None of the patients in any of the phenotypes can tolerate the following sweeteners: hydrogenated glucose syrup, galactose/maltose/malt sugar, acesulfame K, maltitol/maltitol syrup, brown rice syrup, NutraSweet/neotame, or Stevia/diterpene glycosides. Sucrose can be tolerated in only extremely small amounts without enzyme supplementation, whereas crystalline glucose, dextrose, corn syrup, crystalline fructose/levulose, and Equal can be used without problems. Specific dietary recommendations are available for patients and families with variations of CSID phenotype and can be found at CSIDInfo.com. Food recommendations were developed only after an extensive review of food diaries.
The CSID Parent Support Group has had experience with 4 enzyme replacements for patients with CSID. Without enzyme replacement, patients are limited to approximately 100 foods they can eat without difficulty. With enzyme replacement, this number increases to approximately 400 foods, significantly improving the patient's nutrition and dietary selection. Specific enzyme supplement and diet recommendations are available from the CSID Support Group for each phenotype:
1. Sucraid (United States) manufactured by QOL Medical LLC. E-mail: firstname.lastname@example.org.
2. Bi-Myconase (the Netherlands, supplies Europe) manufactured by EPC Pharma. E-mail: email@example.com and Web site http://www.mpf-pharma.nl. Other over-the-counter multiglucosidase enzymes are available worldwide.
3. Digestion Formula Forte (Canada) is manufactured by Future Formulations. E-mail: firstname.lastname@example.org. Other over-the-counter multiglucosidase enzymes are available worldwide.
4. Lactase is manufactured by McNeil Nutritionals LLC. Other over-the-counter oral lactase enzymes are available worldwide.
The CSID parent support group has developed a specific diet for each phenotype based upon small intestinal assays of enzyme activity and careful review of dietary diaries. This information is available to anyone diagnosed as having this condition and is available online at CSIDinfo.com. Enzymes therapies are available worldwide, and appropriate suggestions are available upon request.
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