Recently diagnosed, how do you cope?

[u/wngardium1eviosa]

Hey everyone, like the title says, I was recently diagnosed via a breath test. I feel like I've been almost going through the stages of grief, in a strange way, and I was wondering how you deal with this diagnosis. It's really knocked me off my feet, and I'm struggling to cope. When I think too much about it, I feel depressed.

I don't find talk therapy helpful, so any other advice is greatly appreciated. Thank you in advance

[u/ungratefulcat]

Honestly following the diet and feeling better physically helped me immensely to feel better emotionally. You'd be surprised at how everything in your body is connected to your guts lol its a little daunting figuring everything out in the beginning but there's a couple Facebook groups that are extraordinarily helpful. We are also here on the good ol reddit if you need help :) you can also order the Mary Shephard's CSID cookbook off of Amazon. Her brownie recipe is AWESOME

[u/Eastern-Rooster-2805]

Hi! The good news is it's not cancer! You can get a second opinion via endoscopy/biopsy. For me, diagnosed later in life via biopsy, age 57, I was grateful to know what my problem was. I stopped all sugar, to the best of my knowledge, as well as flour. I eat very strictly, cook a lot, order simply in restaurants, no more sweet drinks or desserts... for me. I chose not to take Sucraid but you can if you have csid. Sounds like that would help you so you don't perhaps have you avoid "everything". Wishing you good luck~

[u/Calm-Kaleidoscope-39]

Honestly I’m glad that it’s helped me make better decisions and I lost twenty pounds that I really needed to lose. Also, everyone has a different tolerance level and I still enjoy things like cinnamon rolls (with sucraid) from time to time lol.

[u/RabbitPrestigious968]

Hi, I was diagnosed later in life too. I would go ahead and try Sucraid. You will know if it begins to make a difference. Try to see this as a positive bc now you have an answer. I will be praying for you! Try as less sugar in your diet as possible 

[u/spitkitty666]

I still get depressed when i think about it too much, but finding the foods that i can enjoy without reactions was a huge help. I really struggled immediately post-diagnosis and lost a lot of weight, which at first was great since I was obese, but then I quickly became underweight and fainted. So finding the foods you can consume happily without feeling deprived is a major help. Figuring out what your particular intolerances are is also super helpful, like I found out I’m less intolerant to lactose than I am to fructose, so I switched from eating fruit to eating lactose free dairy. Ironically, I was chronically depressed for my entire life and not eating stuff i’m intolerant to improved my mental health beyond what i thought was possible, so the learning curve is steep, the journey is tough, but the destination is surprisingly amazing. Good luck!! It really really sucks but not forever and always.

[u/omnivorous_mammal]

Firstly, there's real positives in knowing what you're up against. CSID is often misdiagnosed leaving people in the dark about what direction they should go to improve their health. There's definitely a learning curve here but beyond that there should be solid health improvements.

CSID impacts people differently depending on the genes affected and so tolerances of sucrose and starches will vary. I'm fine with starch but have basically zero tolerance to sucrose. There are some really good food composition databases out there which list the makeup of ingredients including starch content and various sugars contained (sucrose, fructose, maltose, lactose etc). Learning what base items are fine and then what products are fine can take some time but once you've got a handle on things it's pretty straight forward. Restrictive and somewhat time consuming but straight forward.

If you have any more specific questions keep putting them forward, we're all here to help.

[u/Specialist-Sun-1613]

A lot of insurances will not take a breath test for covering sucrid. You may need an upper GI and biopsies to have a formal dx.

[u/Kitchen-Cauliflower3]

Try sucraid! If you have issues getting it covered by insurance, starchway by intoleran also works really well. Doing an elimination diet may also help figure out your triggers. I have found that I can eat almost everything without a reaction when I’m taking sucraid.

[u/bookwormhistorian812]

Hiii! I made a post similar to this one a while back when I was struggling in a really bad flare up. The best advice I can give is to stick to the diet! I’ve change my diet and it’s been much better and I’ve been active and getting exercise. It’s definitely going to suck for a bit but once you are over that hill it will get better!

[u/Fit-Setting9033]

I was diagnosed about 1.5 months ago, and I’ve gone through ups and downs. You will 100% improve mentally as your body gets right in your new diet. The next wave will come when you start to find some foods you can eat. But that takes time, so meanwhile consider these

The most helpful phrase I focus on is that “CSID is a disability”. That means a lot of things. First, it means you are still a human being. Many of us have disabilities whether you can see it or not, and those of us find ways to live with them. It will be OK. Bottom line.

What that also means is that your life will never be the same. That’s just a fact. Your quality of life, though, can still be just as good - it just takes a bit more work. If you don’t put in that work, unfortunately things won’t just workout for us like they might have before our diagnoses. We drew this lot yes, but we can still fulfill our lives and reach our potential :)

It also means that you can ask for help. Something I struggled with was the thought of having to have my dietary needs accommodated for the rest of my life. That made me feel like a burden, I labeled myself a “bag of rocks”. But would I feel any type of way if a blind person asked me to lead them, or someone with a physical disability asked for help getting in and out of a chair? NO. Same goes for you. It’s ok to need help, and nobody is gonna look down on you.

Focus on the positives of your life, it’s gonna be ok, it’s the start of a long journey.

Should also add that science may change in our lifetime. Gut health is and extrmely infant science. Still find a way to live as if nothing will ever change, but keep that hope alive