Specific Carbohydrate Diet...successful, but teenager burning out

Hi, I am new to this site. My daughter (14) was diagnosed with Crohn's in May of this year. She is an unusual case in that she had no noticeable symptoms other than a lack of growth. Finally blood work showed high inflammation, long story short, colonoscopy confirmed Crohn's. We immediately started the SCD and she has been following it religiously. With a lack of symptoms to begin with it was hard to know if it was working, but subsequent blood work has come back normal (inflammation way down, gastroenterologist said she is good to go for six months). She hasn't grown much yet, but the endocrinologist isn't concerned.

The problem now is that she is SO sick of all the SCD food. She was a picky eater to begin with so it was never easy, but lately much worse. Every week there seems to be a new food (eggs, fish, almond flour) she just can't stand anymore. And she is incredibly stubborn, so no means no. She never deviates from the diet, but her mood is getting worse and I worry that she's not getting enough calories.

I know there are other diets (the Maker's diet comes to mind, as that allows certain grains). I'm curious if anyone has had experience with shifting from one diet to another, or combining them. Again, the difficult (but wonderful) part is that she does not have symptoms so we never know if a certain food is well-tolerated or not.

Would love to hear if anyone has been in a similar situation and/or has any advice. Thanks!

Sorry your daughter has Crohn's. What exactly did the colonoscopy show? Where is the disease located and how severe was it?

When you say blood work shows inflammation is way down, are you referring to CRP?

Unfortunately as you have learned, symptoms don't always correlate with disease activity. But what's worse, neither do blood markers. Sometimes they do; sometimes they don't. For some people they track pretty well, but for others they don't track well at all.

My point is that if she is going to attempt to treat her Crohn's with diet, I would advise she has regular scopes on top of just doing bloodwork.

Thanks for your replies. Beave, she has Crohn's of the small and large intestine. The colonoscopy showed ulcers in multiple locations. The Dr. described her disease as moderate. Yes, CRP was one of the blood tests that was very elevated but then went down significantly within a month of being on the diet. Her Dr. didn't want to do any more scopes in the near future, but that would be very helpful. Very traumatic for her though, she didn't handle the prep and procedure well.

NiceCupofTea, the reason we have been being so careful is that we are concerned about her development. She is almost 15 and has no physical signs of puberty. She may just be a late bloomer but the Crohn's definitely affected her growth (she was anemic, Vit. D deficient, didn't grow for two years, etc). We just want to get her body back on track for normal development. Then we'd feel better about a "normal" diet. The SCD does a really good job of making you (at least us) very paranoid about any deviation!

No worries. I wish her doctor would speak to us more directly! I rechecked her scope photos and there is an area circled in the terminal ileum...I don't see much but I believe it was an ulcer or at least some inflammation. Her GI did mention that there could be disease farther up but didn't recommend doing a scan at this point, only if she didn't improve.

The reason we went with the diet is because he wanted to put her on a fairly high dose of prednisone for two months. Knowing the side effects, and knowing our daughter is extremely sensitive to side effects, we opted for the diet (her choice also).

We feel like we are on our own here because although he supports the diet, he is hands-off in that regard since it's not background. We are just going by what we've read in the BVC book (also online research of course) and the book says two years on the diet! Sounds very extreme, but again we are worried that if we stop to soon the Crohn's might come back in force.

WAMom, is the GI a pediatric GI? An IBD specialist? Both? Or just a run-of-the-mill GI?

Did the GI suggest any medication options besides prednisone?

Do you have a doctor *closely* tracking your daughter's growth? A pediatric GI should do this. Her primary care doctor could do it too.

Has your daughter seen an endocrinologist?

I don’t comment on posts often, but this one is still bothering me. When I was first diagnosed (at 30) and shortly thereafter hospitalized, I was grasping at straws to understand and get this disease under control. I went to a support group at a local hospital. I remember a mother and teen daughter in the group. The mother was extremely anxious about the diagnosis and it seemed that putting her daughter on a highly restrictive and diet and constantly monitoring her teen’s every move seemed to sooth her anxiety but this behavior was making her already sick teen miserable. That was more than 30 years ago and that image is still in my mind. I felt sorry for the daughter as she did not have any control over what she ate and I felt like being micro-managed made dealing with the disease so much harder for the young teen. She had no sense of control.

Hi WAMom,

Happy to know SCD diet is helping your Daughter.

Sharing few tips from our SCD journey:

DD strictly followed it for 2 yrs and got better.

We ordered snacks from Wellbee's (back then- it was called digestive wellness) and some from SCD bakery.
Two blogs DD followed to cook foods - All against grain and Urban poser.

I used to make batches of SCD legal turkey sausages. (got the recipe from scd life style)I added scd legal spices, ginger,garlic to the ground turkey to make it tastier.

