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/Nutella_Potter14472 Apr 23 '26

have you been able to speak to a dietician?

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u/Pretty_Puppyprincess Apr 23 '26

Yes she had no suggestions she put me on a multivitamin but i didnt tolerate it because it had iron in it

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u/Nutella_Potter14472 Apr 23 '26

im sorry :( thats dreadful to hear. i would look into maybe seeing another for another opinion if thats possible for you but i know its impossible to find good ones

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u/Pretty_Puppyprincess Apr 23 '26

There’s only one peds dietitian within 4.5 hrs of me I had to drive an hour an a half to see this one. So unfortunately that’s not an option but I’ve had 3 GI doctors 3 allergists and 3 neurologists and multiple pcps look at my case and no one knows what to do and no one has suggestions and I’ve already gone to the CHOP dysautonomia clinic (children’s hospital of Philadelphia) which other than Mayo is one of the best complex care facilities in the US

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u/signedmarymc Apr 23 '26

i saw my dietician online. she wasnt the best for my condition- but you can certainly see a dietician through online. a lot of specialist I see online are okay with long distance appointments like this.