Why a balanced diet is important to managing porphyria

While there are no specific dietary guidelines for people with porphyria, eating a healthy, balanced diet is an important part of overall health and wellness. Some approaches to eating and dieting can also trigger symptoms in certain types of porphyria and should be avoided.

Here, we’ll look at some basic guidelines on good nutrition and how some types of diets can have a negative impact on porphyria management. Remember, before making any major dietary changes or taking dietary supplements, speak with your healthcare provider (HCP).

Balanced nutrition

Balanced nutrition is a major component of overall health. This is true for everyone, not just people who are managing a disorder such as porphyria. The American Porphyria Foundation (APF) notes these basic recommendations:

• Eat a variety of vegetables, whole fruits, grains (especially whole grains), and a variety of protein sources, and choose low-fat dairy products.
• Limit your consumption of foods that contain added sugars, saturated fats, trans fats, and sodium.
• Pay attention to portion size and avoid consuming too many calories, which can contribute to obesity and other health problems.

People with porphyria are advised to maintain a diet with an average or higher-than-average intake of carbohydrates, which can lessen disease activity. But they are also advised to avoid refined sugars, corn syrup, and heavily processed foods.

Nutritional needs can vary from person to person, based on lifestyle, health conditions, and medical history. Talk to your HCP about your nutritional needs and how to meet them.

Alcohol

While many dietary guidelines allow for the consumption of alcohol in moderation, people diagnosed with porphyria are advised to avoid alcohol altogether. Alcohol, especially when consumed excessively, can trigger porphyria attacks.

Diets to avoid

While it is important to maintain a healthy weight, and important to lose weight if you are overweight or obese, several popular approaches to weight loss are known to trigger porphyria attacks and should therefore be avoided. Diets that should be avoided include crash diets, diets that involve fasting, and diets that are very low in carbohydrates, such as the ketogenic diet, often referred to as keto.

• Crash dieting is a nonspecific term used to describe diets where people severely limit caloric intake to lose weight quickly.
• Fasting is the practice of abstaining from food and drink for various periods of time, such as 8 hours, 24 hours, or every other day. Fasting is a part of many religious observations and has also become a popular trend in weight loss and wellness.
• With low-carb diets, people greatly limit carbohydrate intake and instead focus on consuming proteins and fats.

Vitamins and supplements

Certain supplements may be recommended by an HCP. For example, people with cutaneous porphyrias need to avoid sun exposure. A lack of sunlight may contribute to a vitamin D deficiency, in which case an HCP may recommend a vitamin D supplement.

The APF emphasizes that people should not take vitamin or mineral supplements unless it's under the guidance of an HCP. People with porphyria are also advised to avoid dietary supplements and herbal remedies, which are not regulated by the Food and Drug Administration (FDA) and may contain substances that could affect porphyria management.

Smoking

In addition to its association with diseases like cancer, COPD, and cardiovascular disease, smoking is a known trigger for porphyria attacks. People with porphyria are advised to abstain from smoking, quit smoking if they do smoke, and avoid exposure to secondhand smoke. They are also advised to abstain from smoking marijuana, as well as using other recreational drugs.