On a positive note, MY doctor has always tried to keep me off most medication and on a diet that he recommended. It includes probiotics (through yogurt), fibre (when I can tolerate it) and as little processed foods as possible. Actually, during my most recent flare, I was the one pressuring him for more medication!!
44 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March this year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
Currently taking: Prednisone 5 mg, Salofalk 2000 mg, Nexium 40 mg, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Salofalk suppositories as needed.


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 8/4/2009 8:59 PM (GMT -7)   
In my case, I honestly dont believe my diet has anything to do with my Crohns activity.  Im sure some foods dont *help* the situation, but I dont have any trigger foods.  I think my smoking cigarettes is a huge part of it, although Ive gone from a pack a day down to 2-5 a day and still have no relief.

Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Imuran 50mg, Vitamin B12 (injection), D, and C tablets. Fish Oil Tablets, Cats Claw, Slippery Elm, and Reishi.
 

westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 8/5/2009 4:44 AM (GMT -7)   
hmmm... My GI doctor has always said that diet can help or hurt. He suggested probiotics to me.
He is also the one that first told me about going on liquid elemental diets during flares as it can sometimes induce remission. Too bad this only helps me for small flares. Though it did keep me going for 2 1/2 months this past year.

He is a believer in low residue diets and has not mentioned SCD or anything. But then again I seem to respond to low residue (or atleast I used to). But he has always seemed to be open to alternative methods.

Many doctors that I have come across are open to using methods other than drugs. It really comes down to the doctor, I think.
Possibly it is different in countries where doctors do not get paid by the drug companies and nothing is privatized.
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.
Fibromyalgia (allergic to Lyrica)

Tried: Pentasa, Cholestyramine, Asacol

Presently taking: now on Remicade, Imuran, probiotics, calcium, B12, nortryptiline.
For asthma I take Advair 250, singulair


Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 8/5/2009 6:14 AM (GMT -7)   
My GI has been fab, he referred me to a dietician (without me asking) and she has placed me on a strict low residue diet and I'm being monitored. I think it is helping. Although it is difficult to tell because of all of the meds that have come beforehand. But he has ben very proactive for exploring all potential treatments.
The dietician is a firm believer in elemental diets over steroids, she says that as well as helping with the inflammation it aids mucosal healing, where as the steroids only deal with the inflammation, especially in the case of severe flares.
I think I have an element of IBS aswell and I'm hoping she'll be able to help with that.
From what I've read on here things are approached very differently in the UK, Having worked in the NHS for 8 years now, I think generally it work pretty well when you need it for big issues, (not so hot with more minor ailments).
30 year old, female.
Finally diagnosed with severe ulcerative proctitis, Mar 2009. (Doc unsure if it's Crohn's).
?2 fistulas, seton fistulotomy july 2009, 2nd fistula ?currently dormant.
Currently taking, 1200mg asacol TDS, 1g Pentasa supp at night, Probiotics, zinc supplements, Cod liver oil.
Past meds: prednisolone, colifoam ememas.


Marlowe
Regular Member


Date Joined Aug 2009
Total Posts : 31
   Posted 8/9/2009 10:48 PM (GMT -7)   
I work for a GI and I have Crohn's too. At our office we have a registered dietician that works with our patients on their diets. Food doesn't cause flares but it can exasperate it. In other words our gut might be inflammed and we aren't feeling any symptoms but then we eat something and whammo it makes the flare even worse! We have many patients who stop their medicine to go on diets such as the makers diet. These patients tend to come back in worse shape. If you are looking to England's approach they are now setting up a nation wide standard to treat IBD (Crohn's and Colitis) and the approach you mentioned is not one of the treatment options used to induce remission. Plus keep in mind the IBS is at totally different disease and is treated differently too.

Treatments change over time-Just think in the 1950's one of the treatments or ulcerative colitis was have a lobotomy! The link below is to an article that appeared in JAMA:

http://jama.ama-assn.org/cgi/content/abstract/160/15/1277

So you might consider that the reason why doctors don't use diet to control Crohn's or UC is because it was determined it didn't work.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/9/2009 10:57 PM (GMT -7)   
Researchers for crohn's and colitis in canada have not yet ruled out food/diet as a possible trigger for IBD
 
....also,

There is evidence from studies performed on rats, guinea pigs and monkeys which indicates that degraded carrageenan (poligeenan) may cause ulcerations in the gastro-intestinal tract and gastro-intestinal cancer.[14] Poligeenan is produced from carrageenan subjected to high temperatures and acidity. The average carrageenan molecule weighs over 100,000 Da while poligeenans have a molecular weight of less than 50,000 Da. A scientific committee working on behalf of the European Commission has recommended that the amount of degraded carrageenan be limited to a maximum of 5% (which is the limit of detection) of total carrageenan mass. Upon testing samples of foods containing high molecular weight carrageens, researchers found no poligeenan.[15]

A recent publication[16] indicates that carrageenan induces inflammation in human intestinal epithelial cells in tissue culture through a BCL10-mediated pathway that leads to activation of NFkappaB and IL-8. Carrageenan may be immunogenic due to its unusual alpha-1,3-galactosidic link that is part of its disaccharide unit structure. Consumption of carrageenan may have a role in intestinal inflammation and possibly inflammatory bowel disease, since BCL10 resembles NOD2, mutations of which are associated with genetic proclivity to Crohn's Disease.

