Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
I have been getting phlebs for a few months and am really having a difficult time. My ferretin is still 500 (I am getting it tested again today) and want to add serious diet changes to help. I bought he cookbook and many other books. All are helpful but complicated. Has someone figured out a simple daily diet? For example, if I eat a tv dinner that has 4 to 8% iron, is that good or bad for a meal? And if I eat one egg, a glass of juice with flaxseeds a couple of hours later, would that result in an almost zero iron? I am ready to go extreme if needed until I lower my counts; I am constantly exhausted, had to give me most things but realize it must be done (the phlebs) How many % of iron is considered acceptable daily? I drink tea with meals, avoid most meats, no alcohol. I know it is asking a lot but I have been trying to study the nutrition thing, thinking I could come up with a single sheet of tips and sample menus that I would share with the group but I feel stump from the very beginning. Have not found anything in that order on websites either. Thanks for any help, it would be interesting to do sample menus and compile it into an info sheet... Langlois
Looks like you are on the right track, so I will just add my thoughts. I'm sorry of this rambles a bit. I am not an expert, I am new to this also. My understanding is basically avoid red, trim excess fat from from poultry and pork and eats lots of vegetables. Iron from meat in the form of heme iron gets absorbed easily. non-heme iron in vegetables does not get absorbed easily unless eaten with meat (mainly red meat). Avoid too much vitamin C, mainly avoid anything fortified with it or vitamin pills with more than 200mg daily. Take a multivitamin that is low in C and iron free. Avoid alcohol completely.
Don't drive yourself crazy trying to ingest no iron, won't happen and wouldn't be healthy to try. Worry more about nutritional values. Keep in mind no matter what you eat diet alone will not reduce ferritin levels, only phlebotomies will do that. Tea and coffee an hour or so *before* a meal wouldn't hurt. IIRC calcium pills would also help.
JHMO, IANAD
This is a great web-site with daily allowances for iron. It also lists foods high and low in iron.
Vitamin C is the biggie I watch for. I love citrus fruit. If I eat an orange, I eat only the orange and wait two hours before I eat anything else.
Also, cereal is an easy meal/snack. But very high in fortified iron. I stay away from all cereal.
I also take calcium pills daily.
Stay away from red meats and organs. I love liver - any kind. That's been the hardest for me to give up. Never have been much of a red meat eater other than liver or hearts.
Nicotine enhances iron absorption, I have yet to quit smoking.
Try not to be too hard on yourself. You are doing a terrific job!
Everything in moderation, as they say, is a good tip for people like us. I was de-ironed a long time ago now and it was tough, no doubt about it, BUT.....It does get easier and you WILL begin to gain back your stamina and the Ferritin levels will drop, you will be amazed. Remember, some of your energies are going into fretting about your diet so dump the worry and just let your common sense attitude rule. .
My GF is picky about her food but she loves everything that I have made so far. It is available on line for under $20.00
Something to consider.
Thanks for your advice. This forum is fantastic and is answering loads of my questions - so glad I found you all.