Sugar and Starch Free, No Problem

If you’ve been part of this CSID community for a while, you might have noticed I’ve taken a step back, especially in sharing recipes as regularly as I once did.

I want to be honest about why that is, because the group deserves transparency on the topic.

I’ve been navigating some personal health challenges of my own, as I was diagnosed this summer with an autoimmune condition that has led to Hashimoto’s, along with miscommunication around another test that was supposed to check for celiac disease. It turned out the procedure I originally went in for never actually checked me for it five years ago when I was given my CSID diagnosis. If you’ve followed this health journey, you also know how I’ve been feeling about our healthcare system in general.

Since I’ve been navigating this on top of just really low energy, I have to use what I can to finish up elective coursework to apply for a coordinated master’s program in clinical dietetics. I’ve taken a moment to step back because running a recipe-focused community requires creativity and effort I’ve needed to devote to other parts of my life.

There are additional reasons why I’ve tended to stop sharing recipes, though. I have had members share that the content I’ve posted isn’t appropriate to their specific diets. That feedback seems fair, but it also prompts me to reflect on the nature of a CSID diagnosis.

Sucrase-isomaltase deficiency is highly variable in its impact on people’s tolerance levels. It’s why, when I included recipes, I always try to either add substitutions or highlight which parts might cause digestive issues. Again, I’m not a trained medical expert, so I always restate that what works for me might not work for you. CSID is less about a single diet that fits everyone and more about a personal health journey to feel better. Even foods considered “safe” on the CSID list can be tolerated differently by patients, and that reality makes universal recipe advice nearly impossible without extra caveats, such as including substitutions or highlighting items that not everyone may tolerate. It also made me question whether that one-size-fits-all sharing was really serving the CSID community the way I wanted it to.

So after a lot of reflection, I’ve landed on a path forward with this CSID health journey blog, and I want to share it with you.

I will mostly be directing you to a community that was built for CSID recipe sharing: the CSID Recipes and Food Support community on Facebook, which is filled with some of the kindest and most knowledgeable people I’ve encountered on this journey. It’s about members supporting members and sharing what works for their bodies. I will still be sharing recipes on my Instagram page, and if I find really simple ones that I feel are worth sharing, I’ll add them here with my usual notes on substitutions.

I want to shift my focus here more toward what I believe adds the most value to our little community: the scientific news happening in the CSID and food allergy community (I might also throw in some autoimmune news, especially related to Hashimoto’s, but will have a separate tab on the page for it), along with practical tips and tricks for living with the diagnosis. I’ll include research developments, trustworthy resources, gadgets, and apps I use to make life a little easier. These are things that benefit everyone regardless of their individual tolerance levels, and clinical research in rare diseases is something I’ve become passionate about sharing with all of you.

Thank you all for your patience as I navigate my own new health obstacles and have been quieter on this page because of it, and for always showing up for one another. I appreciate being able to serve this community with accurate and informative information, and I look forward to continuing to do just that.

With love and gratitude,

Jenny

I included a photo of my other newest hobby, which is a flock of backyard chickens that keeps me incredibly busy and entertained.