Peter D.R. Higgins, MD, PhD, MSc
Director, IBD Program
University of Michigan
@ibddoctor
The Credibility Gap on Diet in IBD
The Challenges of Diet Research in IBD
Engaging patients on Diet
Flare diet – but return to full diet
Evidence-Based Approaches
Nutritional deficiencies
Symptom Interventions
Patients are INTERESTED in Diet Relationship to IBD
#1 reason for calling CCFA Help Telephone line
Top Concern on Facebook Chats
Often looking for dietary advice
Patients correlate changes in diet with food-related changes in symptoms
Often without changes in disease activity
Food-related Symptoms result in Patients Using
Extreme Diets
SCD, Paleo Diet, macaroon diet, macrobiotic
Many restrict important nutrients
Many spend lots of $$ on supplements
We need to prevent self-harm
Reduce antigens, toxins, or aggravating things
Elemental diet
Defined diets
Alter bacterial composition in the intestines
Food = original Prebiotic
Alter gas production/fluid retention
One Simple Trick web Ads
They Don’t Want You to Know Ads
Denigrating Western Medicine
Go to Peru, drink frog venom and be Cured!
Promising a cure
Selling Snake Oil is VERY Profitable
Drink liquids containing defined sugars
Image patients’ small bowel water content
Clear effects of sugars and fructans occur
AJG 2014; 109:110–119
I am so bloated and uncomfortable. This doctor is clearly an idiot who knows nothing about IBD. I’m going to get that diet book.
Diet does not affect inflammation in IBD
Macaroon diet
Specific Carbohydrate Diet
Initially proposed by Dr. Sidney Haas as Rx for celiac disease in 1924
Subsequently debunked – gluten is cause
But it will not die
Breaking the Vicious Cycle, Elaine Gottschall
Paleo Diet
Fruitatarian diet
Juicing
Kill. Eat.
Form LLC.
Curing Pancreatic Cancer
With Diet
Patients seek alternative therapies, diet cures
Patients severely restrict diets and nutrition
Patients STOP effective anti-inflammatory therapies
Spend their money on alternatives
Can’t afford copays for effective medications
>
Fruits
Vegetables
Red Meat
Whole grains
Refined grains
Dairy
Nuts
Include (%) Avoid (%)
40
17
4
24
57
20
26
44
22
80
56
60
69
79
Internally
Conflicting
32
21
-
18
-
-
17
Hou et al. CGH 2014:12(10)
•19 studies- Evaluated diet patterns prior to
IBD diagnosis
•2,609 IBD patients
Increased IBD risk:
Total fat 2-3X
PUFA
Omega 6
Meats
2-6X
2-3X
3-4X
Decreased IBD risk:
Fiber < 1/2 X
Fruits < 1/2 X
Hou et. al. AJG 2011;106
More Inflammation Less Inflammation
Hou et al. Therapy. 2010, 7(2)
High rate of food avoidance among IBD patients
89% of Crohn’s disease
84% of ulcerative colitis
40% at Cedars-Sinai with at least 3 food restrictions
Common to avoid dairy, gluten, vegetables, and red meat, and poultry.
Both CD and UC patients avoided nuts
Exacerbation of symptoms is the most commonly cited reason for food avoidance among IBD patients
Issokson, K., et al. AIBD, Poster 89
Percentage of Crohn’s disease Patients who reached recommended daily dietary intake by nutrient
Nutrient
Fiber
Calcium
Selenium
Vitamin A
Vitamin C
Vitamin D
Vitamin E
Vitamin K
CD Patients
15
25
6
21
47
10
5
0
Controls
38
61
80
40
73
26
24
0
Sousa Guerreiro et al. Am J Gastroenterol. 2007 (11)
7% of hospitalized IBD patients meet criteria for severe protein-calorie malnutrition
Associated with 3.5 fold increased mortality
Associated with doubled LOS, >2x hospital charges
IBD patients in clinical remission vs. controls
Decreased body cell mass vs. controls
Decreased handgrip strength vs. controls
Effects larger in patients with elevated CRP
Nguyen IBD 2008; 14:1027.
