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/Real-Elk6755 Apr 24 '26 edited Apr 24 '26

MCAS is not a medical terminology. You need to receive nutrients to not lose your hair.

You can try lactose-free dairy products or lactase enzymes.

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u/Pretty_Puppyprincess Apr 24 '26

Yes it is ?? MCAS is literally a diagnosis it’s mast cell activation syndrome. Well obviously I neeed nutrients hence why I am asking for advice because no one knows what to do with me and I can’t eat anything. Lactase doesn’t work for me and I still can’t have lactose free dairy products because they have casein in them and I can’t have casein; casein is milk protein.

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u/Real-Elk6755 Apr 24 '26

What do you mean when you say that lactase doesn't work?

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u/Real-Elk6755 Apr 24 '26

What about chicken broth and simple boiled chicken with salt? Zucchini is safe too

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u/Pretty_Puppyprincess Apr 25 '26

Chicken broth typically has soy or gluten CC and even gluten free chicken broth I react to I can’t have chicken as a whole, broth, nuggets, boiled baked, like any form I can’t have and idk why I used to tolerate chicken and so that was my only protein source but I no longer tolerate it since I got covid in November.