Son in remission. More confused than ever about what to feed him.

[CrohnsKidMom]

My 8 yr old son finished his Prenisone taper last week and continues on MTX injections. His last bloodwork results suggest he is in remission. Up until this point I was giving him a pretty basic diet- soft cooked veggies, low fibre foods, etc. We generally eat healthy anyway, but I'm more confused than ever about what he should be eating now to help keep him in remission. The GI said to just eat healthy, and not to eliminate any one food group. But I'm getting contradicting info from a variety of other sources. Some say to go gluten-free, some say to eliminate dairy. Some say to avoid all acidic foods, like blueberries, salmon, and turkey. Some say bananas are good. Some say bananas are bad. Some say oatmeal is good. Some say oatmeal is bad. Argh! Can anyone help me sort out what I should be feeding my son? Thank you!

 

[my little penguin]

We just go with what our son wants to eat.
Some food may bother him or it may not.
Some kids have different issues with different food.
Food does not cause a flare - it can however make a flare worse.
We do not limit anything for DS except seeds , beans( gas producing and he still has stomach aches), popcorn and nuts ( he is allergic).
His Gi told us only to eliminate popcorn seeds and nuts .
There is no scientifically proven diet that works for crohn's.
So if he is not having issues with it I would leave it.
Being 8 and having crohn's is hard enough let alone taking away food from a child who already is probably having a hard time gaining and growing.


That said we do give DS formula (EN) peptamen jr to try and help give him the extra calories he needs to grow and maintain weight since it only takes a few in he's of healthy small Howell to absorb it vs food which takes a lot of healthily small intestine.

 

[CrohnsKidMom]

Thanks, MLP, that helps. I've just been getting a whole lot of unsolicited advice lately... and from some good sources, I have to say. But they're all telling me a little something different. I'm getting frustrated.

 

[Kev]

I'm sure a lot of people who 'swear' by specific diets (not that I'm going to name any 'specific' diets) will be upset when folks say there is no proof they work. What works for some don't for others, and vice versa. In the medical community, I've met Dr's who say diet doesn't have an impact, where others say the opposite. How do you know? Here is some simple, sound advice... I know it worked for me before I found LDN. A food diary. Track things, learn specific triggers. Everybody is different, and everyone can change... disease waxes/wanes in certain areas of a tract.. In a remission, it might just prove... and this might sound futile.. that there are currently no trigger foods, but at least it proves it. Now, the disease is in remission, but the scarring from it remains. Sooooo, from my personal experience... veto gassy foods, limit/lower fibre (body simply can't digest it... so having it work thru you against, around scar tissue... it doesn't make sense).. and, foods that result in a softer stool... again, it woud get thru scarred areas easier than firmer stools. Yeah, doctors are right.... diet may not cure Crohns (others may argue with that, I won't) but putting just anything thru a disease damaged tract is foolish. Now, I'm sure your son will figure out which foods bother him, which cause pain, which cause gas (at that age, he might not care... but.. nights before school, or church, YOU may want to dictate his diet).. Sometimes he may be willing to bear a little extra pain... sometimes he may need a break. I know that when I was on pred, I felt like superman... and continued to feel that way as I tapered... then after being off it, my disease would rebound. I was never on metho... if the LDN hadn't worked, it was my last option left. But, after my experience with AZA, my GI recognized my concerns with regards potential side effects were worth considering, so she agreed to trial me on LDN. Anyway, I digress. All work and no play make jack a dull boy.. a rigid bland diet when a child (my sons ate whatever I put in front of them, so I never had to deal with picky eaters) is in remission, stable... seems overkill. Learn his triggers, limit the foodstuffs that are going to cause wear/tear (afterall, you want him to get a lifetime of use out of his 'damaged/undamaged' sections of GI tract). We all should eat healthy, but do we all?

 

[CDJ]

I echo very much what little miss penguin has said. Josh is 12 and we don't eliminate any food groups. He can eat pretty much what he wants. There are some things we avoid as we know they can make him worse. For him it is anything in batter and hot dogs. But if he decides he really wants them, then I let him, as he knows they will affect him anyway, but it is his choice. To be honest he rarely asks for them now as he doesn't like the feeling they give him.
You will find for yourself what food makes your son worse, everyone is different as to what affects them. Go with your own instincts, what works for someone else may not work for your child and vise versa.

I also think it is so hard on our children going through all they do without cutting food from their list too. If we did it would make him stand out even more, and Josh has enough to cope with his crohns and doesn't need to be anymore different with avoiding certain foods as well, especially as he is almost a teenager, and that in itself will be enough to cope with

 

[Mehita]

I agree with the others. Don't cut out foods unless you have to. It might be worth a food diary for awhile to see if there are any trigger foods, but otherwise I thinks it's too hard on these kids to keep taking things away.

