My question is, do all signs point to IBD...could she have all of these things and scopes still not tell us something? Can calprotectin be elevated for other things? Does it always mean IBD? Is it too early to mentally prepare her that it could be a life long disease? If she is in the mild category, can she stay in that category? What is the likelihood of that? Is there anything we can do with diet? She is a food lover and told me it makes no difference in terms of what she eats. She tried gluten free for a bit and she hated it and lost weight and nothing changed for the above so that didn't work. Thanks for any advice!!!!
Hi and welcome! Yes, it could certainly be IBD, if your husband has it. Her Fecal Calprotectin is high (not terribly high though - it can be well over 1000) and it is a pretty sensitive test. It tells you if there is inflammation in the gut. An infection could cause it to go up but I'm guessing your doctor has already checked for infections if you're being sent for scopes. What I have learned over the years is that all kids present differently and they don't always have the "classic" Crohn's symptoms - bloody diarrhea. My daughter's symptoms were mainly abdominal pain and weight loss. She also had constipation occasionally but I was sure her scopes would be fine. But they showed ulcers in her colon and inflammation throughout her colon and at the end of her small intestine (in the terminal ileum). Her disease was considered mild when she was diagnosed. Her GI now calls it "mild to moderate" but she really has been lucky.
We chose to treat her aggressively to prevent the disease from becoming severe because she also has Juvenile Idiopathic Arthritis when she was 12 (autoimmune, inflammatory arthritis, which is associated with IBD) and we did not treat that aggressively enough early enough and it became severe. She has had to have many surgeries and even had two joints replaced.
We wanted to avoid making the same mistake when she was diagnosed with Crohn's at 16. So we treated her with Remicade and Methotrexate after being diagnosed and she was in remission in 8 months. So even if your daughter is diagnosed with IBD, there is a lot you can do to prevent it from progressing. Some kids stay in the mild category and respond to drugs beautifully and others do progress, but there are a lot of new medications that are very effective. I would take it one day at a time.
The main diet advice we were given was to avoid nuts, seeds and popcorn (as they can cause obstructions) and to use Enteral Nutrition (formula or shakes like Pediasure, Boost, or Peptamen Jr.) to gain weight and to help with malnutrition. There is also Exclusive Enteral Nutrition which is a 100% formula diet (which kids either drink or goes through a feeding tube) to induce remission - it's done for 6-8 weeks usually. It is very effective but hard for kids to do. Some doctors allow some food, so you can do a 10% food/90% formula diet instead to make it easier.
There are also many diets like the Crohn's Disease Exclusion Diet (CDED) and the Specific Carbohydrate Diet (SCD). They tend to be pretty strict - some kids can follow them, others can't. I'm going to tag @crohnsinct
since she knows a lot about diet.
I will also tag some other parents - @Pilgrim @my little penguin @pdx
I think the most important thing to remember is that your daughter will still be a kid even if she is diagnosed. She'll be able to go to school, play sports, hang out with her friends and eat junk food (occasionally!!) and do many of the normal things that kids do. There will be bumps in the road, but you will adjust to a new normal and so will she. Hang in there!