Impact of diet on IBD for 5yo

[PB72]

Hi, total newb to both IBD and this forum having had 5yo dd diagnosed a couple of months back with Crohn's and still very much in the learning phase!

I see from this forum and lots of other sources that diet plays a large part in controlling IBDs, and after having read John Hunter's book IBD which goes a step further by suggesting that you can use a controlled diet to actually (potentially) starve and kill the illness, I am very surprised to hear our consultant completely reject this.

She is reportedly a leading (UK) expert on Crohn's, specialising in children's cases, and 100% refutes that diet has any part to play and that my dd should be able to eat pretty much whatever she wants as her flare ups will be dictated by (unknown) other causes.

Now I appreciate that medicine / illness is not an exact science, and that everyone responds slightly differently to their environment, but this difference of opinion is very confusing to us, and we would be very keen to hear other opinions on the matter. I want to believe in John Hunter's research and learn how to control the disease, but the experts that we have seen advise against this.

Can anyone assist with this confusion?!

Thanks in advance.

 

[DustyKat]

Hi PB72 and :welcome:

Diet and it's role in IBD surely can be a very polarising topic! Many, maybe even most??, doctors do not believe that diet plays any role in the course that IBD takes but my own personal opinion differs from that and unfortunately that is how you will find most things with this disease, very personal and individual experiences that lead people to many and varied opinions.

Firstly, Enteral Nutritional is a well recognised and researched first line treatment for Crohn's that is as effective as steroids at inducing remission. EN is a diet.

I have learned to never to say never with this disease and my opinions about many aspects are evolving and changing all the time. I personally do not see how something that you put in your mouth, that then comes into direct contact with your intestine can have absolutely no influence whatsoever, even those of us without IBD often have foods that don't 'agree' with us. While I don't believe that diet causes Crohn's I do believe that it can help maintain remission and alleviate symptoms when flaring. Used in conjunction with other mainstream treatments, if that is what is required, and with close monitoring I believe it does have the potential to improve ones overall health.

You will find many people here for which diet has played a large and successful role but the main things to remember is what works for one doesn't necessarily work for another and to always be prepared to change tack if need be. Don't become so set on one path that you aren't prepared to detour when things aren't working.

Also bear in mind that disease in children very often is of a more severe nature so close monitoring is essential.

There will be others along that have far more experience than me with kids and diet. Good luck to your DD and welcome aboard!

Dusty. :heart:

 

[Dexky]

I think that individual nature of IBD may be why so many GI's are reluctant to make any dietary recommendations. I suspect that the best they would be able to tell you is over time you will discover foods that are "safe" for her and others that are not. My son cannot eat raw apple because his body will not process it. For many on here, corn, nuts, milk products, many veggies are problematic. My son really has no problem with those. It's just so varied, there seems to be no solid evidence that a GI could put his finger on!

 

[izzi'smom]

I found that diet seemed to help the first time we modified it and didn't do a bit of good the second time she flared. Our doc was willing to listen but skeptical, while he agreed that some people have trigger foods.
So while diet works for some,I am willing to bet in your docs experience it doesn't work for most.
My dd was four at dx...but her crohns was severe enough that I had to progress from diet and supplements to pretty hefty drugs.
It's a tough road...glad that u found the forum...it helped me immensely early on...((hugs)))

 

[Dutch941]

Welcome PB72,
Being semi new to this world as well we certainly aren't experts...but from all that I read I believe there is a lot more to the diet/disease correlation than the medical community lets on. I think researching your child's needs is of huge importance because at this point you are where you are regardless of the causes but diet is certainly going to be a factor in our child's comfort/discomfort.
Our GI's very conservative stance was that diet is critical during a flare. He limited us during the flare and then opened us up to nearly everything after the flare.....still warning us to avoid popcorn, tough meat, and extremely spicy foods. He also advised we may discover over time that trigger foods exist and to avoid those. I believe this is a minimalist approach and that a helpful diet should be considered more strongly.....but let's face it..it's hard to make that happen with a child.
Keep researching your diet options and my best advice is to listen to your physician but always keep in mind that he's basing his opinions on the average patient and you know your child better than anybody. Go with your gut on the diet needs of your child ....best of luck and you are definitely in the right place for information..
Don

 

[KWalker]

Hello and welcome to the forum! Diet can work absolute wonders for crohns but to say it could work for you could be lying and inaccurate. You said you're new to crohns so over time you'll learn to realize that just because person A had success with something, person B could have a totally different experience with that same treatment option.

Unfortunately because everybody with crohns is so different this happens with medicine, diet, etc. and you can see this by going in any one of the sub-forums where you'll see two people with the exact same disease giving two complete opposite opinions and experiences, about the exact same medicine.

I am currently treating ( I guess you could say) my crohns with diet alone, but I've been on most of the medicine available and never really got anywhere with them so for me diet was like a "might as well try" decision to see if anything would happen. Luckily I've noticed personal changes because of it, but there are also many others who do not have success.

