Finding out what the problem is

The first step is to understand what is causing the problem. There are different possible scenarios to consider, for example:

1. A substance is accumulating in excess and a limitation in intake is required. Hemochromatosis is a condition in which the body absorbs too much iron from food, so there is a need for a dietary intervention to limit iron intake.
2. A specific protein cannot be synthesised and needs to be supplemented. In type I diabetes, insulin cannot be produced by the pancreas and requires supplementation throughout life via injections. This condition cannot be managed via dietary action alone.
3. A drug alters a pathway, causing accumulation of a certain substance and excess of it results in toxicity. Alkaptonuria patients have to manage their protein intake while taking the drug Nitisinone, as the drug causes excessive accumulation of tyrosine if not managed via nutritional intervention.

It is important to closely work with medical professionals to research what the problem is. Identification of where the fault lies must be evidence-based and this requires specific medical knowledge and testing.

Once the origin is identified, a plan can be devised to select what dietary action is most optimal with the help of dietitians. A common healthy diet might be harmful, so it is crucial to be specific in the identification of the cause.

Not always the obvious solution

A possible scenario might also include diseases which are not directly caused by the inability to process certain compounds acquired through diet, but in practice could substantially benefit from nutritional management. An example of the power of nutrition can be seen through the effects of the ketogenic diet on patients affected by epilepsy. This specific food regimen helped achieve a seizure-free life in some cases and alleviated frequency and severity of seizures in many. Diet can help patients even if their disease is not directly related to food metabolism.

Charlie Foundation for epilepsy

Understanding the problem

If patient groups are to advise their communities about managing their diet, they must first understand what the identified problem is and what it means in practice. To do this, you can work with researchers and dieticians, but you can also look at scientific literature yourself.

This can take a long time but do not be discouraged: a steady and consistent approach will produce results, letting you become knowledgeable about your own condition.

You can find literature at:

https://www.ncbi.nlm.nih.gov/pubmed/

https://scholar.google.com/

To start, type in the name of your disease, search, and select reviews in article type. This will provide you with work containing the general understanding of the disease at any current time. Remember to check the date of publishing: the more recent, the better.

Understanding what you should eat

Memorizing all the foods to avoid can be a difficult task. One good way to identify what to eat is to understand what substance needs to be removed or supplemented and create a list of all the products that contain it.

For example, lipoprotein lipase deficiency (LPLD) patients need to avoid ingestion of fats since their bodies cannot process them appropriately. This led to the development of a diet which aims to keep consumption of fats between 10g to 20g a day maximum. People in their community share ideas of low-fat foods and recipes with each other.

Different patients are going to have different necessities and tastes, so it is important to find an approach that allows them to stick to the diet while not making those limitations unbearable.

You can easily find the macronutrient content (proteins, carbohydrates, and fats) of most foods by searching for them on Google.

Nutritional management and drugs

If a metabolic condition is treated by drugs, nutritional management may still be needed. Drugs do not provide a boost from 0% to 100% when it comes to managing disease. They are one factor in a multifaceted problem, which can require different approaches to improve it. So, while drugs can help, they will most likely not solve all your patients’ problems.

Furthermore, sometimes drugs can create a need for nutritional management. For example, patients with Alkaptonuria (AKU) taking Nitisinone should monitor their daily protein intake.

You can find out more about AKU in our case study later in the course.