I consider myself a good test subject on this, because I get phlebbed every three weeks and have been for 5 years now and I get my ferritin checked at every phleb. My ferritin maintains around 20, normally I only have red meat once a week, I rarely drink alcohol, I do not eat any fruit because I don't like them so I do take a one a day that has a little Vit C in it and No iron but I do not take it with meals. Other than that I eat a very normal diet and I feel great .

I am still in the de-iron process. I adhere to a strick diet. I follow the Hemochromatosis Cookbook diet and I will continue to do so until I reach maintenance stage.

I phlebed yesterday, 600 ml. Hematocrit is higher than two weeks ago which is a good thing, means iron is being removed from organs. Labs will tell next month how much Ferritin has dropped.

I think that during de-iron faze you should limit intake of anything that causes iron absorption. Once you reach maintenance and the high levels of iron are removed, you can pretty much eat what you want, but still watching red meat intake.

I agree with Sandye. I don't eat much red meat (basically because I don't like it), but I do drink red fine, but more-or-less avoid iron-enriched food (like most cereals). It seems that there is 'good' iron and 'bad' iron, and the iron in spinach is 'good' (i.e. the body doesn't absorb it) - which is great because I love spinach, especially the wild variety!

Good morning all, this topic is one of them subjects that I don't think anyone answer is the right one. I have done a lot of reading as I'm sure we all have and have the books as well, including the HH cookbook. I feel (just my opinion) that it really doesn't matter what you eat during de-ironing as we are getting rid of 250mgs of iron per phleb, no one is going to ingest that much iron in between phlebs. I am currently trying to balance my numbers for maintenance (I didn't realize it would be such a task) and think once in maintenance we need to be a little more diligent on what we are ingesting simply so we don't start loading at a quicker rate, hence more frequent phlebs. Like I stated earlier, I have no clue but only commenting on my own experience and still have a long way to go and so much more to learn, Rome wasn't built in a day, so they say:-)

As for the HH cookbook, I'm a little confused with some of their recommendations as some of them contradict prior research. As many have said "balance" and moderation are certainly the keys to keeping our chemistry stable. I mean.....I'm not about to go eat an entire cow or anything, but I am finding the reduction in red meat consumption, trying at times. As a hunter, I guess a few 4 footed friends will be spared! :-)

Have a great Easter everyone:-)

I agree that you should be prudent (as in no Vit C supplements, reduced red meat and alcohol intake). I also think, though, that life still has to be worth living, there's no point in it if you're going to remove all the pleasure.

As they used to say in the old London Music Halls 'A bit of what you fancy does you good!'

Have a great holiday all.

As in many things with HH, everyone's reactions will be a bit different. I too have not really watched my diet and my Dr does not really care what I eat. I still have an affinity for red wine and do not have any liver problems but as long as I am moderate in all things, I seem to do OK.
I try and follow some guidelines put out by the Canadian HH Society:
http://www.cdnhemochromatosis.ca/disorder/dietary.php
On this page there are also links to dietary suggestions.

I think its a normal reaction to restrict our diet from iron but after the shocking news of being diagnosed with hemochromatosis wears off so do the diet restrictions ,dont stress yourself out as I did because everything you have read here in this discussion is all based on our individual needs which all are seemingly the same .I am still in the maintance phase and its great discussions here that ease my fears of over doing it or the guilt of eating a good ole arbys 99 cent roast beef sandwich .

Just want to throw this at you and see what y'all think.

Last night, I had my first red meat (hamburger) in months. The boss took us all out. Not even ten minutes after eating, I had such a cramping pain around the liver. It was pretty intense and lasted about 30 minutes.

Any thoughts?

Maybe you put your body in shock ,like giving a kid an entire bag of candy and then they get a belly ache ,lol ,just a thought ,I really dont know just thought I would throw my two cents worth in . I am just laying around waiting for my next phelb wed. ,once again dont know if I can make it that long but for red tape purposes I am going to follow the doctors orders .

Ya, beats me as well Sandy...I get that feeling about a day after my phlebs...I can't make heads or tails out of it either. It is a significant discomfort though. Other than that did you enjoy the burger? I had beef short ribs the other night (I marinated them in tea overnight), they were very good but I've developed a mental guilt now every time I eat red meat, so I don't even know why I bother, lol! Hope you're feeing better:-)

I pay close attention to what I eat.

I eat red meat maybe 2x a month max, if that. I've cut cereals down to only those with less than 8% iron, and I don't eat that often. I look to see how much iron and vitamin C are in the foods I eat.

It seems if I eat foods that are high in iron, I feel worse. I feel better if I avoid those.

It could be because my saturation has been around 90%..I'm in the process of treatment and don't want my numbers to go up.