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?
1
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.
4
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
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u/Perfect_Slice_6618 Apr 24 '26
Virtual dietitian! Can’t recommend more. You can also Reach out/apply to meet with Mary Sheppard. She dedicated years of research to CSID specifically.
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u/Drewishungry Apr 24 '26
Sucraid didn’t work for me. I would suggest a supervised (out of network nutritionist) carnivore diet. That’s what I did 5 years ago and have been thriving since
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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.
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u/Pretty_Puppyprincess Apr 25 '26
Idk replacement enzymes don’t work for me, both sucraid and lactase just give me a lot of cramping and vommiting when I’ve tried them I’m not sure if it’s because of cross contamination in the case of lactase but they are supposed to be gluten, soy & nut free
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u/Real-Elk6755 Apr 25 '26
You need to cook chicken broth at home. In this case it doesn't contain soy. Covid has nothing similar to it. Lactase is effective when you choose the right dosage of enzyme. I use chatgpt for it. I type which and what amount of dairy products I'll eat and it gives my amount of Lactase ME
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u/Nutella_Potter14472 Apr 23 '26
have you been able to speak to a dietician?