Awaiting official diagnosis, what do I eat??
Posted , 4 users are following.
I recently had routine bloods done which showed my iron and ferratin levels across the board drastically point towards haemochromatosis. My bloods a year ago we're completely normal, but my most recent panel had my GP really confused and worried. He's advised getting a repeat panel and genetic tests done in two months time, hoping that a second panel may show that the results were a once off but wants me to try to avoid iron fortified foods in the mean time as the levels were too high to take lightly.
I'm only 23 and a female so it seems odd that I'd be diagnosed so early but I do suffer from joint pains, easy bruising and fatigue.
What I'm really struggling with at the moment is what food should I eat/avoid. I'm finding trying to judge iron readings from fortified food hard and getting mixed information about what natural foods to avoid/have more of.
Any help would be much appreciated! I'll be looking for a dietician once I get a diagnosis but need some help to tie me over until then!
1 like, 9 replies
laura29196 Sherry101
Posted
Hi Sherry,
I'm in exactly the same position as you!!!...
Don't know where to go or where to turn with it ...
My GP also has high opinion that my bloods are the first sign of haemochromotosis .... I've just had my genetic blood test to check for the gene ....
Lets help each other
x
Sherry101 laura29196
Posted
I hope the testing goes ok for you!
I'm just a bit overwhelmed as the GP wants to wait another 8 weeks before more tests to give an accurate diagnosis, so I won't be referred to a dietician until after results come back!
If I cant get my head around it soon I may go back to ask about earlier testing as I'm afraid I'll end up making myself deficient in something else!
laura29196 Sherry101
Posted
I had to wait 6 weeks to get to this stage .... it can be a worrying time, I'm still anxious now about the results, I think as soon as I have a 'name' for it I'll be able to get my head round it better, I was told I had to wait as that's how long it takes for iron to show any significant changes.
The tiredness is destroying my happiness at present.
Stay Strong Huni
haircrazydaisy Sherry101
Posted
Hi Sherry & Laura. When I was first diagnosed, I felt really overwhelmed by the fact that food combinations I'd previously seen as healthy were now potentially poisonous. I became a bit obsessed with the thought of iron being poisonous.
Almost two years on, I am now de-ironed, in maintenance & comfortable with food choices. I initially bought the haemachromatosis cook book which was useful for information but I don't use the recipes. My rule of thumb is to only eat organic baked products or breakfast cereals as these are not fortified with iron. Anything with flour now seems to be fortified unless it is organic. If I eat meat products, I make sure that I also have a calcium-rich food (a dairy-based sauce/dollop of yoghurt/cream). If I eat a vegetarian meal, I also have a cup of tea. I drink LOTS of tea through the day - decaf but well brewed so that there is plenty of tannin. I eat quite a lot of fish, poultry & vegetarian meals. I rarely drink alcohol :-( It seems to be working for me - it's fairly basic but it's the only way I could get my head around all of the heme/non-heme stuff!
sheryl37154 Sherry101
Posted
Adding to haircrazydaisy, also avoid having vit C and juices with meals. Between meals ok, but vit C promotes the uptake of iron, while tea, coffee, calcium foods reduces the uptake of iron. Calcium in particular.
Most iron fortified packaged foods are marked "iron added" or something like that. I avoid wheat and grains anyway, so it is interesting what haircrazydaisy says about non organic flour.
Otherwise I eat all fresh meat and vegetables (lots of greens too) with the exception of liver, and I have read that clams have a huge iron level, more than anything else. No clams where I live, so no worries about them.
Make sure your multi vitamin supplements do not contain iron as well.
You are lucky to be diagnosed (if that is the case) so early before any damage has been done. Regular venesections will keep you healthy.
Sherry101
Posted
Thanks so much Haircrazydaisy and sheryl37154! All of that is really helpful! Do you know if companies have to state if something is fortified? How do you know if something is safe if there's no iron value?
Thanks again, everything so far has made things that bit clearer!!
haircrazydaisy Sherry101
Posted
Yes, as Sheryl says, avoid oysters - I suppose any uncooked sea food, too. Vitamin C helps iron to absorb - I spent years taking an iron supplement in orange juice because I thought the fatigue was caused by low iron - ironic (ha,ha!). I never eat liver - luckily I can't bear the stuff so it isn't a hardship! I think most products containing unorganic flour are now fortified but in UK these are more often labelled. Sauces are often thickened with flour but I'm not sure if producers are only made to label if above a certain amount is added. I just stick with organic if in doubt & make my own sauces anyway.
As for fatigue & many other symptoms, they definitely improved after venessection. A word of caution - avoid taking contraception that stops your periods - they seem miraculous but are bad news as you need to get rid of that blood each month.
Like Sheryl, I actually avoid bread. I also find I feel better if I don't have too many carbs as digesting them seems to drain my energy. I don't deny myself if I get a craving for some home-made cake but generally my only carbs consist of oats/oat bran/ flax for breakfast. Sheryl actually gave me most of my information in the first instance - a real mine of information! Thanks, Sheryl.
laura29196 Sherry101
Posted
All of the info!!!!!... is so helpful!!!! I feel a huge sense of relief, I've been so worried in what the future may hold with it all.
The diet info is really interesting, I'll be definitely looking into all of that further.
My biggest problem so far is the fatigue, does this subside at all?
THANK YOU!!! Again for all the above !!!!
Sherry101
Posted
So I've had an interesting couple of months since the initial blood tests!
I've moved to the UK, but the GP surgery won't run the genetic testing or an in-depth iron study within the community. It can only be ran through a consultants order. (I'm presuming as the GP in Ireland is private practice they can run anything and everything they want...)
My practice nurse sent me for repeat ferritin levels (my ferritin was within range last time but she couldn't authorise transferrin saturation) and they've after coming back 'grossly raised'. Now just need to wait for an appointment with the GP to try get a referral so I can get genetic testing and get the ball going and get to a dietician. I have life threatening food allergies too so the whole diet thing has been hard to balance!