Is diet support needed?

[Gingermom]

Hi all,

I'm happy to say that my DS is in remission right now! Whoo hoo! Just in time for school to start. I'm feeling like a big part of this is all the changes we made to his diet and finding what works for him. We did see a nutritionist but the food she recommended was all wrong for him, not that she was wrong, just not well versed in IBD.

I'm wondering how much support you are all getting in the area of diet? I only ask because before DS was dx I started going to school to become a health coach with the intention of helping women with weight and hormone issues. But after going through this roller coaster with DS I think I want to put my focus on helping other kids and families with supporting dietary changes to help them feel better.

Not at all trying to sell anything here, just wondering if this is a service that is needed in our community or if you guys think you are getting all the help you need through a nutritionist.

Big hugs.
Michelle

 

[Farmwife]

Hi,
We ended up going to a local dietitian because the one that worked with the GI was more focused on her formula than Grace finding a livable diet.
Our local one is great and has helped a lot.

I think it's a good field to get into.
Of course I'm speaking more from Grace's EGID's then her IBD.

 

[Gingermom]

That's great news to find someone you like! I did graduate already and got certificated as a Health Coach. Now just want to find where I can help the most. I know when DS was dx I was thrown for a loop and totally had to change the way he ate. Even though he basically ate healthy, we had to remove gluten, dairy, poultry, vanilla..etc which was a big challenge and the nutritionist wanted him on the low residue diet full of bread, pasta, milk, but that of course would not work. It has been such trial and error but we seem to be at a happy place right now. And yes, his EGID makes it all the harder.

 

[Mehita]

At one point, DS was low fiber, low residue and is gluten free, yet needed to have 1800 calories. It was awful trying to figure it all out and we failed miserably. We did meet with a nutritionist and dietician, but didn't learn anything we didn't already know. That being said...

I think your idea is great. Especially for newly dx'd who are overwhelmed. No idea how to implement it, but just having a resource to go to would have been great. Maybe individually customized meal plans? Or it was easy to finds lists of food to avoid, but difficult to turn allowed foods into meals seven days a week.

Good luck!

 

[DustyKat]

So good to hear your lad is doing well! :dusty::dusty::dusty:

I think your change of direction sounds like a fab idea and sorely needed from my experience. TBH the dietitians I have come across have been useless when it comes to Crohn's. :eek2:

Dusty. xxx

 

[Amy2]

Congrats on remission!!!

We had a dr.'s apt. a few days ago and I'm not sure if the other person who stepped into the room was a dietition or a nutritionist, but her concern was iron and the fact that my son is a vegetarian. I brought up lentils and she said their iron was much less absorbable than from meat (which I knew). But when I asked her, "How much less absorbable is it? They have way more iron than most meat, but what percentage isn't absorbed?" She didn't have a clue and seemed to think it was a stupid question.

Seems more important that we know the absorbable iron content of a food, over merely knowing the iron content of a food...

 

[Jmrogers4]

That would be fabulous, we were quite put off by the dietician we saw after dx. She basically told Jack to eat more meat and eat his veggies last. Told him to divide his plate in half and on one half fill with protein source and eat that, then divide the other side in half again so you have quarters and in one quarter put your starch which he would eat second and in the other quarter his veggie which he was supposed to eat last (so he didn't fill up on it)

 

[Tesscorm]

Wow, I can't believe that was the advice you were given! :yfaint:

While the dietitien at our children's hospital really only focused on the EEN as well, she did give generic advice that I found useful at diagnosis (ie be conscious of the effect of high fibre, food ideas to help with 'symptoms') and explained why she COULDN'T be more specific re diet advice beyond EEN - diet doesn't cause or trigger crohns, everyone reacts differently to different foods, only firm advice was to avoid seeds, nuts, popcorn, etc. She didn't have tons of faith in specific diets such as SCD, Paleo, etc. to treat/control crohns but felt that most people do benefit when following ANY of these diets because you generally eat healthier (ie little to no junk/processed foods in any of these diets).

I know, at diagnosis, I wanted a more clearly defined list of what's good or bad but, from what I've learned since diagnosis, it would still be trial and error even from a knowledgeable dietitien.

However, it would have been nice if our dietitien had given me the info she did but followed up with the option of exploring specific diets such as SCD, etc. even if there is only anecdotal evidence of success (not saying there aren't real studies ... just not something I've researched at all!)