My son was dx with Celiac disease when he was 8 years old. Lots and lots of tears that year. While we tried to focus on what he COULD eat, it was very challenging to take all the gluten filled food away, especially at an age where they kind of understand, but at the same time don't fully understand or want to. Thank goodness there are more options these days.

We don't do nuts or seeds here under good conditions. Corn is rare and just because DS loves popcorn so much we do the kernel-less kind only for special occasions. I still peel skin off fruits and veggies. A habit leftover from his low residue times. Otherwise, he pretty much eats what he wants.

 

[Tesscorm]

We have few restrictions too... only restrictions we have is popcorn and corn and we avoid seeds and pieces of nuts as much as possible.

 

[Kev]

OK, I'll try to refrain from my usual long winded way of saying things. Some folks think you can cure Crohns with diet. I don't know about that. Some folks say certain foods will trigger Crohns symptoms... whether it feeds the bug, causing it to flare up, or simply causes the body to revolt... adding more Crohns like symptoms .. I don't know which is the more accurate depiction. But, I've had it happen to me, so I KNOW trigger foods do exist. They are different for everyone. But, I know that some foods put more strain on our digestive tracts. Healthy folks can take that abuse.. only pay for it when they're old. But, children, with damaged tracts... limiting foods that put a strain on GI tracts is something to instill in them early. Doesn't mean they have to live (eat) like monks, but I personally believe it is wise for young IBDer's to adopt a crohns sensible diet. That's all.

 

[archaeodani]

just agreeing with everything said above, and to give an example? we thought DD was lactose intolerant at the beginning, so w got her lactase pills and experimented with lactose free milk and other alternatives. Never got anywhere with that, really..

fast forward a few months, to mid-august, and after 6-10 weeks of bloody stools, she landed in the children's ward needing a blood transfusion /faint/

after her release (and actually IN the hospital), she had milk without the support of lactase. Hasn't had an upset stomache since.. So - for Kev and others, milk is a trigger; for me and mine? it isn't.

I believe Kev - food CAN and WILL trigger symptoms == but it's different for everyone. Try what is healthy, keep a food log and symptom log, and eliminate what is OBVIOUSLY hurting your little one.

 

[CrohnsKidMom]

Thanks for your thoughts and advice, everyone. I was doing low residue during my son's flare, but now that it looks like remission is here, the GI's instructions seemed so broad to me. Like most others, he has said no popcorn, nuts, and seeds, but other than that, just keep it healthy. And now there seems to be a ton of people giving me lots of food advice (some are in the medical field even, but none with IBD experience). So I've been feeling more and more confused. And I don't want to take away healthy foods if I don't have to. It's nice to have this forum to hear from people who have knowledge AND experience. Thank you!

 

[Amy2]

We decided to give the SCD a try. So, no sugar, chocolate, grains...
Son eats a lot of yogurt and fruit, pureed soups and smoothies. Nothing processed.

 

[AJC - Australia]

enjoy the food....that was the best advice i ever got. You meet people with crohns who hate food and have a huge list of foods they dont or 'cant' eat. The fact is, if the crohns is really bad and flaring you cant eat ANYTHING. He is in remission now, drink good water and eat the healthy foods he likes the most. Green leafy vegetables are excellent at helping the body heal and stay healthy. sugar is a killer. good luck.

 

[DustyKat]

Hey CKM,

Have to echo what others have said...

I didn't change anything with my two. We have tried for some time now to eat as fresh as possible. I think the one thing I did was to be extra vigilant with comments or symptoms that may relate back to something that was consumed and make a note of it. It didn't take the kids long to work out what agreed and didn't agree with them, much like those of us without IBD may have foods that we avoid for those same reasons.

My two have some dietary similarities, since surgery neither tolerates red meat at all well and actually that is about where the similarity ends! :lol: My son's diet still very much mimics that of a low residue diet even though he has been in remission for two and half years. It is what he likes and it sits well with him so I don't see the point in making drastic changes. My daughter on the other hand has made huge changes to her diet over the past three years or so. She has evolved to a vegan/raw vegan diet, reduced caffeine and very limited sugar. She researched her choices and for her they seem to work well, she is happy and healthy too and has been in remission for 7 years.

So two very different diets but they are diets they are happy with, they are both in remission, on Imuran and living life to the full.

