• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

(I'm new- hello) SCD diet and appetite loss?

Hi, glad I found this forum. I have a 14 year old daughter who was diagnosed with Crohn's in May. Her only symptom was lack of growth (malnutrition and anemia as well) so it took a while to diagnose. Since she really wasn't suffering we decided to try the Specific Carbohydrate Diet instead of recommended Prednisone, etc. She has complied 100% and is doing great medically - blood work is normal and shows no inflammation.GI doc is happy, endocrinologist isn't too concerned yet because she has gained some weight/height. Still no puberty though.

The problem is that she has recently started losing her appetite for many of the SCD foods she can have. And she was a very picky eater to begin with, so her diet is very limited. She says that she literally feels sick when she tries to eat certain foods that she used to like (eggs, tuna, almond flour, the list goes on). Lately she's not getting enough calories (maybe 1500/day). We have considered deviating slightly from the diet, maybe including items from the IBD-AID diet or even Paleo. We would rather not risk it, however, until she has gone through puberty. Since she had nosymptoms in the past, we wouldn't know right away if the food affected her.

GI supports SCD but doesn't know enough about it to advise. Trying to get her to just eat more of the foods she DOES like, but she is one stubborn girl. Has anyone had an experience similar to this? Thanks for any info/advice!
 

my little penguin

Moderator
Staff member
Does she supplement with formula ??
Tagging optimistic only one who had succes without meds that I know of
But I think her son is on 50 % formula
And 50% SCD
 

Maya142

Moderator
Staff member
Have you considered adding shakes - Ensure and Boost? I'm not sure whether those are allowed on the SCD but lots of kids drink them for supplemental nutrition.

If she cannot tolerate boost/ensure - there are semi-elemental shakes like Peptamen Jr and Pediasure Peptide. They don't really taste great - we had to bribe my daughter to drink them but eventually she got used to the taste.

Tagging crohnsinct - she knows a lot about diet.
 
Hi there. I'm sorry your daughter has IBD. Things will get better, we promise. The first months are horrible and man is it always on the mind!

My son couldn't get into remission with steroids so we tried EEN which is exclusive formula, all orally. He tried at least 6 brands from stores and prescriptions before he found a few he liked well enough. When this eliminated symptoms he added in SCD and now drinks between 30/50% of calories in formulas. Over a year later he is in clinical and mucosal remission (knock on wood) so we aren't changing anything for now.

From what I know about the diet (consults with drs at 3 children's hospitals and 2 nutritionists involved with SCD), a child on SCD needs to be watched closely not only for any disease progress (you are doing this) but also nutrition. My son is advised to drink at least 3 to get the minimum vitamins and minerals needed and for extra calories. This also provides fat that is hard to get on SCD. Some days I've seen him drink 7 (granted he is 6'2 and plays a lot of sports) but formula has moved from battles / mandatory /bribing / threatening to an easy and regular part of his life. Bottles are all over his room, backpacks, teammates drink to try to beef up!

He too was very picky and I think he tires of the legal foods sometimes. I think this might be code for "I want pizza and fast food like other teenagers?" Amazon has several SCD cookbooks and there are many recipes on scdlifestyle.com, but I've wasted a ton of time and money trying to force variety. I'm letting that go and I make many of the same things over and over. There are a few foods he has stopped eating because he doesn't feel great when he eats them. We just move on. This week is about salmon, carrots, strawberries and peanuts.

I would bring up the lack of appetite to dr. My son was diagnosed after what we thought was a sudden all hell breaking loose week...looking back there were many signs. One was limited appetite and early saturation. One gi was pretty confused why this hadn't really concerned us. Maybe bc we had never heard of Crohn's???

All that said, get her on some formulas. Boost High protein chocolate is the current favorite in our house. I know formullas are not SCD legal. I've checked them all, talked to manufacturers and SCD gurus. I am militant about following diet in every other way. One dr finally said "well he is doing 2 things that research suggests can be positive for some kids so let it go". I did.
 
You'll find few doctors who advice their patients to treat their crohn's disease with SCD. We need all the calories and nutrients we can get and restricting yourself by removing all complex carbs from the diet, can turn into malnutrition rather quickly. I'd be very wary of substituting medication a doctor recommends with unproven diets, those stories rarely have a happy ending.
 

crohnsinct

Well-known member
We are using IBD-AID (based on SCD but allows oatmeal and soy) and formula. It is true no formula is SCD legal BUT when used as treatment for IBD all the docs will approve.

There is a big difference between not hungry or getting full quickly and disinterest in food. I would want to really investigate what is going on because it could be that the IBD is kicking up a bit.
 
