Ebeneezer

[Ebeneezer]

Hi, I am interested in diet suggestions and recommendations for those having weekly venesection. Many thanks

[isi123]

Hi Ebenezer,

If you do not have any condition that generates hemochromatosis, such as liver problems, type 2 diabetes, etc. I would recommend a regular diet. It is important to drink plenty of fluids, try to avoid drinks with alcoholic content and minimize the consumption of red meat, shellfish (such as mussels), fortified flours and other foods of this type that are high in iron or added iron. With the venesections your iron level drops by having to replace your body's red cells, but you also lose other nutrients that you need.

[Autumn_Leaves in reply to isi123]

This is a tricky one because venesection can cause a significant drop in haemoglobin levels, though all other iron measurements will still be high, or higher than they should be, so it’s only temporary. But I have had mild symptoms of “anaemia” following venesection and TBH I’ve added in a few iron-ish foods. I don’t eat red meat at all and follow a plant based diet—and yes, I really do believe it keeps the overloading in check—but in that post venesection state with low haemoglobin I’m wondering whether the minimising of iron consumption matters. In truth, I don’t know. Weekly venesection is quite hard-going for some people. My sister developed B12 deficiency in this way, which is a slightly different issue. However, I’m with you on minimising these iron-containing foods as a maintenance approach. I eschew the fortified foods completely.

[isi123 in reply to Autumn_Leaves]

The important thing is to try to avoid them, it does not mean that you never eat red meat or other foods rich in iron. Reaching the maintenance point is a difficult road, I had to go down from 1200 and now I am between 30 and 75 with a venesection every 3/4 months. I think that once you reach the point of maintenance, your type of diet depends more on your physical condition, especially your liver than on the disease itself. In any case, I can say from my experience that with a controlled diet you get better control of the disease.

[Autumn_Leaves in reply to isi123]

Agree. So many variables. I was already following a plant based diet at diagnosis. I became vegetarian at a very young age in response to my dad who died of suspected liver cancer and almost certainly was a worst case scenario of haemochromatosis at a time before the genes were identified and before ultrasounds and MRI scanners. Even though I didn’t know it, I believe that I protected myself from a potentially worse outcome. I was never much of a drinker either, having seen what a serious liver disease can do to someone. The end stage was horrific and my dad suffered terribly. I knew I had to look after my liver health. I made these choices without any knowledge of haemochromatosis, and that I would be diagnosed with the condition later in life, as would my sister. Thankfully my liver looks all OK on the scans. We all find our own way, and I consider myself fortunate to have had the tests and and the scans, and the regular appointments, the venesections etc. There isn’t one right way. Whatever works for us is the right way, we find our own way eventually

[isi123 in reply to Autumn_Leaves]

Very similar to my case, my grandmother had cirrhosis and was diagnosed with hemochromatosis many years later (1st error), at that time my mother took tests and was diagnosed with hemochromatosis too. But they didn't do the tests on me until a few years later,when I turned 38 and already had 1200 ferritin (2nd error). In men, the disease is more aggressive and we are more likely to develop malignant tumors.

[Autumn_Leaves in reply to isi123]

I sometimes wonder about previous generations who went undiagnosed and died prematurely. My dad was too ill for a liver biopsy and scans weren’t available at that time. The genes hadn’t been identified yet either. It was always a mystery why my dad became ill, because he didn’t drink enough to have an alcohol-related illness, so there were a lot of unanswered questions. I was referred to haematology about 10 years before I was diagnosed and they never thought to test for haemochromatosis. When I was re-referred I woke up that day thinking “this will be a complete waste time”. However, I saw a very senior consultant who even rang me later in the day saying he wanted me to have genetic testing for haemochromatosis. As soon as I looked it up online it was like finding the missing piece of the jigsaw my dad’s illness. I wasn’t upset about my own diagnosis at all, if I’m honest.

[Pliskin in reply to Autumn_Leaves]

I was diagnosed in 2004 but was lucky enough to have been a blood donor for 25 yrs before that, without knowing I had the condition, which probably saved me a lot of damage. In respect of your original question both maternal and paternal grandparents came from Ireland( Celtic Curse) with both male sides dying early, not sure what of but a hard drinking culture probably didn’t do them any favours. I hope you are well. Regards Tim.

[Autumn_Leaves]

Just eat normally ie full size meals at regular times. The usual healthy food. Just about any dietary pattern can be healthy whether that’s vegan, vegetarian, pescatarian, flexitarian, or omnivorous. You do you. We all know what the unhealthy stuff is ie the highly processed foods, so pick the healthy options that you like and enjoy it!