Valentini Nutrition 2008; 24:694–702
Diet and IBD
Medline search – nutrition, RCT, UC, CD
99 publications - only 11 are actually Randomized trials
ZERO positive studies.
ZERO
Elemental (Peptamen) vs. steroids in CD, N=22
2 weeks of Rx, no placebo control
Possibly some benefit ESR 21 ’ 16.
Not clinically meaningful….
Fructo-oligo-saccharides (prebiotic)
N=103, placebo controlled. No benefit
26% dropout rate in FOS arm vs. 8% placebo arm
Due to increased BLOATING
APT 1997, 11: 735-40.
Gut 2011, 60: 923-9.
Cochrane meta-analysis
15 trials, totaling 334 patients
Enteral nutrition therapy for Crohn’s disease was
3 times LESS effective than steroids
Forms of enteral therapy
Elemental = non-elemental = polymeric
Low fat = high fat
Type of fat did not matter
ENT not very effective in inducing remission
Very rare to have objective endoscopic evidence
Very poor adherence
Zachos, M., et al, Cochrane Database Syst Rev. 2007
Zero prospective RCTs with mucosal healing endpoints for EEN.
In contrast, anti-TNFs proven in adults and children with multiple large RCTs with clear evidence of mucosal healing.
Evidence base for
>>>
EEN
Levine, et al, IBD 2014; 20:278
Grover, et al., J Gast 2014; 49:638
But…GROWTH-CD – not randomized, not blinded.
But, but….some healing in 34 - not randomized, not blinded.
But, but, but….it probably improves microbiota!
Actually less diverse.
A proper CD RCT with objective endpoints is needed
Anti-TNF is the standard of care
Can EEN beat this OR add to this? – to be determined.
Levine, et al, IBD 2014; 20:278.
Grover, et al., J Gast 2014; 49:638.
Gerasimidis, et al., IBD 2014; 20:861.
Need RCTs with adequately large sample size
Requires blinding
Need a convincing placebo/sham diet
Needs to be identical to intervention diet in every way
(except intervention), including texture and taste .
This is difficult and expensive
For full diet, you have to replace ALL food all patients would eat, including snacks, for the length of the study
Very expensive
Patients can not cheat, sample “outside of study” food
Have to provide interesting, tasty variety of food
Expensive
For supplements, you have to assume:
Supplement will be so powerful that it will overwhelm the effects (noise) of all the other food patients eat
People eat very diverse diets
Potentially a lot of noise in study – larger sample size needed
Sham supplement must be matched, convincing
No intellectual property. Hard to patent food.
Exception – trademarked cakes in Austria
No one makes a profit if you can’t protect your ideas.
No incentive to develop true evidence-based,
FDA-approved nutritional therapy
Congress has undermined the Intent of the Pure Food and
Drug Act
Unfounded medical claims about “nutriceuticals” or
“supplements” or “medical foods”
Promoted by paid celebrities like Oz
No evidence base or rigorous research needed
Certainly not peer review
Definitely not FDA Approval
Incentives align to get an appealing product on the
Dr. Oz show and rake in profits without any evidence
Engage patients on diet
Differentiate between symptoms and control of inflammation
Encourage them to control symptoms with diet
But also control inflammation
Fish Oil – EPIC 1 and EPIC 2, N=738
2 Rigorous RCTs of omega 3 fatty acids in Crohn’s
30
20
10
0
60
50
40
31.6
35.7
47.8
48.8
Omega3
Placebo
EPIC-1 EPIC-2
Feagan et al. JAMA. 2008;299(14)
Treating Nutritional Deficiencies
Iron
Vitamin D
Vitamin B12
Engage patients on these
Test regularly
Reassure if normal
Supplement when deficient
Folate
In patients on methotrexate or sulfasalazine
Reduces spina bifida in future children
Calories
Make sure meeting protein and caloric needs
If that is hard with regular food
Consider liquid supplements
Keep cost low
Anything else?