Like others have said, your doctor will more than likely turn down diet as any importance with crohns but it doesn't require a doctor to alter a diet to eat healthy. Unfortunately, nobody else knows your son's diet like you guys do so it is important to discuss severity with your doctor, what he/she thinks is best, and what the best treatment option for your son is.

Regardless of the treatment plan I hope you guys can jump right into proper treatment as soon as possible to get on the road to remission so you guys don't have to go through some of the battles other members have had.

 

[PB72]

Wow, what a response, thanks so much to all for your comments, that is very consistent and reassuring feedback - consistent in the sense that everyone seems to agree that no-one agrees on this, and that in itself is reassuring.

And your prize for being so helpful? You get to hear my 2nd newbie question. :luigi:

So after the colonoscopy and Crohn's dx, dd was prescribed an anti-inflam to deal with ulcers and things seem to have calmed down. (We also took her off dairy, wheat, spicy foods etc. as an additional precaution.) She seems OK right now except the meds seem to give her difficulties sleeping so last week she was prescribed a sedative to use as required. It feels like we are going down a dangerous road (don't get me wrong, I know we are at the bottom end of this disease's scale right now and I don't wanna disrespect anyone whose illness is acute by worrying overly about minor complaints) but taking one med to reduce the side effect of another is a path that feels sub-optimal, and with the 'expert' telling us to forget diet and take the meds we're nervous about ditching them in order to try a dietary approach alone.

So my second (admittedly long-winded) newbie question is this: would the warning signs of a 'relapse' be obvious, and do you have an opinion on whether allowing (at least the start of) a relapse in the experimental phase could cause irreversible damage? Right now we are basically monitoring stools for looseness and keeping a food diary to see if any correlations can be found. Along with taking the meds of course...

 

[Dutch941]

PB, I don't have a great answer to your second question, but fear not! Someone will mosey on in with a good one, however, I can tell you not to worry about feeling your issues are any less important than anyone else's. It is true, many parents here are suffering many levels of issues and frustrations, but it is my experience that we all share an immense hatred of seeing our kids be uncomfortable. And I think everyone feels each and every kid here is one of "our" kids. So ask away and it won't be long before you too are giving our experience to a new parent here.
When it comes to my child, I know he is very fortunate to have UC (so far) and not Crohns ....but when he is ill it feels horrible and I want all the help I can get to remedy his issues....this sites support is so helpful and everyone is very helpful.
I too am having a relapse scare right now after a year or so of seemedly healthy child.
So, based on what you asked I can only advise to prioritize. No sense worry about relapse when issues are still at hand. Handle the issues that are present in the best way that you can via the GI's expertise, your own research, and common sense. There are no wrong decisions if you weigh all of your options. Once you get things settled down, like we did with prednisone initially, then you can weigh all of your maintenance concerns. At that point you will most definitely worry about relapse and how long before the bubble bursts so to speak. In my opinion, you will utilize labwork and SYmptoms to monitor potential returning issues.

 

[Jmrogers4]

Welcome PB72
My question to you is what anti-inflam was she put on? So many of them have side effects.
Have you looked into EEN? There have been many papers written about the effectiveness as a first line defense to get inflammation under control. I think most kids in the UK use Modulen. It is a total liquid/formula diet for 6-8 weeks. Providing all nutritional/caloric needs. It is easier to digest and absorb.
I will throw my own opinion in on diet and I thank you have gotten some great advice so far on that. My hubby and my son both have Crohn's and we have tried numerous diets. First off we found they were very hard to stick to. Particularly if you have a picky eater or they did not provide enough calories.
Crohn's kids seem to need more calories to maintain and develop then their peers. That being said I do believe diet plays a huge part of the way you feel. We try and stick to a fairly clean diet and as close to natural as possible. It has certainly helped the way Jack has felt but then until recently he had grown and gained very little for the last 3 years.
We currently have him on Supplemental EN and he drinks 8 cans of formula a day and has finally gained some weight (he has cheeks again)
The biggest issue is this can be and a lot of time in children is a very silent disease and on going inflammation can be wrecking havoc on the inside with very few obvious signs on the outside, so symptom diaries and food diaries can be a god-send in tracking trends.
So if you do decide to try diet first make sure she is monitored and blood tests and inflammatory marker testing is done often. Although as you have probably already realized this disease especially in children doesn't seem to conform to a standard pattern and Jack's blood test and inflammatory marker tests have always come back looking good but there were things happening on the inside that were not reflected in these tests and there are many others on her that can tell you the same thing.
I'm not a doctor but I believe that many doctors try to hit the disease hard and fast in someone as young as your daughter in order to lessen any damage and ungoing inflammation giving them the best chance to grow and develop along with their peers.
Sorry for the long post, I'm glad you found us but awfully sorry you had to.

 

[Dutch941]

Jacqui,
Not meaning to hijack the thread(says the guy hijacking th thread)
But how has the LDN been working out?

