Nutrition for Thalassemia Q&A with Dr. Ellen Fung
October 31, 2014 – CAF periodically receives questions from patients on a wide range of topics related to thalassemia and its treatment, including diet and nutrition. We have shared a few of these questions with Ellen Fung, PhD, RD, of Children’s Hospital Oakland Research Institute. Dr. Fung has advanced training in nutrition and a long-standing interest in the impact of nutrition on children with chronic disease, including thalassemia.
CAF: Is getting 10 minutes a day of sun (without sunscreen) and eating a healthy diet of greens, grains & fruit enough to ensure sufficient vitamin D for a person with thalassemia?
Dr. Ellen Fung
Dr. Fung: This sounds like a good amount; however, it really will depend on where this patient lives (latitude), how much skin is uncovered, and the skin tone (melanin), to determine how much vitamin D will be synthesized. It is best if the patient has a baseline vitamin D lab checked (serum 25OH vitamin D lab level) at some point, preferably in the spring as that would be the time when their circulating vitamin D level would be lowest (after winter months). Then they will know what their usual lowest level is– and will know if they need to supplement from there.
Does consuming superfoods like coconut, flax, etc., which are rich in nutrients, have an impact in people with thalassemia? If so, which ones should we consume?
I am typically not an advocate of super foods… I think all foods are Super :). However, there are some nutrients that patients with thalassemia likely need in greater amounts, such as antioxidants, vitamin D and zinc. Some foods are rich sources of these nutrients but that should not preclude patients from eating a varied balanced diet.
If I am taking a supplement and want someone to cross-verify the contents, is there a lab I can send the supplement for testing?
A person might want to investigate something close to home, but one lab in San Francisco that I can recommend is Anresco (www.anresco.com). Though they appear very commercial on the website, they will do individual analysis for a price and are an excellent lab. The best contact is Mary Pat Kelly, and the patient would be asking for a vitamin analysis.
How much zinc supplementation would you recommend for a thal major adult?
If the patient is not currently taking an oral chelator, then I would recommend 15 mg/day. If the patient is taking an oral chelator, I would consider 25 mg/day, preferably not at the same time as the oral chelator medication.
Most children’s food has high iron. Should we avoid this? How much precaution should be taken?
If the child with thalassemia is transfused, and currently on chelation medication, we do not recommend avoiding foods that are high in iron. This limits the diet severely, especially from foods that are fortified with other important vitamins and minerals (e.g., some breakfast cereals, granola bars, etc.). It is well documented that the amount of iron that comes from food (and is absorbed from food) is exponentially less than the amount of iron that the child is getting from his/her transfusion. It is very important that he/she is diligent with his/her chelation. However, that being said, if the child is non-transfused, then avoiding foods high in iron is VERY important to the overall care of the child.
For thalassemia, are there recommended dietary guidelines for different ages? Are there recommended vitamin guidelines (inc. dosage) for different ages?
We are going to provide some specifics on the Cooley’ s Anemia Foundation website very soon. For now, best to get information about general nutrition guidelines and eating a varied/nutrient dense diet at:
http://www.choosemyplate.gov/dietary-guidelines.html
We know that zinc deficiency is common in thalassemia. Are there are other particular vitamins or nutrients that are frequently lacking in patients with thalassemia? In general, is supplementation required to address these deficiencies (or can dietary changes alone usually address them)?
Yes, we see a lot of vitamin D deficiency, which can be handled with either a regular/daily vitamin D supplement (1000 IU/d), or a high dose infrequent vitamin D supplement (50,000 IU dose every 3-4 weeks at time of transfusion). It is challenging to get this level of vitamin D from either diet or sun exposure alone.
Other vitamins/minerals can also be limiting (Cu, selenium, vitamin C, other antioxidants, etc.), but can usually be provided through a multivitamin/mineral supplement without iron.
Should parents of young children with thalassemia be giving them supplements to prevent deficiencies in certain areas, and if so, which ones and at which ages? Also, any hints on how to deal with young children that don’t like taking pills – can supplements be given in liquid form?
I think it is best for parents to meet with a nutritionist at their center if they have the opportunity to do so first.
Take advantage of your nutritionist/dietitian; they are a fabulous resource. They will assess your child’s diet and give you specific feedback as to what would be most helpful for him/her. We are going to be providing specific guidelines on the Cooley’s Anemia Foundation website very soon. Until then, best to eat a varied diet. If you are particularly concerned about your child’s intake and he/she is not eating a varied diet (picky/food intolerances/etc.) a chewable multivitamin without iron is your best bet.
The liquid forms (polivisol etc.) often are not as complete as the chewable forms for kids.