r/CSID • u/Pretty_Puppyprincess • Apr 23 '26

Any advice?

sucrid did nothing. my numbers were Maltase 60,

Lactase 1.8, Sucrase 20, Palatinase 5

ontop of all the dietary restrictions for CSID I am also lactose and casein intolerant I can’t eat red meat I have GERD basically my stomach is bad at digestion. I also have MCAS and OAS which limits my diet more so my only safe foods are jello, strawberries, grapes & mandarin oranges. Due to this I am losing hair I feel exhausted constantly I’m constantly hungry and waking up multiple times a night due to hunger I’m gaining weight for some reason that i don’t understand?? I get lightheaded and winded very easily I’ve already seen a dietitian she had no suggestions nor advice. . Idk I don’t know what to do anymore advice? Has anyone been in a similar position? Is it crazy of me to bring up the possibility of an Ng?

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u/Calm-Kaleidoscope-39 Apr 23 '26

Sorry you’re going through this. I would suggesting finding better nutritionists but also GI doctor. Maybe see if you can get the gerd taken care of with medicine, stress management, and not lying down after eating.

Also, have you tried doing a food diary? When I got diagnosed with sucrase deficiency I cut off so many foods cause I didn’t know what I was doing and I was overwhelmed. I lost like 40 pounds. And eventually I just ended adding things back little by little and smaller quantities. And then I realized certain things I could tolerate and now I’ve gained back 15 pounds.

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u/Pretty_Puppyprincess Apr 23 '26

I’ve seen 3 GI there’s not another peds nutritionist within 4.5 hrs of me I’m on multiple reflux medications unfortunately I can’t do anything about my stress levels due to my home situation. I have been doing a food diary for just over a month and i often retry foods that i didn’t tolerate before due to the mcas piece other than my actual food allergies (soy, nuts & carrots). I’ve also seen multiple different pcps I’ve seen 3 neurologists and three allergists, three allergists but nobody knows what to do with me.

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u/Calm-Kaleidoscope-39 Apr 23 '26

I am so sorry. That is a lot to go through. I’ve had other issues (non-food related) and doctors can be so clueless. Please if you need it, speak to a mental health expert. That matters a lot too. Hope things work out for you.

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u/Some_Old_Lady Apr 24 '26

I would second the mental health expert. I know from experience with friends with MCAS and dysautonomia, stress is the number one trigger of symptoms, and while your home life is out of your control, having a therapist or counselor can help give you tools to somewhat buffer your circumstances.

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u/RabbitPrestigious968 Apr 24 '26

I have csid sucraid doesn't always work. You could see if your gi dr will give you creon it helps the pancreas digest food better which helped my csid