There is a big difference between not hungry or getting full quickly and disinterest in food. I would want to really investigate what is going on because it could be that the IBD is kicking up a bit.
I have to second this speaking from experience. Lack of appetite for us correlates to disease activity. In our case other than initial diagnosis only clue has been lack of diagnosis and little growth and no puberty from about 10 till 14 1/2. We thought he was doing well but ended up only growing a few inches over several years. All his labs were in the normal range. We discovered inflammation in the small intestine during an MRE that likely was the cause of his growth/development delays.

I agree with the supplemental shakes as he did gain weight and grow some while he was on them. For us the SCD diet didn't work because we just could not get enough calories into him based on what he would eat which then in turn affected his growth and development he was in the 1% percentile for BMI so we really didn't have a choice anymore, that's when the supplemental EN was prescribed.

No that we have found a treatment that works for him, puberty hit hard and fast and he went through about 3 years of puberty in a year. He went from looking like a short 10 year old boy to a tall normal 16 year old.
 
Thanks so much for all the advice. We will seriously consider supplementing with formula. I know she needs more and I'm glad to hear from those that have had success, especially since it is so "illegal"! Her doctor hasn't been much help, other than to say that deviating from the SCD could cause a relapse! We are contacting dieticians but not sure that they would support the SCD.

When talking about about EEN or formula, is that always something like Ensure, or something the GI sometimes prescribes?

We will have her checked out soon if the lack of appetite continues. She does have some anxiety, especially about getting sick, and is very stubborn about avoiding things. But it is good to know that this might be a symptom so will keep that in mind.
 
This has been on my mind. I'm hope it wasn't lost in my long post that lack of appetite and early satiation, regardless of how you are treating or what last test result was, is a big red flag. In hindsight, had we investigated that when our seemingly normal son first started to eat less, who know what we could have avoided. I know it is stressful dealing with a teen. I love to put my head in sand. But I have been instructed that if his appetite decreases AT ALL to get to dr immediately. His clean scopes and biopsies a few months ago are in the past, not now. This disease can change course quickly. Best to both of you.
 
Thank you Optimistic. I will mention this to her GI today. This is all so frustrating and complicated sometimes!
 

my little penguin

Moderator
Staff member
I tend to agree
Ds has a big appetite but lots of nausea and early satiety so Gi is doing testing looking at other things but if he lost his appetite then he would be scoping for crohns issues .
 

CarolinAlaska

Holding It Together
Hi, glad I found this forum. I have a 14 year old daughter who was diagnosed with Crohn's in May. Her only symptom was lack of growth (malnutrition and anemia as well) so it took a while to diagnose. Since she really wasn't suffering we decided to try the Specific Carbohydrate Diet instead of recommended Prednisone, etc. She has complied 100% and is doing great medically - blood work is normal and shows no inflammation.GI doc is happy, endocrinologist isn't too concerned yet because she has gained some weight/height. Still no puberty though.

The problem is that she has recently started losing her appetite for many of the SCD foods she can have. And she was a very picky eater to begin with, so her diet is very limited. She says that she literally feels sick when she tries to eat certain foods that she used to like (eggs, tuna, almond flour, the list goes on). Lately she's not getting enough calories (maybe 1500/day). We have considered deviating slightly from the diet, maybe including items from the IBD-AID diet or even Paleo. We would rather not risk it, however, until she has gone through puberty. Since she had nosymptoms in the past, we wouldn't know right away if the food affected her.

GI supports SCD but doesn't know enough about it to advise. Trying to get her to just eat more of the foods she DOES like, but she is one stubborn girl. Has anyone had an experience similar to this? Thanks for any info/advice!
Has she reached any puberty at all? It takes 2+ years to start menstruating after breast development begins. It held true for my underweight, malnourished, delayed puberty daughter. She still can't gain weight with a healthy diet alone, and so I had to let her supplement with Ensure. This has helped, but she still has GI complaints... She finally started this final step in puberty at age 16+, even though she was still underweight.
 
No physical signs of puberty, although blood work showed hormone levels for early puberty. Yes I have heard that too and I think she may be on the same path. We saw her endocrinologist last month and she was pleased with some height/weight gain and is still hopeful that she will start developing. However her current of appetite loss has us worried she will backslide so we are checking with Drs. again.
 

Catherine

Moderator
We had a dx of IBS first. We tried the Fodmaps diet with 16 year girl. Symptoms at that time anemia, period of severe pain, anemia. No bowel symptoms at all.

Start diet November no improvement. Didn't like the diet. December lost 5 kg. January weightloss lost 7kg. Dx with Crohn's.

Can you get faecal calprotectin run?
 
Top