Why Don't GI Doctors Take The Role Of Diet Seriously?

[cmack]

Have you considered stress as a factor? I know it negatively impacts my body. There are certain foods that cause trouble when I'm stressed, such as potatoes, carrots and chicken eggs.

 

[InstantCoffee]

Have you considered stress as a factor? I know it negatively impacts my body. There are certain foods that cause trouble when I'm stressed, such as potatoes, carrots and chicken eggs.

If stress was a factor I would never see improvement, because I'm too busy stressing about eating the right thing.

 

[cmack]

I hear that. I guess we're all different. I would talk to your doctor about stress though, and see if he will prescribe something to help. I take diazepam 5mg and it has helped greatly to reduce stomach upset caused by stressing too much. If I can think of any other ideas I'll be sure to share.

 

[Scipio]

In my experience the best way to get your body able to tolerate foods more or less normally is to get and keep the Crohn's in remission. Other than modifying your diet, what else are you doing to control your Crohn's? Does this specialist have you on any medication?

I've conveyed this to him, there is no pattern and it seems purely degenerative. Every year I can eat less.
And this is apparently a Crohn's specialist so I don't know where else to go with it.

 

[my little penguin]

Other ideas what is defined as a fail for foods ?
Belly pain , increased diarrhea, blood ?
Or is it increased sed rate /CRp , increased fecal ?

We went through similar for ds
Belly pain meant food was a fail
Pulled all foods went formula only two weeks
Added in one foods at a time for three days
Rinse repeat
Tried all other diets(fodmaps ,crohns exclusive , no wheat /gluten etc...)
Testing crohns aggressively (Stelara plus mtx )
And sticking with whole unprocessed foods as much as possible
Belly pain is still there but not as bad
Exercising (seeing pt ) has also oddly helped
Good luck

 

[InstantCoffee]

In my experience the best way to get your body able to tolerate foods more or less normally is to get and keep the Crohn's in remission. Other than modifying your diet, what else are you doing to control your Crohn's? Does this specialist have you on any medication?

No, I don't respond to humira or remicade, I tried medical marijuana and he's not willing to explore LDN. He wouldn't even write me for medical, I had to go elsewhere for it.

I think he said something about not knowing what to give me because my condition is more or less under control when I'm eating the right diet, I don't present with inflammation, just elevated CRP at times, but not to a concerning amount.

 

[Scipio]

Have you or your doc considered any of the newer biologics such as Stelara or Entyvio? They work by different mechanisms than do Humira and Remicade, and some people who failed the anti-TNFs have gotten their disease into remission with those newer drugs.

No, I don't respond to humira or remicade, I tried medical marijuana and he's not willing to explore LDN. He wouldn't even write me for medical, I had to go elsewhere for it.

I think he said something about not knowing what to give me because my condition is more or less under control when I'm eating the right diet, I don't present with inflammation, just elevated CRP at times, but not to a concerning amount.

 

[InstantCoffee]

Have you or your doc considered any of the newer biologics such as Stelara or Entyvio? They work by different mechanisms than do Humira and Remicade, and some people who failed the anti-TNFs have gotten their disease into remission with those newer drugs.

I will talk to him about this, I need to book a follow up as I'm well overdue, I've just been putting it off because honestly nothing ever gets done at them, I don't come away with new treatment options or anything.

 

[exit4]

I did a lot of unconventional stuff to see if something might help. Things like homeopathic remedies (which I now realize is just expensive water), dream analysis, a Aervedic diet, acupuncture, Probiotics, prebiotics, gum mastic, licorice, special fiber, glucosamine, L-Glutamine, flax oil, S. Boulardii (another special probiotic).
I likely spent about six months doing this before I gave up. The results weren’t there and I had no money left for the expensive supplements.
All these years, I tried to stay on a more natural approach to healing, but that didn’t help. Changing what I ate, taking supplements, doing meditation, none of it was making a dent in this disease that had hijacked my life.
Foolishly, I ignored recommendations to go on Remicade, one of the “Big Guns” in treating IBD and I continued to suffer.
I had blood tests done by my family doctor; the results were terrible. I was anemic from the bleeding and my inflammatory markers were through the roof. I was referred to another GI specialist, which would be the start of my recovery.
I was put on the steroid Prednisone.
Within DAYS, I was feeling well. I was able to eat, and thanks to the monster appetite it causes, I was putting on weight fast. That was followed by Humira and 4 years of ALL Crohns symptoms free.