Foods/diet may not only exacerbate symptoms of IBD but they could very possibly be triggers so one cannot say one way or another that diet/food has no impact on IBD, it's certainly does with IBS so it wouldn't surprise me if ispecific foods/diet is strongly linked to IBD as well....also, because IBD is so individualistic triggers for each patient could likely vary.

:)


My bum is broken....there's a big crack down the middle of it! LOL :)


Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 8/9/2009 11:43 PM (GMT -7)   
If you bowel is already inflammed it can not help having foods that are partially digested scrapping past it, I'm still on the low residue diet for the time being.
It's a very strict version intended to reduce frequency and stool volume. It wouldn't be of any use if you had a wheat or dairy intolerence. In my case it definately seems to be helping and I'm hoping I'll be able to start adding in foods soon.
The dietician views it as an aid to achieveing remission in conjuction with meds. It's resting the gut and giving a better chance to heal without resorting to a liquid or predigested diet.
She certainly does not advocate stopping meds.
The approach my GI is using for my meds is as outlined in the NHS guidlines for the UK, but he is also considering other alternative options, it's a shame that more medics can't be a little less restricted by the meds and guidelines. I do feel like I have been very lucky.
30 year old, female.
Finally diagnosed with severe ulcerative proctitis, Mar 2009. (Doc unsure if it's Crohn's).
?2 fistulas, seton fistulotomy july 2009, 2nd fistula ?currently dormant.
Currently taking, 1200mg asacol TDS, 1g Pentasa supp at night, Probiotics, zinc supplements, Cod liver oil.
Past meds: prednisolone, colifoam ememas.


ryan_jordan
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 8/15/2009 11:38 AM (GMT -7)   
I have had really good success using Wolfgang Lutz's Diet from the book Life Without Bread. For 3 years I never achieved remission, but after sticking to this diet for some time I would say I'm in remission. I also use the drug LDN, but I think the diet plays a bigger role.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/15/2009 4:54 PM (GMT -7)   
A common condition associated with Crohn's disease is SIBO (Small Intestine Bacteria Overgrowth). It results from reduced peristalsis, allowing bacteria to overgrow in the small intestine. The symptoms are as follows:
The symptoms of SIBO include:

* excess gas,
* abdominal bloating and distension,
* diarrhea, and
* abdominal pain.

A small number of patients with SIBO have chronic constipation rather than diarrhea. When the overgrowth is severe and prolonged, the bacteria may interfere with the digestion and/or absorption of food and deficiencies of vitamins and minerals may develop. Weight loss also may occur. Patients with SIBO sometimes also report symptoms that are unrelated to the gastrointestinal tract, symptoms such as body aches or fatigue. The symptoms of SIBO tend to be chronic. A typical patient with SIBO can experience symptoms that fluctuate in intensity over months, years, or even decades before the diagnosis is made.

Taken from MedicineNet.com
In looking for causes of reduced peristalsis, apart from partial blockage and intestinal pain or pain meds, I discovered a book that spells out the impact of undigested foods (Clinical nutrition in Gastrointestinal Disease). It seems that undigested food will cause reduced peristalsis presumably to allow for proper digestion and absorption of the food. Reduced peristalsis results in SIBO. Food intolerances are probably universal in Crohn's - just ask anyone here what foods they avoid. Foods that are not tolerated cause inflammation and this interferes with digestion of that food - resulting in reduced peristalsis, which causes SIBO. It looks like a smoking gun to me.

ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 8/15/2009 5:04 PM (GMT -7)   

Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 8/15/2009 8:37 PM (GMT -7)   
The only tests so far are a breath test for hydrogen (which is not a 100% certain test) and a sample test which is rarely done except in research settings because it is expensive and requires a skillful operator. The breath test along with symptoms is the only diagnostic tool so far.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/15/2009 8:44 PM (GMT -7)   
That's crazy. A lot of the diagnostic tools used to measure the extent and severity of disease activity, look for exactly the same symptoms as are displayed by patients with SIBO??! I'm thinking of things like abdo pain and d and weight loss (in the CDAI) and gas and bloating (in that quality of life questionnaire that they often make us do).

That MATTERS. To stay on Humira, I have to keep a CDAI diary and stay at or below a certain score... but they don't do SIBO tests to rule out whether our symptoms are being caused by disease or bacterial overgrowth?

Grrr.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/15/2009 9:37 PM (GMT -7)   
Well, it sort of fits... Someone here (CrazyHarry?) said once that Remicade was first developed to treat toxic shock syndrome. Anti-TNF drugs can limit the body's immune response to bacterial overgrowth, so it would limit the more severe immune reactions to SIBO.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/16/2009 6:35 AM (GMT -7)   
I am currently being treated for SIBO. I did no tests but the doctor believes that is what has been going on with me. My symptoms were ALOT of gas and bloating all of a sudden. I had it about 2 weeks when I finally called my doc. He put me on Cipro and had me change to a better probiotic and I feel much better already. I can eat better now without the gas and bloating afterwards. I am still fatigued but I really think that is because of other health issues in combination with the Crohns. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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