Accidental Consumption of Aspartame in Phenylketonuria: Patient Experiences

Newbould, Ella; Pinto, Alex; Evans, Sharon; Ford, Suzanne; O’Driscoll, Mike; Ashmore, Catherine; Daly, Anne; MacDonald, Anita

doi:10.3390/nu13020707

Cited by 11 publications

(10 citation statements)

References 15 publications

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“…Importantly, aspartame content is exempted from inclusion in the labelling of alcoholic drinks. [ 11 ]. Several examples were given of inconsistent aspartame identification on the labels of fruit squashes or drinks bought from shop vendors.…”

Section: Discussionmentioning

confidence: 99%

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The Challenges and Dilemmas of Interpreting Protein Labelling of Prepackaged Foods Encountered by the PKU Community

et al. 2022

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Phenylketonuria (PKU) can lead to severe intellectual impairment unless a phenylalanine-restricted diet starts early in life. It requires expert user knowledge about the protein content of foods. The ability of adults or caregivers of children with PKU to calculate protein exchanges from food labels on manufactured foods and any difficulties they encounter in interpreting food labels has not been studied systematically. Individuals with PKU or their caregivers residing in the UK were invited to complete a cross-sectional online survey that collected both qualitative and quantitative data about their experience when calculating protein exchanges from the food labelling on prepackaged foods. Data was available from 246 questionnaire respondents (152 caregivers of patients with PKU aged <18 years, 57 patients with PKU aged ≥18 years or their caregivers (n = 28), and 9 teenagers with PKU). Thirty-one per cent (n = 76/246) found it difficult to interpret food protein exchanges from food labels. The respondents listed that the main issues with protein labelling were the non-specification of whether the protein content was for the cooked or uncooked weight (64%, n = 158/246); labels stating foods contained 0 g protein but then included protein sources in the list of ingredients (56%, n = 137/246); the protein content being given after a product was prepared with regular milk rather than the dry weight of the product (55%, n = 135/246); and the non-clarity of whether the protein content was for the weight of prepared or unprepared food (in addition to non-specification of cooked or uncooked weights on food labelling) (54%, n = 133/246). Over 90% (n = 222/246) of respondents had experienced problems with food labelling in the previous six months. Misleading or confusing protein labelling of manufactured foods was common. The food industry and legislators have a duty to provide accurate and clear protein food labelling to protect populations requiring low protein diets.

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Section: Discussionmentioning

confidence: 99%

“…Several examples were given of inconsistent aspartame identification on the labels of fruit squashes or drinks bought from shop vendors. Detailed information about the perceptions of aspartame and food labelling of patients or caregivers of patients with PKU has been reported [ 11 ].…”

Section: Discussionmentioning

confidence: 99%

The Challenges and Dilemmas of Interpreting Protein Labelling of Prepackaged Foods Encountered by the PKU Community

et al. 2022

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“…Persistent consumer pressure from the food industry and busy working adult lives has led to increased dependence on processed foods which are commonly not low in Phe or may have unreliable protein labelling information [ 25 ]. In addition, societal efforts to reduce the sugar content of foods has also led to sugar replacement by artificial sweeteners such as aspartame, another unquantified source of Phe [ 26 ]. Pre-existing social disadvantages such as parental poor literacy, health literacy and poverty may render some children particularly vulnerable.…”

Section: Discussionmentioning

confidence: 99%

Metabolic Control of Patients with Phenylketonuria in a Portuguese Metabolic Centre Comparing Three Different Recommendations

et al. 2021

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Blood phenylalanine (Phe) is used as the primary marker to evaluate metabolic control. Our study aimed to describe the metabolic control of patients with phenylketonuria (PKU) comparing three different treatment recommendations (European guidelines/US guidelines/Portuguese consensus). This was a retrospective, observational, single centre study in patients with PKU collecting data on blood Phe levels from 2017. Nutritional intake data and sapropterin (BH4) prescription were collected at the last appointment of 2017. The final sample studied included 87 patients (48% females) [13 hyperphenylalaninemia; 47 mild PKU; 27 classical PKU] with a median age of 18 y (range: 1–36 y). The median number of blood Phe measurements for patients was 21 (range: 6–89). In patients aged < 12 y, the median blood Phe level was 300 μmol/L (range 168–480) and 474 μmol/L (range 156–1194) for patients ≥ 12 y. Overall, a median of 83% of blood Phe levels were within the European PKU guidelines target range. In patients aged ≥ 12 years, there was a higher median % of blood Phe levels within the European PKU guidelines target range (≥12 y: 84% vs. <12 y: 56%). In children < 12 y with classical PKU (n = 2), only 34% of blood Phe levels were within target range for all 3 guidelines and 49% with mild PKU (n = 11). Girls had better control than boys (89% vs. 66% median Phe levels within European Guidelines). Although it is clear that 50% or more patients were unable to achieve acceptable metabolic control on current treatment options, a globally agreed upper Phe target associated with optimal outcomes for age groups is necessary. More studies need to examine how clinics with dissimilar resources, different therapeutic Phe targets and frequency of monitoring relate to metabolic control.

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“…A UK study found many people suffering from phenylketonuria choose products without being aware of the amount of aspartame they contain; it is believed that the sugar tax in the country increases the use of sugar substitutes, including aspartame. In addition, approximately 25% of patients reported consuming aspartame with medications [134]. Studies have found aspartame and phenylalanine levels to vary between soft drinks; however, some consist of small amounts of APM and Phe, and could be safely consumed by patients with hyperphenylalaninemia and those treated with 2-(2-nitro-4trifluoromethylbenzoyl)-1,3-cyclohexanedione (NTBC) (van Vliet et al, 2020).…”

Section: Phenyloketonuriamentioning

confidence: 99%

Aspartame—True or False? Narrative Review of Safety Analysis of General Use in Products

et al. 2021

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Aspartame is a sweetener introduced to replace the commonly used sucrose. It was discovered by James M. Schlatter in 1965. Being 180–200 times sweeter than sucrose, its intake was expected to reduce obesity rates in developing countries and help those struggling with diabetes. It is mainly used as a sweetener for soft drinks, confectionery, and medicines. Despite its widespread use, its safety remains controversial. This narrative review investigates the existing literature on the use of aspartame and its possible effects on the human body to refine current knowledge. Taking to account that aspartame is a widely used artificial sweetener, it seems appropriate to continue research on safety. Studies mentioned in this article have produced very interesting results overall, the current review highlights the social problem of providing visible and detailed information about the presence of aspartame in products. The studies involving the impact of aspartame on obesity, diabetes mellitus, children and fetus, autism, neurodegeneration, phenylketonuria, allergies and skin problems, its cancer properties and its genotoxicity were analyzed. Further research should be conducted to ensure clear information about the impact of aspartame on health.

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Accidental Consumption of Aspartame in Phenylketonuria: Patient Experiences

Cited by 11 publications

References 15 publications

The Challenges and Dilemmas of Interpreting Protein Labelling of Prepackaged Foods Encountered by the PKU Community

The Challenges and Dilemmas of Interpreting Protein Labelling of Prepackaged Foods Encountered by the PKU Community

Metabolic Control of Patients with Phenylketonuria in a Portuguese Metabolic Centre Comparing Three Different Recommendations

Aspartame—True or False? Narrative Review of Safety Analysis of General Use in Products

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