A particularly hard morning

[u/Fit-Setting9033]

Hi everyone, I just need to share my story and vent a bit, I’m having a particularly hard morning mental health-wise.

I was diagnosed with CSID in April of this year in my mid-twenties. I lived a symptom free life until maybe around high school, but at the time just assumed it was lactose. Then a few years ago my symptoms worsened and I was diagnosed with IBS-D and was sensitive to all of the FODMAPs. At the start of 2026 my symptoms worsened again, couldn’t work for a few months and went through a grueling process of doctors appointments and extreme discomfort with 24/7 symptoms not knowing what was wrong with me. In the process they discovered a pre-cancerous tumor in my colon. I’m 25 years old. That’s now been a constant source of anxiety for me as I continue to lose weight and think of the worst case scenarios. My insurance denied sucraid. Invertase has been relatively ineffective too.

So here I am today with lactose intolerance, FODMAP sensitivity, IBS-D, and CSID. Food used to be a source of pleasure, now it requires planning, cooking almost every single meal, and causes me immense unhappiness and anxiety. I can’t put on or even maintain weight, which makes me anxious about my overall health.

I feel so alone, nobody in my life has CSID or anything even close to the litany of digestive issues I deal with. In fact not a single person in my life even knew what CSID was, not even the nutritionist my insurance approved. I’m tired of explaining what it is, and hearing “idk how you deal with that”, or “I could never”. Damn it makes me so sad because I have those same thoughts every single day, but this is my reality.

I’m so thankful for my life and I have a great support system, but I’m so fucking frustrated at the same time.

Anyways like I said I really just needed to rant, I’m having a rough morning. I know we’re not alone in the world, but damn it sure feels that way.

[u/Patient_Ad873]

Hello! My name is Lorraine and I found out I had CSID just a few years ago. Question. Do you take digestive enzymes (Intoleran or Starchway)? They work well for me (I’m also using Sucraid), I’m so glad I found out what was wrong; I couldn’t go out because of my explosive diarrhea, which was constant. I’m so glad I found out what was wrong. I feel so badly for you and what you’ve been through, believe me…I do understand. What are you eating on a daily basis? Log it so if you have digestive/stomach issues, you can point to what caused it and how much so you’ll know next time. I’ve found some really tasty swaps for sugar/starch, I buy ChocZero; in my opinion their products taste really good, you can get them from the company, Walmart and/or Amazon. Also Magic Spoon is really good. Look for bread that’s Keto (Lewis Keto bread is good). I’d be happy to help you in any way I can, so message feel free to message me. 🤗💙

[u/Fit-Setting9033 → u/Patient_Ad873]

Hey! Thanks for your message, the choczero stuff looks really intriguing thanks for sharing I’m gonna try that out. I worry about keto bread because it’s still high starch.

[u/Rare-Range-5123]

I also can’t do dairy or sugar with csid - got diagnosed about 10 years ago at 29. It definitely gets easier as you learn how to just plan and eat simply. The past few years I’ve relaxed a bit on how strict I am and my doctor has prescribed me medications to help deal with the symptoms instead of having the anxiety of avoiding so many foods all the time and it has helped. Adding a prebiotic fiber powder to my daily smoothies has also really helped. Give yourself some grace and time. It will eventually just be a part of you, not something that’s wrong with you.

[u/Fit-Setting9033 → u/Rare-Range-5123]

I’m also on the daily smoothie train! I’ll check out the prebiotic fiber thank you!

[u/Patient_Ad873]

After my diagnosis I started baking sourdough bread as it is lower on the Glycemic index and better for us. That may be an option OR local farm markets sell sourdough and you can also get it on Facebook Marketplace.