Breathing Deeply: My Life With Cystic Fibrosis

Recently there has been some back and forth discussion on some CF blogs regarding the benefits of glyconutrients. Although some people feel very strongly about this "natural" approach to treating CF by means of nutritional supplements, I for one am not convinced that this is a beneficial route to take. Certainly there are benefits of supplementing the diet, especially for those of us who have pancreatic insufficiency, but based on what I've read, I'm not willing to fill my cupboards with more pills or supplements on the off-chance that they might work.

Here are what some highly reputable websites have to say about glyconutrients:

The Mayo Clinic

• Although animal studies suggest possible health benefits from glyconutrient supplementation, there is very little research to support any of these health claims in humans. This makes it difficult to assess the potential risks and benefits of glyconutritional supplements. Also, because supplements aren't regulated by the Food and Drug Administration, they haven't been rigorously tested or approved. As a result, the long-term safety of these products isn't known.

Cystic Fibrosis Foundation (US)

• Whereas these products may have health benefits for people with CF, there is very little scientific evidence to corroborate these claims. In addition, there is no data as to the safety of these supplements when taken in high doses for a period of time.

• We encourage everyone with CF to consult with their CF care center physician before introducing any new treatment, medication or dietary supplement into their regimen or before removing a prescribed therapy from their treatment plan.

Most of what I have read regarding glyconutrients is in the context of treating children with CF, and possibly those who are too young to eat properly to ingest the recommended daily allowances of vitamins and minerals. As an adult I make sure to eat a well balanced diet, one that provides me with as many of the biochemicals my body needs to function properly.

Until more research is available, the safety and long term benefits are assessed and this supplementation approach is endorsed by the CF Foundation, I'm going to "just say no" to the glyconutrient regime and stick with the vitamin supplements my doctor recommends. I trust his evaluation far more than that of a company that is just looking to make a buck.