Morana, a mother from Switzerland, shares her family's story
Our son Noah was diagnosed with Crohn’s in the summer of 2014 - he has just turned ten. In the preceding months he was suffering from diarrhea and low-grade fever. He had lost weight and the color had drained from his cheeks.
Even though it was summer, he would not go for a swim in the lake (we live on the banks of Zurich lake) saying it was too cold, while all his friends were cajoling him to join them. We knew something was wrong, but the diagnosis still came as a complete shock and we were numb with sadness and anxiety. I remember just how beautiful that summer day was, but for us it felt as if the sun had stopped shining.
Luckily we have a very nice GI who has explained different treatment options and we were glad that he mentioned a possibility of the enteral diet that could be tried before “the heavy artillery”. However, as we live in Switzerland, nobody has ever mentioned or even heard of the SCD diet here.
As the first line of medication our GI suggested Pentasa, twice daily a sachet with 1g granules. Pentasa did not seem to do much, if anything at all, Noah was worse than ever, maybe the colonoscopy had aggravated his system even more or the psychological effect of knowing he was no longer “untouchable” had cast its spell. The following weeks are a blur of trying to get the inflammation under control and searching the internet for more information. Luckily, by searching the internet we’ve come upon the SCD diet. How comforting it was to read stories of its healing power! Finally a trace of hope (as I hope our story could be to somebody else who might stumble upon it).
We have contacted Dr. Suskind of the Seattle’s Children Hospital, who was more than helpful, encouraging and kind enough to connect us with Tali Guday and her brigade of parents on facebook. Here we have found support, a wealth of knowledge and experience, empathy and above all, a sense of belonging. So now two weeks after diagnosis we were ready to go. How about Noah? He was not. He was grieving the loss of his favorite foods, and if anybody is wondering what that could be - bingo, you’ve got it- pizza, pasta and co. So we went on a “farewell meal” to Burger King, whereupon he vomited violently.
Something needed to happen real soon so immediately next day was his first day on intro diet. It was dreadful. He hated the bone broth and the pureed meat, he had hardly touched anything. But he wasn’t vomiting and the diarrhea had stopped. The second day pretty much the same, except he ate some homemade minced meat patties and he was even more miserable. By the third day he was getting very hungry, the soup and the patties were not enough, we have introduced eggs and he would devour 5-6 at once. Next day he wanted to go for a swim, he did not stay in the water too long, but we knew he had made a turn for the better. His health (and mood 🙂 ) has steadily improved since then. Soon afterwards he was eating cooked carrots and minced meat in tomato sauce (diluted with a lot of broth and quite greasy I have to add - he never seemed to have a problem with eating too much fat), fatty fish and homemade marshmallows (he needed a treat and we were reluctant to offer fruit as he seemed to react to fructose more than to anything else).
We tried to combine SCD with low FODMAP diet at the beginning, so we only used special honey which has about 1:1 glucose to fructose ratio (http://www.siboinfo.com/uploads/5/4/8/4/5484269/sibo_specific_diet_food_guide_sept_2014.pdf). Slowly after that the first fruit was introduced- cooked and pureed blueberries and strawberries and cooked, pureed and deseeded raspberries- he either ate it as such or as fruit leather- and grape juice jello. That was pretty much all he could take the first couple of weeks (we also tried very ripe bananas but he reacted to them with more tummy ache which by now was much milder- only after 2-3 months could he eat bananas). Two weeks into SCD he got what I think were his “die-off” symptoms: extreme bloating and very yellow stool for a couple of days. After that point we have slowly started to introduce homemade yogurt and Noah had no problem with it, at the beginning we were giving him only a spoon per day and after about a month he was already having half a cup. Today he takes a cup of broth and one-two cups of yogurt daily.
But as Noah was getting better, the summer weather that year was getting terrible. We were sitting home, counting calories while rain was pouring outside and we were getting depressed. Even though we were worried how we will manage the diet far away from home, we decided to go to the seaside to my home country Croatia where he could get some sun. We packed a lot of food and took off. How lucky we were when we found a restaurant that made a Croatian specialty - spit-roasted pig with only salt sprinkled on top of it as it was rotating (what a lovely sight it was- and so unusual for us to be so delighted to see it- as we were never much of meat-eaters)- and Noah absolutely loved it. As he still had some catching up to do (weight-wise), Noah wanted to go there every day and gorge on particularly fatty pieces so in these two weeks he has gained no less than 6 pounds! Luckily he also ate a lot of fish (after all, we were at the seaside) and we added first raw food in the form of diluted orange or lemon juice that we always gave him to drink when he had some meat or fish to improve iron absorption (as most IBD kids, he was anemic- a month after SCD his iron levels were fine and today, 1.5 years afterwards his test results are such that we call him “the iron man”).
He started to thrive- he was like a dried out plant finally getting water (or more likely, finally being able to absorb it). He was in clinical remission about a month afterwards. His calprotectin and CRP levels are all normal. Even his GI was amazed how well he was doing and has started mentioning SCD to some of his other patients. He even suggested we reduce Pentasa so we are slowly down to a half of dose. If Noah continues to do so well, we will try to wean him off completely. We are so happy to have found SCD!! Noah has a younger brother and a sister who was born prematurely just one year prior to his diagnosis, so doing SCD was a challenge, as it does take up lots of time, energy and it is also a financial strain. However, for us it was more than worth it! Noah is really appreciative of the fact that he is so full of energy and able to do sports so he views the diet as his anchor to health and he never cheats (not on purpose that is, we have had 2-3 smaller mishaps). In the mean time our whole family is eating exclusively SCD as a sign of support for Noah, but also because we have realized it is a very healthy and nutritious diet. Even our middle child Adam, who is (was) a very picky eater is now very content about the way we eat and he even started eating a lot of various sorts of vegetables he would not have even looked at before. Also some skin issues he had have gotten better and also some of my autoimmunity issues are improved.
The most trying times are travelling and school trips, but it is doable and makes you develop some creativity and improvising talent. I am already getting mentally ready for our next vacation when it will again seem like we are on a mission to Mars… but if I ever waver I just look at my son and I know what the pay-off is.