I am new to this forum and new to being a parent with 2 kids who have been diagnosed with Crohn's disease. I have been researching the Anti-inflammatory diet and the low-residue diet. They seem to contradict each other, but they both seem to make sense. My 18 year old daughter was just diagnosed this past week and she has been having all of the classic GI symptoms, the doctor says that her disease is pretty aggressive. It makes sense to me for her to be eating a low residue diet because of all the inflamation in her gut but then again, shouldn't we be trying to prevent more inflamation by eating the healthy foods that are listed in the anti-inflammatory diet? Thoughts?
Low-residue vs. Anti-inflammatory
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crohnsinct
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Low residue diet is simply to be easier on the gut as fiber and various foods can aggravate an already inflamed system. You are right that a lifelong diet of low res foods would indeed promote inflammation but on a short term basis it won't do any damage and really making her feel better is te over riding concern at this point.
Anti inflammatory is really the way to go to treat the inflammation but isn't something you would introduce during the acute stages of the disease.
My daughter did low res while really ill and then after about 6 months we researched various diets and came up with the anti inflammatory diet (which is basically just all whole foods nothing processed) and that has really supported her medical treatment well.
Anti inflammatory is really the way to go to treat the inflammation but isn't something you would introduce during the acute stages of the disease.
My daughter did low res while really ill and then after about 6 months we researched various diets and came up with the anti inflammatory diet (which is basically just all whole foods nothing processed) and that has really supported her medical treatment well.
I agree with CIC. We were instructed to put my son on a low residue diet when he was first diagnosed. Once in remission, he could return to more healthier eating and away from all the white stuff. Unfortunately, once my kids got a taste of white bread, they didn't want to go back to higher fibre bread! So, I allow the white but buy thin sliced bread, and limit how much they get.
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Hi. My son had a hard time getting into remission and he did EEN and then SCD, at suggestion of his dr who was doing research on diets. He has done very well on this, aside from having to look for things that are allowed when he is away from home. I think he is over the hard part of learning the diet and now travels, goes to camps, whatever, sometimes without me hovering!
The IBD AID is getting a lot of publicity. I believe some new studies about it are scheduled to be published early next year. We wanted my son to join an SCD study but his scopes, labs and symptoms were too good to qualify.
Could you find an IBD nutritionist who can work with you and the dr to advise on what, when and how? Our practice had one on staff and yours may too. I've learned some kids do diets short term, long term, in conjunction with formulas or not, with meds, before meds, many combinations.
Best to both of your kids. Crohns sucks.
The IBD AID is getting a lot of publicity. I believe some new studies about it are scheduled to be published early next year. We wanted my son to join an SCD study but his scopes, labs and symptoms were too good to qualify.
Could you find an IBD nutritionist who can work with you and the dr to advise on what, when and how? Our practice had one on staff and yours may too. I've learned some kids do diets short term, long term, in conjunction with formulas or not, with meds, before meds, many combinations.
Best to both of your kids. Crohns sucks.
if you look at IBD-DIET in my signature, look for table 2 for the food chart. Stage one is pretty low residue to me. Pureed and cooked vegetables and not much grain (except chia or flax only if tolerated). I personally have more faith in IBD-AID than white bread and pasta diet.
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DS did low residue at dx with formula as a supplement.
He now does a partial enteral nutrition with the crohns exclusive diet
It's similar to IBd -aid and scd but has some differences but still based on reducing inflammation and increasing specific gut bacteria etc.,.
So far DS has been on it since April with his humira and mtx
He now does a partial enteral nutrition with the crohns exclusive diet
It's similar to IBd -aid and scd but has some differences but still based on reducing inflammation and increasing specific gut bacteria etc.,.
So far DS has been on it since April with his humira and mtx
crohnsinct
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While I am a HUGE advocate of diet for a lot of reasons not the least of which is overall health....so far no diet has been proven effective with endoscopic evidence. That doesn't mean that it doesn't happen, just that studies either haven't been able to prove the effectiveness or that the studies just haven't been done.