I don't know about your daughter's tolerance level....Mine was able to tolerate all scd legal veggies and spices.I cooked and pureed butternut squash and seasoned with garlic,shallots and mustard seeds. Sometimes I added scd legal navy beans and ground beef to it and made chilli. This was her lunch and dinner for 2 straight years. Along with it she had either baked salmon or chicken or beef and some stir fry veggies.

It is tough and painful to be on a restrictive diet esp in high school. Since she doesn't have symptoms ,try different recipes with different legal vegetables and combinations.

Wishes and prayers....

Thanks for all the advice and food/book suggestions. Noulls, just so you (and others) know - she made the choice herself to do the SCD when we presented her options. She did not want to take Prednisone. We always tell her that she is free to go off the diet any time she chooses. She happens to be a little OCD and she likes structure so having a diet plan actually suits her. Again, we aren't so much worried about symptoms popping up as we are delaying her growth even more. It's a silent problem so there is no way of knowing which foods affect her. We are seriously considering it at this point though.

Yes she has a pediatric GI and an endocrinologist. So far they have just measured her height and weight every couple months. She's on the low end of normal for both. The endocrinologist seems to think growth was delayed due to malabsorbtion and will resume normally, but it could be a while.

Concur with beave regarding prednisone. My doctors use it as a we-need-to-keep-you-from-getting-any-worse-while-we-implement-another-solution drug. Prednisone is a pretty heavy-hitting medication, and has a lot of unpleasant side-effects. Especially when added to teenage angst. Trust me, been there. Wasn't fun for anyone involved.

Also agree with BRelaxed regarding treatment decisions. While it's good that you're keeping her involved in the process, it's also important that you exert influence on it as well. I hope you're doing that. I'm sure it's tempting to think "but she's so smart! she can handle it" and things like that, but she's also still a kid. I was 16 when I was diagnosed, and I was pretty intimidated by the prospect of managing my own care. I continued bringing my parents to my appointments until I was around 20, if only because it was comforting having them there and hearing their opinions on treatment options. Plus, they thought of questions I didn't. Ultimately, Crohn's is unique to every individual. Your daughter is, eventually, going to learn what works and what doesn't for her. Until then, she's going to need some help figuring out the best things to try. And, really, SCD isn't a terrible first choice. It's just not suited to your first priority right now.

Since she's totally asymptomatic, I would again recommend stopping the SCD and choose a diet tailored for growth, if she enjoys the structure. I'm sure her GI can recommend a maintenance med that should control the inflammation.

Also, if she gets stubborn, you might consider having her take a look here and other places online.

It's nice to hear that you've put your daughter on SCD and she's following it strictly. Here's an article about the effects of picky eating on mental health - courtesy reuters.

http://www.reuters.com/article/2015/08/04/us-health-kids-picky-eaters-idUSKCN0Q825Y20150804

I myself was very stubborn and had been a very picky eater when I was a child. Based on my research, symptoms and diseases I personally suffered from, I believe picky eating has a wider range of effects on health than the one mentioned in the article. If parents could be more creative with cooking different recipes and presenting the food to their children in a luring way, I guess this problem can be solved. It's also important to teach their children about the benefits of food; minerals, vitamins, anti-oxidants, enzymes, beneficial compounds etc. that they contain, so that children try different food. You could subscribe to Wellness Mama on Facebook or read her articles on her homepage.

I had been on SCD for one year with complete compliance. I could recover from GERD, Gastritis, Hemorrhoids, Anemia, migraine, depression, acne, insomnia, eczema, candida, mood alterations, concentration problems, memory loss, confusion, food intolerance etc. Because of the visit to my home country, I had to end SCD after being on it for one year. I had some symptoms after reverting to the normal food. But, they subsided after a month. I've since been eating healthy food, preferably organic whole grain. I don't have food intolerance anymore and don't avoid any food. I eat all kinds of food - raw vegetables, fruits, milk and milk products, alcohol, coffee, tea etc. I obviously avoid junk food with a lot of chemicals that has devastating effect on gut microbiome and overall health, GMOs that produce pesticides on their own and are made with E. Coli strain and so on. For your information - In my home country, farmers would drink pesticide to commit suicide after failed crop. To make it short - I eat REAL food and avoid FAKE food.

I had been skinny all my life. I could not gain weight beyond 50 Kgs. I was 44 Kgs when I was diagnosed with Crohn's disease. I now weight 54 Kgs. it took almost two years to gain 4 Kgs. The gut microbiome changes once the diet is changed and it takes time for good bacteria to replenish while the bad bacteria die, releasing a lot of toxins. Healing takes a long time and one needs to have patience. I wish all the best to your daughter.

You could subscribe to SCD yahoo group. There are very nice people that offer help when needed. I was a regular member on SCD yahoo. I don't visit the group and more, as my area of focus has changed.

https://groups.yahoo.com/neo/groups/BTVC-SCD/info