Anybody Have Experience With Low Carnitine Levels?

[samcarter]

Long story short: when my third son was born, they did the typical newborn screenings, with a new test added recently in our state: Carnitine levels. Apparently a low level of carnitine can indicate an inborn error of metabolism. My son's level was extremely low, and immediately the assumption was that he had a metabolic disorder.

However, then they tested my carnitine levels, because this is a genetic thing and my brother died at age 30 from unknown causes; they thought it might be a metabolic issue. My levels were as low as you can get. The doctor said he'd never seen anybody 'walking around' with such low levels.

They tested me for the carnitine transport error, and I didn't have it. They had no explanation for my low carnitine levels. I ended up going to another doctor, a pedatrician with expertise in metabolic disorders. She reviewed my history and said it was possible that my carnitine levels were so low because, prior to my third pregnancy, I had been eating a vegan diet. She said that my son's levels were most likely low because I had no carnitine in my own system (babies in utero get carnitine from their mothers, after birth they metabolize it or absorb it on their own).

My son is still on a low dose of carnitine supplement. He was tested and had a low normal, then got tested again after an illness, and his levels had dipped down (during illness, when children don't eat, they use carnitine to metabolize stored fats, so I wasn't surprised that he was low on carnitine). I went gluten free last August, and my levels have been normal; now I've been doing some reading and finding that in the few studies that have been done regarding serum carnitine levels and celiac disease, patients with celiac--especially children---have low serum carnitine.

I tested negative for celiac with an EMA test, but have had extremely positive response to the gluten free diet. Is it possible that celiac was causing my carnitine deficiency?

[kaplan1975]

I think there is definately a correlation and you may be at the least gluten intolerant. I think my fate could have been the same as your borther as I was very sick for a long time. A gluten free diet put me on the track to recovery and I recently started supplementing with Carnitine with great success.

Ultimately the lack of vitamins and nutrients can lead to so many complications...I feel that my cardiovascular health was similar to that of a 70 year old (I am 34). Excercise, gluten free diet, and supplementation have imprved this greatly. I take a B12 (sublingual), Magnesium, Carnitine (with Alpha Lipoic Acid), and feel a great energy and digestive boost with Acai Berry supplement.