 

[TraceyA]

I also feel frustration that the doctors seem to ignore the obvious fact of food when it comes to IBD. All of you on this thread are understandably focused on diet choices, as am I, but I am also interested in another contributing factor - digestive juices like enzymes and stomach acid.

Stomach acid is needed for three reasons: to assist in the breakdown of protein, especially from meat, to sterilise food from contaminating bacteria and to assist in the absorbtion of iron and calcium.

Most, if not all, crohnies are iron deficient so the question remains as to how much of this is simply due to a lack of stomach acid?

Low stomach acid (hypochlorydia) may be a contributing factor in developing CD in the first place given that a long-gone gut infection may have set things rolling. The bacterial infection such as salmonella, listeria, etc evaded the body's acid (and bile) defence. The immune system was then unable to effectively clear things up either due to a genetic malfunction or simply an adaptive immune system error. Now the gut has to deal with damage from the initial infection and the extra load from un-neutralised bacteria.

I think the reason that EEN is successful in acheiving ileal remission is because it is not laden with bacteria and comes semi-digested. Stomach acid and perhaps some other enzymes are not required. The immune system has a better chance of clearing things up because it has stopped being bombarded with bacteria.

I also think that people find the fermented foods like kimchi and apple cider vinegar are helpful because of the acid they contribute.

In my research to date (ie intensive web search of proper research) very little has considered the digestive chemistry as a major player. When I asked our gastroenterologist (head of a teaching team at a major hospital and doing IBD research) he said he knew of no studies connecting hypochlorydia with CD. As far as I can see no studies have really looked at stomach acid from any perspective, to discover whether hypochloridia is common or uncommon among crohnies.

One Melbourne study from 2007 investigates the "Influence of Gastric Acid on Susceptibility to Infection with Ingested Bacterial Pathogens" and finds that "gastric acid plays a clear role in clearing ingested bacteria." The same study also notes that "few systematic experimental and epidemiological studies have been performed to determine the contribution of gastric acid to infection resistance."

I heartily wish that some research is undertaken in this area. It may be found that the diets and immune system manipulations are not required if the gut chemistry is attended to first.

My daughter tried a simple home test for stomach acid with bicarb soda which indicated she might be low. I would like her to try Betaine HCL supplements with dinner but she is resisting this idea. I'd love to hear from anyone who has tried this approach for their Crohn's.

Any thoughts or knowledge about the gut chemistry?

 

[cmack]

I believe it all plays a role. Good post.

 

[onolox]

The thing is, diet and crohn's: Every person has different allergies to food. Because of this doctors don't want to go this route, it's too much effort for low payment.
I think Crohn is as exacerbation of the normal food allergies that everyone has.
Out there exists tests to check to what foods the individual have more inflammation, but they are poor, maybe in 5~10years we can have solid tests.

 

[BlueSky]

I've heard repeatedly from doctors that there is "no evidence" that diet plays a role in IBD. A nurse once whispered to me "there's no evidence because in the United States there are no significant studies on diet and IBD."

 

[momsa]

I've heard that dietary changes are less effective for colonic Crohn's than ilial disease. Is this true in anybody's experience?

 

[Scipio]

I've heard that dietary changes are less effective for colonic Crohn's than ilial disease. Is this true in anybody's experience?

Hard to say based on personal experience. I have ileal Crohn's and diet has never really affected my disease one way or the other as far as I can tell. I haven't been able to identify any trigger foods, and I haven't been able to identify any foods that help calm a flare-up either. My disease responds much more to medication than it does to diet.

 

[Stressedmom]

Robynne Chutkan, MD is one of the few who does take the relationship between Crohn's treatment and diet seriously.

https://robynnechutkan.com/topic-area/crohns-disease/

 

[ncman]

The link between diet + CD has been well documented by the work of Professor Hunter (crohns.org.uk), unfortunately he's since retired and is doing other things, but elemental diets are a really underused therapy. The tricky thing is maintaining the remission over the longer term.

 

[Jo-mom]

@Scipio - same with my son - diet doesn't seem to make any difference with him nor does probiotics. He also has ileal Crohn's.