Dietary Concerns in People With XLH

Dietary Concerns in People With XLH
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X-linked hypophosphatemia (XLH) is a rare genetic disorder characterized by low levels of phosphate in the blood. Since phosphate is an important mineral required for proper bone and tooth development, XLH patients develop rickets-like symptoms, such as osteomalacia (soft and weak bones), early osteoarthritis, fractures, pain, dental abscesses (buildup of pus in the teeth), and stunted growth.

Proper nutrition is essential to manage the symptoms of XLH. Here are some dietary considerations you should keep in mind if you have been diagnosed with XLH.

Understand that vitamin D alone is not sufficient

Unlike rickets, which is caused by vitamin D deficiency, the rickets-like symptoms in XLH are due to the excess excretion of phosphate by the kidneys. Therefore, vitamin D supplementation alone is not sufficient to slow the progression of disease symptoms.

Consider using supplements that contain phosphate along with a combination of vitamin D (in the form of calcitriol) and calcium. However, never use any supplement without first consulting a doctor. Remember that if you are undergoing XLH therapy such as treatment with Crysvita (burosumab), you may need to completely avoid phosphate and vitamin D supplements.

Eat foods rich in phosphorus

Foods such as milk, cream, yogurt, fish, eggs, bran cereals, and soy products are rich in phosphorus. These can help in replenishing the lost phosphate in XLH. If you are lactose intolerant, consult your doctor or a dietitian for alternatives to dairy products.

Eat soft foods

Children with XLH are prone to dental abscesses, while adults can develop a serious gum disease called periodontitis. These conditions can make chewing food difficult, so ensure that the food you eat is mashed well and can be easily swallowed.

Be sure to avoid sugary foods, energy drinks, sweets, boiled candies, and crispy chips as much as possible.

Consume food at room temperature

Dental caries that form during abscesses break away the enamel and expose the soft inner layers of the teeth. Food and drinks that are extremely hot or cold can affect the exposed soft parts of the teeth, leading to pain. Ensure that food is always brought to room temperature before you eat it.

Exercise and eat a balanced diet

Excess body weight can put pressure on already weak joints and bones in XLH patients. A balanced diet that includes all essential nutrients combined with light to moderate exercise is required to stay fit and prevent obesity. Before starting any exercise, make sure to consult a physiotherapist or an occupational therapist to ensure that you don’t do anything that can cause an injury.

 

Last updated: Feb. 21, 2020.

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XLH News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. 

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.

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