Hello Helene,
My father is Ashkenazi-with-G6PD whose father-son ancestry went back in Germany 
to mid 16thC (he escaped to England in 1936).  With his originally red (now 
grey where you can see any!) hair & green eyes, he was/is so untypical for 
G6PD, he wasn't diagnosed until his third near-fatal collapse 10 years ago.  
He’s now 95 and cheerfully doing crosswords in my living room as I write, which 
makes positive news for all of us G6PD'ers…
I have his G6PD (I’m now 0.0, down from 0.4 10 years ago) as does my younger 
son (0.6).  My mother is of Polish descent.  She doesn’t appear to be even a 
carrier, so It’s odd that I have it, but hey-ho our bodies don’t always follow 
the script set out by the medical textbooks.
All 3 of us additionally have serious allergies, including eczema, asthma and 
hay fever, and my father and I also go into anaphylactic shock with certain 
foods.  
So definitely parallels with your family situation!
Turning to your question:
If your daughter has the Mediterranean variant, which is pretty likely, she 
will be more sensitive than others worldwide with say the Asian one.
We are totally strict at cutting out ALL beans including soy (cutting out soy 
is such a pain, but worth it), and looking back I can see this strict regime 
has made a real difference to us all, especially my son, who used to get ill 
much more easily before he was diagnosed, he’d get tired and catch the latest 
thing going round at school.  
We have also now realised that peanuts - technically a bean not a fruit like 
other nuts - make me haemolyse too.  I know the G6PD jury is out on this, but 
I’ve just lost 4 weeks lying in bed or on the sofa after eating a major amount 
of peanut butter - my best friend brought some over from Holland where I grew 
up, and I was so excited to have this taste from my childhood I finished the 
pot in 3 days… 3 days later my urine was the colour of black tea before you add 
milk, I went an unattractive shade of lemon-yellow and flopped into bed for 4 
weeks, cancelling everything…  Definitely haemolysis.  
I would truly recommend that in the immediate future you are as strict as 
possible in avoiding all legumes including soy and peanuts.  I know it’s an 
absolute pain to read all the ingredients of everything every time, but it’s 
worth it.  Hopefully your daughter will work with you on this.  As she has 
always had her food sensitivities, I imagine you’ll be fine, like my children 
she’s used to the “check everything you eat” system of living already.  In time 
maybe you can relax some of the rules, but living well and having the energy to 
engage with life is more important than eating everything your friends can eat.
Tips:
We have had our own breadmaker for years, and it’s fabulous.  Most bread 
products in the UK contain either soy lecithin or milk (3 out of 4 of us are 
intolerant to cows milk but can do goat and sheep’s milk, cheeses, yoghurts 
etc), and some bakers even put broad bean or lupin flour in too - aargh.  
I’m very sympathetic about having to cut out hummus, falafel etc. I loved those 
in the past, and feel quite jealous to see my husband and elder son enjoying 
them, but feeling too tired to leave the sofa is no way to live either.  There 
are still lovely aubergine-based near-equivalents like babaganoush to enjoy 
(but no chickpeas!).  
Don’t even think about becoming full vegetarian.  This would leave your 
daughter with eggs and nuts only as her sources of protein, which are fine in 
their way, but girls need iron and the best way is via regular (not frequent, 
just regular) red meat rather than supplements.  
If you want to be in touch directly, let me know via the forum and I’ll phone 
you for a chat!  I’m sorry you have this situation, but confess to being rather 
excited to find someone else with so many parallels to myself!
Sandra (in the UK)
PS  I have cousins in Sde Warburg near Kfar Saba - any links?!


On 2 Feb 2018, at 19:25, Favism Mailing List <favismlist@g6pdml.org> wrote:

Hi, my name is Helene Warburg. We live in Israel and we have a 20 year old 
daughter who recently came out positive for missing the G6PD enzyme and came 
out that she has a level of 4.8 (on a scale where 7 to 14 is normal G6PD 
level). 

My father in law was tested and came out positive. He was from German descent, 
which is uncommon from what I understand. His level was 0.2

My American born mother in law we assume had it b/c my husband has G6PD. She is 
of Polish descent. 

My American born husband has G6PD and has a level of 0.4 My sister in law also 
has it - her level is 0.7.

My niece has it and my niece's son has it. We are having the rest of the family 
tested now. 

The reason we even tested for this - is b/c my daughter had a VERY bad case of 
pneumonia about 2 1/2 years ago. She was hospitalized for 9 days. She went down 
from 43 kilos (94.6 lbs) to 38 kilos (83.6 lbs). She is 5'3" and it was 
frightening. She was extremely weak. Prior to this bout of pneumonia she was 
experiencing heart palpitations and and nausea for years - I always attributed 
it to the assumption that she had food sensitivities. As a baby, we assumed she 
was "allergic"/ sensitive to soy, milk products, gluten and many other foods. 

Very recently she became very sick again with a bad virus  - then, while in a 
weakened state, she suffered from 3 impacted wisdom teeth, she became very weak 
and went down to 38 kilos again. It was just then, that I realized that maybe 
we should test her for G6PD., which we did and her levels showed at 4.8. 
 
We live in Israel and the past year she ate edamame beans almost every single 
day as part of her daily diet. She also eats a lot of falafel and humous.  She 
was using soy based nutritional supplements "like Easy Drink"  to try and help 
her gain weight and become healthier. 

About 2 months ago when we discovered the G6PD she stopped eating soy, edamame 
beans, all beans and lentils, red wine, stopped using henna, string beans, 
green teas etc...  She has gained back 4 kilos and is feeling better but still 
underweight. She ALSO has stopped smoking cigarettes (which contains 
Naphtholene, I assume) and all Ibuprofens which she used to take monthly when 
she got her monthly cycle.

My question is - does she REALLY have to avoid ALL of those foods that I just 
mentioned above? Are there OTHER foods that she should avoid besides these 
things I mentioned. 

I would REALLY appreciate your input as I really do not know where to turn. My 
doctor does not know that much about G6PD and he sent us to a dietician who 
just told us to avoid fava beans and aspirin. 

Thank you so much,
Helene Warburg


 
Mrs. Hadassah Warburg
Ner Leelef Women, Program Coordinator
053-724-4627
718-253-4579
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