 

[Jmrogers4]

Colonoscopy and endoscopy a month ago showed healthy tissue, blood work done at the same time was the best it has ever been Sed rate was 7! and CRP was .5. Calprotectin was normal. That being said we are soon to have a MRE to look for thickening of bowel wall or stricturing in small intestine due to lack of growth/weight gain for past 3 years. However he has now been on supplemental EN for a month and has gained 12 lbs (I'm sure the height will follow). My best mommy guess is we will not see anything on MRE and he was just not getting/absorbing enough calories/nutrients but I'm willing to have it done for all our peace of mind. (I think his GI is having a hard time believing the LDN is working even though he suggested it). And with Scopes just done and supplemental EN we have met our deductible for the year so may as well.

 

[Dutch941]

Awesome...we want to try LDN before getting into remicade....

 

[Henrietta78]

Diet...We try to focus on bowel soothing food even in non-flare times; white breads, lean proteins, well-cooked veggies, fruit with no skin/seeds etc., minimally processed foods and limit anything fried. And no dairy b/c it seems to cause him bloating and loose stools.

Concerning flares...Since initial diagnosis two years ago, I think we have only encountered one flare and it was due to dairy being introduced into his diet that we overlooked. Physical symptoms (loose stool, more BM's per day, gas/bloating) were obvious, but only lab that reflected was Fecal Calprotectin.

Despite the fact that he "appears" to be clinically in remission (normal bm's, steady growth), and his calprotectin is trending downward, it is still higher than normal and his iron is always on the low side of normal, so dr. wants to repeat scopes to see if the inflammation on the inside continues. It's also a little concerning that his iron levels are always hovering on the low side.

 

[Farmwife]

Hi and welcome.
My Grace is 4. It's such a hard age to figure things out. You've been given some great advice. I also put my vote in for EEN. My Grace is on this and even though she hasn't been put into remission yet the EEN has done her a world of good. Please PM me if you have any questions.:hug:

 

[Dexky]

She seems OK right now except the meds seem to give her difficulties sleeping so last week she was prescribed a sedative to use as required.

So my second (admittedly long-winded) newbie question is this: would the warning signs of a 'relapse' be obvious, and do you have an opinion on whether allowing (at least the start of) a relapse in the experimental phase could cause irreversible damage? Right now we are basically monitoring stools for looseness and keeping a food diary to see if any correlations can be found. Along with taking the meds of course...

Is the anti-inflam the only med she's on? What time or times does she take it?

In my son's case, we watched him go from a healthy ten yr. old boy to 10-15 times a day bloody d with dark circles below his eyes, pale, ghostly thin….no way we were going to let it happen again while there was something we could do to stop it. If her case is mild, perhaps I'd be willing to risk another flare but you'd have to make that call. I have an acquaintance with UC who was dxed at 4 and, after her initial flare, lived med free until age 30 w/o a symptom then she flared quite badly. She's an exception in my experience though. Good luck!!

 

[Dutch941]

Henrietta,
How low is the iron count? How but the ferritin levels? Hemoglobin?
We too have very slow movement in iron levels and ferritin...but GI says they return to normal VERY slowly....so are his numbers moving in a positive direction?
ARe you supplementing?

 

[Henrietta78]

Dutch-
Don't know about ferritin...

Hemoglobin moves around a bit. Hemoglobin iron was 11.3 at last visit, at previous visit was 11.6, time before that, 11.4. He was put on therapeutic levels of Ferrous Sulfate right after diagnosis but GI doc took him off once he got above that 11.4 cutoff. Now at 11.3, she wants him back on ferrous sulfate supplement. Other than that have been trying to get him lots of iron in his food. GI doc said if scopes come back wihtout showing inflammation, his next stop is a hemotologist for unexplained anemia.

 

[Catherine]

Ok, you need know the levels for ferritin, b12 amd folate. The most common reason for anemia is low iron but is not the only cause.

 

[Henrietta78]

K, thanks! I will see if I can get that info. Would you contact the lab, or the GI nurse for that info?

Do you all have the labs send the results to you directly as well as to the doctor?

 

[Dutch941]

I would say contact the GI nurse..and be prepared to stand your ground because it seems a lot of docs don't seem very concerned about these things. My lab won't send results to me so my GI always keeps a copy waiting for me to pick up.
In a nut shell iron and ferritin are a bit different..google them both, but basically ferritin is your body's level of stored iron(don't quote me on this) remember, this level moves very slowly as it improves..so patience and attention are required.
In our case...I believe our hemoglobin moved up quickly as his body recovered but the ferritin moving very slowly. And my GI seems more interested in ferritin than iron.

 

[Jmrogers4]

Nurse has always sent a copy to me or I asked for them when I was in the office. Now they just set up a new system where I can view all his lab results online, it even allows me the option of comparing past results.

 

[Henrietta78]

That's what I want! I will ask if they offer this service.