No evidence
Gearry study of Low FODMAP diet on IBD Symptoms
52 CD patients, 20 UC patients enrolled
No controls
No randomization
Retrospective recall assessment of symptoms
Roughly 50% responded
Improvement seen in overall abdominal symptoms, abdominal pain, bloating, passing gas, and diarrhea
No evidence of change in inflammation
Gearry, et al. Journal of Crohn’s and Colitis, 2009, 3: 8-14
A bad study
No controls
No comparison diet
Not prospective
Not a validated measure
Basically a case series
No evidence of harm
Why do it?
Allows you to regain credibility
Recapture patient from Rasputin.
No NG tube, Low cost
By treating symptoms, you help the patient engage on inflammation.
History of
Bloating
Distension
Lots of Gas
Strictures
Adhesions
Slow motility
Lacking IC valve
History of SIBO responsive to antibiotics
And Afterward
Most patients report that they benefit from restricting diet during flares
Less input –> Less output, fewer symptoms
Bland food – fewer symptoms
Have bad reactions to foods they have tolerated in the past
Liquid diet often better tolerated
Limit caffeine (increased motility)
Limit caffeine and alcohol (decreased hydration)
Problems
Increased risk of dehydration
Rapid and significant malnutrition
During a flare they need more calories
May continue to restrict after a flare
Listen to your body
Limit what gives you trouble
Often spicy foods, fats
Liquids often >> solids
Avoid dehydration
Not just water
Salt, sugar, rice in ORS
Get calories and protein into patient
Inexpensive supplements
High caloric density
Options
Address lactose intolerance
Gradually return to full diet after flare
Start slowly, small portions
Get over fear of particular food/PTSD
Most patients learn these rapidly
Vomiting provides powerful negative feedback
Low residue diet: avoid
Raw Vegetables
Fruits with skins
Insoluble Fiber
Beans
Tough Red Meat
OK
Lean protein (fish, chicken, eggs)
Pulp and skin free fruit
If you want to eat fiber
Cut it across the grain into < 1 cm lengths
Cook it until soft
Important to achieve adequate protein and calorie intake
Often this will require temporary liquid diet
Teach about calorie and protein goals
Help patients find tolerable protein/calorie supplements
Identify low cost versions
Instruct and have downloadable handouts
Flare Diet
Obstructive low residue diet
Have dietician involvement
Low FODMAP Diet
Low oxalate diet for renal stones
Complicated and hard to accomplish by patient
Foods are NOT labeled by FODMAP content
Requires diet diaries and analysis.
Determine which FODMAPs patient can tolerate
Determine threshold for symptoms for each
Why Recommend Restricting
FODMAPs?
30% of IBD patients meet Rome criteria for IBS
Could be post-inflammatory enteric neuritis
→ hypersensitivity
Many, many patients try expensive or fad diets
SCD, Paleo Diet, macaroon diet, macrobiotic
Many restrict important nutrients
Many spend lots of $$ on supplements
We have to prevent self-harm
And around 50% do benefit
Especially if gas, bloating, distension are active symptoms
Especially if abnormal anatomy
Crohn’s surgeries, strictures, fistulas, etc.
Patient volume/interest
RDs, preferably embedded in clinic
Payor mix – mostly BCBS coverage and some self-pay
Lauren van Dam Emily Haller
• Typically see 3-4 NPs, 4 RVs per day
• 50% BCBS
• Some self-pay
• Limit four billable visits per year for BCBS
FODMAP teaching, start restriction
Food diary
Review and
Symptom response
Targeted small dose reintroduction of selected
FODMAPs
Established tolerance by
FODMAP and dose with least restrictive diet
Engage patients on diet
Largely to prevent self harm
Teach maintenance of protein and caloric needs
Teach maintenance of hydration
Bland flare diets – but return to full diet
Low FODMAP for selected patients
Low residue for patients with obstruction
@ibddoctor