It sounds as though you are doing very well! What foods are you avoiding at the moment? Did you retest all the foods that seemed to bother you, to confirm whether you did indeed react to them? Did you test each new food for 4 days, or longer?
1800 is very high for calprotectin! My result was >1800, meaning that the lab is able to read levels up to 1800, and I was above that level. I send my samples to a lab in the UK that the Professor recommended, and normal is less than 50. Something WAS up though with the lab at the time, as I definitely had some symptoms (near-liquid stools) but I wasn't SOOO ill (only one BM per day, and feeling completely healthy in all respects other than the BMs), and subsequently Professor Hunter had his patients send their samples to a second laboratory for a period of time so that the first one could tighten up it's technique of measuring calprotectin. Apparently several other of his patients had strange readings at that time. All of this was unfortunate for me, but still, given my symptoms, I was clearly not doing that well without the asacol, even if there was some inaccuracy in my calprotectin level.
The Greek equivalent of the NHS doesn't pay for any of my treatment, neither elemental nor calprotectin tests, nor of course my trips to see professor Hunter. So, I can do calprotectin tests as often as I like, but I have to pay for it.
That's interesting about your reactions not being only loose stools. I am back on lofflex now since January due to the pregnancy, and if my next results are good I am supposed to restart food testing. I was on 2.4g asacol per day for this entire three year period, I currently am on 4.8 because I had mild symptoms during pregnancy and a raised calprotectin afterwards. So I will pay more attention to things other than just my BMs when I start testing foods again.
I know what you mean about being terrified to eat out. This does make traveling very difficult, and even socializing is tough.
You asked about my BMs: 99% of the time they are perfectly formed. I go like clockwork after breakfast and I almost never go more than that (maybe twice a year I have 2 BMs in the same day). It doesn't really vary very much. Sometimes they are softer, which sets my alarm bells ringing, but in general formed, firm, one per day.
According to Prof Hunter, during pregnancy his patients usually do well, and can eat foods they couldn't tolerate previously. After pregnancy the opposite may be the case. So yes, my current high readings are almost certainly hormonal, but crohns can have a momentum of its own, and there is no telling whether my crohns will settle once my hormones do. So I have to keep things under tight control. I am getting another calprotectin done this week, i expect the results to be in by Friday, crossing my fingers it's better than last time. (I had 302 three weeks ago, when I have been consistently below 50 for AGES now). Well done on the 40, that's terrific! It took me a long time to get down to below 100, the entire first year of treatment I was around 150, and only afterwards settled at lower levels.
I have a local GI in Greece, as I can't exactly get on a plane to see Dr Hunter for every issue that comes up. He is just a regular GI though, who believes in drugs not diet. However he has been happy enough to take a back seat and let me try my dietary strategies, and he is there for checkups and should I decide I need to go the azathioprine route. I may decide to schedule one more visit to see Prof Hunter before he retires.
I agree with your suggestion about starting a lofflex thread. There aren't too many people on the forum who have tried this diet and been successful, maybe about 4-5? Still it would be helpful for those searching for an alternative to immunosuppressants and steroids, or for those who are in the early stages of the diet and need feedback and advice. Take care, and well done, it sounds like you are doing really really well.
