While there are no specific dietary guidelines for people with porphyria, eating well is still an important aspect of overall health and wellness. Also, there are also some approaches to eating and dieting that can trigger symptoms in some types of porphyria, which 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 bodyweight, 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 utilize fasting, and diets that are very low in carbohydrates (such as the ketosis diet, often referred to as “keto”).
- Crash diets are 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 (variations include 8 hours or 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, patients 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. However, the APF emphasizes that patients should not take vitamin or mineral supplements unless it's under the guidance of an HCP. They 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 associated 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.