So far my younger daughter has not reached remission with MTX or with the addition of Entocort. We are weaning Entocort and she is down to 15 mg's of Mtx. She just completed 5 weeks of EEN and has normal fecal cal...she is adding food back in slowly on the IBD-AID diet. If we stick withthis and biomarkers and scopes show remission I am crediting the diet.
Optimistic: A while ago you were waiting for scopes for your son to confirm remission. Are the scopes you speak of for the study the ones you were waiting or? If so, am I understanding correctly that your son is in full remission (mucosal healing) with diet alone?
So far my younger daughter has not reached remission with MTX or with the addition of Entocort. We are weaning Entocort and she is down to 15 mg's of Mtx. She just completed 5 weeks of EEN and has normal fecal cal...she is adding food back in slowly on the IBD-AID diet. If we stick withthis and biomarkers and scopes show remission I am crediting the diet.
Optimistic: A while ago you were waiting for scopes for your son to confirm remission. Are the scopes you speak of for the study the ones you were waiting or? If so, am I understanding correctly that your son is in full remission (mucosal healing) with diet alone?
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Crohnsinct,
Yes, scopes confirmed muscoscal healing.
Yes, scopes confirmed muscoscal healing.
crohnsinct
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Wow! That's great! You are the first one I have heard say that! Shame you couldn't get in on a study so those results would get published. Hopefully we are right behind you but since she is on Mtx no chance anyone will credit diet.
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The pathologists who read the scopes as a second opinion had seen 5 similar cases recently. My son is a bit unusual. His FCP never went higher than 300 even when he was in hospital for weeks losing 25 pounds, so we know that is not a great marker for him. He also was negative for Prometheus but I'm not sure how reliable that is. His first scopes were a wreck.
I so wish he could do a study, of any kind, just to help
Find something that works consistently. Treatment effectiveness seems so random. Plus I have child #2 being watched.
I don't know what caused any of this. He did have flattened villi initially that were completely healed in last scope. We will stay the course with scopes every 6-12 months and labs every 3 months.
I so wish he could do a study, of any kind, just to help
Find something that works consistently. Treatment effectiveness seems so random. Plus I have child #2 being watched.
I don't know what caused any of this. He did have flattened villi initially that were completely healed in last scope. We will stay the course with scopes every 6-12 months and labs every 3 months.
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Very interesting!! I'm so glad diet is working, this is also the first story I've heard of it working without meds. Fwiw, my daughter's FC has never been higher than 480 and her first scopes weren't great either. We focus on "her normal" vs. other kids' normal.
Keep us updated!!
Keep us updated!!
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We were and are fully ready to do meds if we need to. Honestly we would do anything if all hell breaks loose again. The problem with any IBD is you always have that in back of your mind. He gets a sore throat and I interrogate him looking for other issues, or has a sore knee from practice and I think the joint problems are starting...
Despite the inflammation being gone,there are days I see he drinks more formula that normal. Does he self medicate? Maybe. There are no other signs he has a problem and he is has resumed heavy travel sports so I can't figure out if fatigue is driving and sometimes flying on weekends, being a normal teen, or something more. Always on my mind when I know I should be happy or just accept this breathing time.
I wish I knew more about Prometheus. I can't find a good answer about false negatives.
Despite the inflammation being gone,there are days I see he drinks more formula that normal. Does he self medicate? Maybe. There are no other signs he has a problem and he is has resumed heavy travel sports so I can't figure out if fatigue is driving and sometimes flying on weekends, being a normal teen, or something more. Always on my mind when I know I should be happy or just accept this breathing time.
I wish I knew more about Prometheus. I can't find a good answer about false negatives.
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Yep self medicating here as well
Ds will increase his formula
Or not ask for any solids for the day
Ds will increase his formula
Or not ask for any solids for the day
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Welcome to the group. I agree with you. I think if we ate healthy it might reduce the chance of inflammation. At the same time, I can't eat all fruits and vegetables. I don't know specifics about the various diets for Crohn's.
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I haven't added my story yet. Up until today i have been struggling trmendously with the diagnosis of both of my kids being diagnosed this year with Crohn's. It has turned our world upside down. Now that you mention it, i feel like i could share my story without totally losing it so it will come very soon. Thank you for asking.
