Our Journey So Far SCD CDED Experiences

[Pam.estella]

Hello, I haven't really posted a lot of our story, but seem to continually check back here for information. Having seen a lot of questions from parents about diets I thought our experience might offer some help for others. Forgive me in advance for not knowing all of the correct abbreviations LOL

Our son (19) was diagnosed about 5 years ago. ALL of his labs returned normal except for Calprotectin which came back at 990. We then proceeded to imaging and received a confirmed diagnosis. Ileal Chron's with possible stricture. At this time we had been on a gluten free diet for about 5 years already. I (Mom) am adopted and had learned that my biological mother had Crohn's disease but sadly lost her life at the age of 52 due to complications from Crohn's and never did get to meet her. His diagnosis was very unexpected and really forced me to start the process of researching as much as possible. Our hope was to delay medicating him with biologics as long as possible because we didn't want him to be out of pharmaceutical options before he was even 30. So we chose to start with diet. Because Calprotectin was his only abnormal lab it is what we have used to sort of monitor his progress and it has been reasonably accurate, but aware that this does not work for everybody.

We started with EEN and lowered his Calprotectin to about 750.
Tried Mesalamine but he had an allergic reaction.
Started Budesonide which helped lower his Calprotectin to the 600's
We then started SCD - he proceeded to lose 10 lbs pretty rapidly which scared the doctor, but I created a 1000 calorie shake and his weight started to come back up. We continued on SCD and monitored his labs which would bounce from 200-300. He became symptom free and we stayed in this pattern for a few months, but the doctor wasn't satisfied so we added a 7 month course of Vancomycin & Budesonide together. His GI then moved out of the area and we had to switch doctors. His new doctor was firmly opposed to our plan, but allowed us to finish and at the end of 7 months for the first time his Calprotectin dropped below 50. We would then check every few month and it started to creep up to 200 - then 300 then 500. (At this time he had just found a new recipe for a peanut butter honey candy thing and was eating WAY too much of that so I personally think that contributed to the jump) Anyway his doctor said you have to do something else so after some research she agreed to the CDED diet.

We were on the CDED for 3 months and then tested his Calprotectin and it came back over 2200! Yikes. We immediately went back to SCD and his level dropped back down to 200 in a little over a month. As a very interesting side note he had a persistent patch of psoriasis on his eyelid that completely cleared up on CDED and has never returned.

He then had a scope which obviously showed inflammation. At this point I had thought we would definitely be switching to a biologic drug so for the first time in over 2 years we had a cheat meal and in less than a month he had a partial blockage. (I'll always wonder about that cheat meal)
After that we started Humira. His first labs showed progress and we were optimistic but it has gradually worsened and MTX was added which now is also not working well enough. It turns out he does not have a stricture and his inflammation is significantly lower but he still has ulcers so we will be changing drugs soon. We continue to eat mostly SCD at home, but he does cheat regularly now that he is medicated and somewhat independent. His doctor told me today that his diet is likely the reason he isn't worse.

Following SCD is not easy and obviously doesn't work for everybody but it is sustainable and it does make a difference.
If it were me I would retry EEN and see if we could get better results on a different product, but now at his age don't think he's willing unless there aren't other options.

I fall firmly in the camp that Crohn's is caused by an unidentified infectious agent of some kind. It just makes more sense that the human body is attacking something we haven't been able to identify rather than attack itself.

Hopefully this long post has some useful information for people questioning the role of diet.

 

[Andersen007]

hi @Pam.estella ! I was diagnosed in December 2022, with ileal Crohn's that was deemed "mild", my symptoms mostly being 4-5 times liquid-ish diarrhea and sometimes weird abdominal pains. But I have very loose stools for more than 10 years that was never investigated in depth, was just deemed IBS, so I suspect I had this building in me for quite a while.

EEN didn't work out well for me, at least the formulas that I have tried, I have suspicion that I cannot tolerate milk derived proteins. CDED seemed to improve things somewhat, without formulas, but didn't cause a step change. SCD was also the diet that worked for me, in a few months reduced my calprotectin from 1200 to 135. However I found that there are many things on SCD that I cannot tolerate, including most fruits, alcohol, milk proteins, or too much almond flour in a single meal. On my bachelor's party trip in May, I ended up drinking quite a lot of alcohol and had a cheat meal, and took me 2 months to get back control although arguably still not in the same shape as before. Currently I typically have 1, or occasionally 2 stools per day, that starts out solid but often ends up mushy by the end of it. Planning to measure calpro again soon. Fortunately no other symptoms and even this one is more of a nuisance and not really disrupting my life.

I didn't take any medication yet during this journey but I can easily imagine it being neccessary at some point. I think not exhausting the therapeutic arsenal too early argument has a lot of merit as long as inflammation is under control. And this gives me room to understand what foods help my disease and what makes it worse, without the picture being blurred by medications.

Did your son have recurring symptoms, or more / looser stools when his calpro went up to 2200 on CDED?

 

[Pam.estella]

Hi @Andersen007 - Happy to hear you have had some success with diet alone. I think there are a lot of different EEN formulas available but definitely probably a trial and error period for everybody finding one that will work. Have you heard of or tried the FODMAP diet? I wonder if there could be some benefit in the combination or overlap with SCD and FODMAP & paleo? For my son his age at diagnosis was problematic because of all the restrictions and his unwillingness to eliminate more foods. We have added in a few different starches occasionally (tapioca or arrowroot) to make better desserts and not use quite so much Almond flour.
Hopefully you only have one bachelor party in your life - then it may have been worth it .

I have also seen several trials that treatment naive patients respond better/differently to some of the new options being investigated, so another argument for delaying medicating if it's possible. It feels difficult to consider medication without a lot of symptoms when for some people being symptom free is a goal - so for now I take his relative lack of symptoms as a win & hope you do too.

He did not communicate to me any change in his symptoms, and when I do ask he usually just responds that nothing has changed. It seems hard to believe he didn't notice anything with that big of a jump! His doctors up to that point had mostly dismissed the idea that diet could make a difference, but when I pointed out that it is the only thing that had changed in the period it jumped from 500-2200 it opened his eyes a little bit. I suspect he will get better at noticing changes as he gets older. He is also paying closer to attention to specific foods and dairy specifically seems to be problematic.