baistuff - I agree with you that pharmaceutical companies provide vital funding. But is diet so much harder to research than medications? If the main issue is controlling other factors, isn't that just as true for medications? And the same with deciding what counts as effective improvements when assessing results? And accounting for placebo effects? It may be harder to convince people to stick to a diet than to take a pill in order to conduct research, but if all the other difficulties faced in research can be overcome adequately when researching meds, is it that much harder with diet?
I think it is. Many of the med studies have specific exclusion criteria- being on certain other meds, prior surgery, age etc..... it doesn't eliminate all pitfalls but controls for a lot. Keep in mind that many meds go through different phases. Phase I- safety- let's make sure this med doesn't cause you to die, bleed, go into liver, kidney failure. Then if it doesn't we start to look at different levels of response (Phase II/III.) Many even have animal studies completed first. Then We have a control group to make sure the response is real, look for placebo effect, other effects. Then is has to be reproduced. Though many med studies are done at home, many are also done in an MD's office or lab (especially if an IV or SQ med.) Also what are you time controls. If I know Med X will appear in the blood in X time and cleared by the liver, kidney in X time, and it takes X time for this metabolite to build up and do it's thing and those with just inflammatory disease takes X number of weeks to heal, I can conclude that in X weeks, I would expect to see tangible improvement on labs/scope.
How do you design this for a diet? It's not impossible but it's really hard. And a med is usually new product not like food which we already know how we tolerate. And what if someone was at a wedding at accidently just tried a teeny tiny piece of cake? Are they dropped from the study? do they start over? What if they thought was diet soda was regular soda and had corn syrup. Does the amount matter? Where are your cutoffs?
What I am sensing from the forum is that there is a desire to see AWARENESS of the importance of diet out there and research can aide with that. Agreed. I just wouldn't put much stock into any diet study to have implications on an individual level. The SCD study in kids is interesting for sure. I'm sure it has helped many. The fact remains that any conclusion other than "diet is important" would be hard to come by.
I'm not saying don't study it. The more we can learn about IBD the better. I just wouldn't hang my hat on the details of a diet study changing the trajectory of IBD outcomes on an individual level.
Until we know more about the prime cause of Crohn's it's hard to understand why the diet varies from patient to patient, but if we knew the cause we probably wouldn't need to know the diet.
Conversely you can follow the clues of diet backwards.
There's so many factors in diet though. If I improve on a diet it could be elimination of a harmful substance, or inclusion of a needed one.
If it's a trigger food, why is it a trigger? Is it because my bleeding and inflamed intestine can't handle seeds passing through it? Is it because the poor digestion of a simple sugar causes an immune response or overgrowth of harmful bacteria?
There's just so many variables and they could differ for each patient.
If crohn's is caused by a dysbiosis, that dysbiosis could be a little, or a lot different for each patient. The difference in bile salts that break down food can vary. Unfortunately our digestion is complicated and it seems poorly understood, especially with the variety of chemicals in modern food.
If an experimental diet induces remission in 75% of patients, then are the 25% remaining not responsive to diet, or just not responsive to that particular diet?
Then you have cascade effects. Like what if I primarily have gluten sensitivity, and that caused inflammation which caused poor absorption of FODMAPS leading to SIBO which increased leaky gut and caused further sensitivity to amines or other grains? Then did something cause the gluten sensitivity? How far back to the bread crumbs go?
I think it's important to follow all these breadcrumbs, because they'll lead us to answers.