Dusty. xxx

 

[Twiggy930]

I have struggled with what to feed my son at times too, and sometimes I still struggle with it. Unfortunately for my son the "trigger" foods, or foods that just didn't sit well at all, were never clear. Sometimes something would not sit well at all and give him immense pain and other times he would be fine with it. It has been very hard to tell. I have at times cut out all sorts of things i.e. lactose, gluten, did a FODMAP diet, did a low residue diet, etc. He seemed to have problems with all sorts of foods for a LONG time, even after the GI docs insisted he was in remission. Finally, more than a year of being in "remission" he can finally eat most things without pain. I don't know if the pain was caused by his gut just being overly sensitive from all the inflammation and trauma and now things have settled down or what but we did have a long time where he was supposedly in remission but still couldn't eat a bunch of things. A food diary was the most helpful in sorting out was was likely to cause problems but even with that it was far from clear.

My son's diet these days:

He still avoids large amount of lactose. He is not lactose intolerant but large amounts of lactose containing dairy products seem to give him troubles still.

I try to moderate his fibre intake. Too little has caused problems but so has too much. On the whole he eats a lower fibre diet than most of the "healthy" eating guidelines suggest (I think 7 servings of fruit and veg might kill him :ybatty: and so would loads of whole grains). He did successfully eat some corn on the cob this summer which was a surprise.

We were never told to avoid nuts, seeds and popcorn but he certainly didn't want these things when he was flaring. We still avoid popcorn. But he has the occasional thing with nuts and seed.

He never liked most gas producing foods so he still avoids them.

 

[AJC - Australia]

When flaring - the diet is entirely different to when not flaring.

When flaring I cannot eat anything without having problems and if i eat too much fibre i get an obstruction, usually because of a stricture.

When in remission, i can eat just about anything.

I am 100% healthy now and only take remicade, but I avoid dairy, gluten and sugar. I still take sugar in tea, i still eat some gluten and some dairy, but I avoid making them the staple of my diet.

People say bananas are bad - i love love love them and have never had a problem.
People say popcorn is bad - but i love love love it, and sometimes it is a comfort food that I believe is very high in fibre, expands in the gut and does wonders. Conversely if I ate popcorn while flaring and having a stricture, it would be the worst thing in the world to eat and probably cause an obstruction!
Nuts and seeds, if i chew them enough they are loaded with nutrition and they dont cause me problems.
Chilli and spicey food, I love it!

When the crohns is active, i could eat a rainbow and it would cause me problems...I could eat a lovely scented rose petal and it would come out the other end (after causing me pain) and look like the end of the universe.

I have two diets.....remission diet and flaring diet.

The flaring diet consists of soup, liquid foods, water and more liquid food.

The remission diet consists of all the yummy foods i can find!

I hope that helps....

 

[CrohnsKidMom]

Once again, thank you all for your helpful advice. It truly does help. Now here's a question: If in remission, does a trigger food CAUSE a flare-up, or just symptoms until it works it's way out of your system? Having discomfort for a couple days is one thing, going through what we went through last winter is totally another.

 

[AJC - Australia]

HI Crohnskidmom - personally i dont think a trigger food causes a flare. To me a flare is when your body has active crohns disease and that usually spirals in the wrong direction and you end up sick for weeks, months and sometimes years.

Not sure what you went through last winter, but crohns is seasonal. there are more flares at certain times of the year. Christmas most notably, probably due to emotional stress and weird foods, foreign locations, etc.

You could have had a flare last winter...not neccessarily caused by food. BUt probably made worse by some foods, if you were flaring.

I do think a 'trigger food' can cause a day of feeling like crap. . . even when in 'remission'....Working out what those 'trigger foods' are is very difficult. Some days you can eat something and no problem, other days it causes problems. You probably have a hunch already.

Definietely I look at diet as holding some hope to better health. People with crohns have sensitive guts, so why would one feed a sensitive gut foods that are hard to digest like; dairy, meat and gluten. I am 100% healthy and have no food intolerances, but I eat gluten free pasta - i drink rice and or almond milk with breakfast smoothies and you know what, it tastes nicer! In italy they have a huge gluten intolerance problem, the home of pasta! in fact in Italy if you have gluten intolerance, the governement gives you financial support and they have gluten free stuff everywhere! I do think avoiding gluten is a good thing to do, even if you are not intolerant..

sugar in fizzy drinks is just asking for disease......i used to drink gallons of the stuff, but havent touched it in years. yuk!

meat, i still eat meat most days, but i always have more vegetables on my plate than meat.

i hope that helps and good on you supermum for doing what you can to help your child.