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Congenital Sucrase Isomaltase Deficiency prognosis

What is the prognosis if you have Congenital Sucrase Isomaltase Deficiency? Quality of life, limitations and expectatios of someone with Congenital Sucrase Isomaltase Deficiency.

Congenital Sucrase Isomaltase Deficiency prognosis

Congenital Sucrase Isomaltase Deficiency (CSID) Prognosis


Congenital Sucrase Isomaltase Deficiency (CSID) is a rare genetic disorder that affects the ability to digest certain sugars, specifically sucrose and starch. This condition is caused by mutations in the sucrase-isomaltase (SI) gene, which leads to a deficiency or absence of the enzyme sucrase-isomaltase in the small intestine.


The prognosis for individuals with CSID can vary depending on the severity of the condition and the individual's ability to manage their diet. Some individuals may experience mild symptoms and can lead relatively normal lives with proper dietary modifications, while others may have more severe symptoms that can significantly impact their quality of life.


Management and Treatment:


The primary treatment for CSID involves dietary modifications to avoid foods that contain sucrose and starch. This typically involves following a strict low-sugar, low-starch diet, which can help alleviate symptoms and improve overall digestion. Working with a registered dietitian who specializes in CSID can be beneficial in developing an appropriate meal plan.


In some cases, enzyme replacement therapy may be considered. This involves taking oral supplements of the missing enzyme sucrase-isomaltase to aid in the digestion of sugars. However, the effectiveness of this therapy can vary among individuals.


Prognosis:


The long-term prognosis for individuals with CSID is generally positive with proper management. By adhering to a strict diet and avoiding trigger foods, individuals can experience a significant reduction in symptoms and improve their overall digestive function.


However, it is important to note that CSID is a chronic condition that requires lifelong management. Compliance with dietary restrictions and regular follow-up with healthcare professionals are crucial for maintaining optimal health and managing symptoms effectively.


With advancements in research and medical understanding, there is ongoing progress in the development of new treatment options for CSID. This provides hope for improved outcomes and quality of life for individuals with this condition in the future.


Diseasemaps
3 answers
From a baby to a child to a teenager to an adult my symptoms improved. I believe my tolerance increased as I got older. I do still 100% have the condition just the symptoms are slightly lesser than as a child. This is possibly partly down to awareness/better food decisions.
I will have this condition for life. It is an inconvenience, but it does not rule my life, I still do all the things I want to, I am a fit, active and healthy person. Wether later in life I will experience bowel problems due to my symptoms over the years, only time will tell.

Posted Mar 8, 2019 by Simone 3215
I am 50 and was diagnosed at 3. CSID only affects my ability to eat certain foods and does not have a major impact on my life

Posted Nov 15, 2021 by Tracey 3000

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CONGENITAL SUCRASE ISOMALTASE DEFICIENCY STORIES
Congenital Sucrase Isomaltase Deficiency stories
Diagnosed at age 6 in Melbourne. No known family history of disease. No sucraid available in Australia so diet only to treat condition. Normal lactase enzyme but sucrase and maltase levels extremely low or non existent.  
Congenital Sucrase Isomaltase Deficiency stories
My son has CSID. Diagnosed at 5 years of age. It's been a long journey to get to this point.  As there is no access to sucraid in Australia, we are purely trying to manage by diet alone.  As a mother, I will always be a voice for my young son and...
Congenital Sucrase Isomaltase Deficiency stories
my name is Millie and I was diagnosed with SI at age 18 months as I didn't fall under the top four genetic mutations of CSID and it was too expensive to continue testing, but I follow the exact same diet and can't have sucrose or much starch. I have ...

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Congenital Sucrase Isomaltase Deficiency forum

CONGENITAL SUCRASE ISOMALTASE DEFICIENCY FORUM
Congenital Sucrase Isomaltase Deficiency forum
Hello, Just curious, do any of you struggle with UHT milk? I am fine with all other dairy but for some reason UHT is a no go for me. For the life of me I can't figure out why, there are no added sugars. I'm wondering if this is a 'CSID thin...

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