Thank you 

I found that really interesting and helpful. 

Kind regards 

Helen (nz)

Sent from my iPhone

> On 7/02/2018, at 07:32, Favism Mailing List <favismlist@g6pdml.org> wrote:
> 
> Hi Hadassah,
> I think that the problem you are having is the problem most of us have - it 
> is hard to get good, straight answers. I am in the US and I find most doctors 
> have only the most basic knowledge of G6PD and many believe it is unnecessary 
> to avoid all legumes and that only fava beans are a problem.  I think they 
> are wrong and am more careful than that, although I have become more and more 
> convinced over the years that the legumes are an issue when you eat a lot and 
> there is build up.  Recently someone posted a study on this cite that showed 
> that other legumes like chick peas had caused hemolysis in some people.  My 7 
> year old  son was diagnosed at birth with G6PD, and because I didn't know it 
> was in my family, we spent a lot of time doing re-tests and were convinced it 
> was an error. As it turns out, I too am deficient, and my dad and my son both 
> have very low levels -- under 1.0. My other two sons are not G6PD deficient.  
> My dad had lived his whole life with no apparent issues other than feeling 
> sick from anti-malarial drugs which he assumed was normal.  When my son was a 
> newborn and diagnosed I went crazy researching G6PD and basically got the 
> advice to keep him away from all legumes and contraindicated meds just to be 
> safe since he was so young, and to not eat any of that  myself since I was 
> nursing (at that time I didn't yet know that I too had G6PD). Meanwhile, my 
> parents were starting a vegan diet and were eating a lot of legumes, and when 
> testing showed my dad had G6PD he was not concerned about the legumes since 
> he had been unaffected by G6PD for 65+ years.  To make a long story short, my 
> completely healthy dad started have heart and health issues after being vegan 
> and eating a lot of legumes for a couple of months.  He ended up in the 
> hospital. He did not have typical hemolysis, but was weak and thought he was 
> having a heart attack.  The doctor's did not think it had anything to do with 
> G6PD, but my mom and I immediately wondered and my dad completely stopped 
> eating legumes.  Within a couple of weeks he was back to himself and his 
> tests were normal.  Ever since then he tries his best to avoid soy and 
> legumes and he has been healthy.  That event scared me and I am really 
> careful with my son.  He has had a little bit here and there of black beans 
> or a little soy, but for the most part has none.  As I mentioned above, over 
> the 7 years I have been dealing with G6PD, I have become convinced that with 
> most legumes (not Fava beans which we avoid 100%) the problem comes with 
> build up, and so if I keep my son off of all legumes 99% of the time, an 
> occasional slip up or eating something with soy at a friends house or 
> allowing him a little bit of hummus at an event where it is being served will 
> have no effect. That has been my experience, and we have been very lucky with 
> no G6PD complications. Just wanted to share my experience.... hope it helps!
> Jen Weil
> 
> On Tuesday, February 6, 2018, 12:35:33 PM EST, Favism Mailing List 
> <favismlist@g6pdml.org> wrote:
> 
> 
> Hello Hadassah,
> 
> My advice for you that please please talk to a hematologist doctor about what 
> kind of food or medicine you need to stop. The internet has a lot of wrong 
> information. I live in the USA but I am originally from Middle East. I am 32 
> years old and for 30 years I didn’t eat beans because my family told me if 
> you eat it you will die. Last year I went to see a hematologist doctor and he 
> did a blood test and he told me yes I have G6PD and he told me that the main 
> problem with G6PDD patients is NSAID including aspirin, Sulfa drugs, and 
> quinolone drugs and no Tylenol and no fava beans. The fava beans is the BAD 
> beans.
> 
> In the USA most of the doctors don't know what G6PDD is so before I did my 
> gallbladder surgery  I went to see the hematologist doctor and I told him to 
> write a letter to tell the surgeon and the anesthesiologist what drugs they 
> can use for me.
> 
> Please let me know if you have any questions.
> 
>  Thank you,
> Abbas
> 
> 
> 
> On Mon, Feb 5, 2018 at 5:00 AM, <favismlist-requ...@g6pdml.org> wrote:
> Send Favismlist mailing list submissions to
>         favismlist@g6pdml.org
> 
> To subscribe or unsubscribe via the World Wide Web, visit
>         http://lists.g6pdml.org/ mailman/listinfo/favismlist
> or, via email, send a message with subject or body 'help' to
>         favismlist-requ...@g6pdml.org
> 
> You can reach the person managing the list at
>         favismlist-ow...@g6pdml.org
> 
> When replying, please edit your Subject line so it is more specific
> than "Re: Contents of Favismlist digest..."
> 
> 
> Today's Topics:
> 
>    1. Re: G6pd question - response to Sandra (Favism Mailing List)
> 
> 
> ------------------------------ ------------------------------ ----------
> 
> Message: 1
> Date: Mon, 5 Feb 2018 05:03:00 +0200
> From: Favism Mailing List <favismlist@g6pdml.org>
> To: favismlist@g6pdml.org
> Subject: Re: [Favismlist] G6pd question - response to Sandra
> Message-ID:
>         <CAMbOu6wuufja=VLDJ8_0Gd6=19vL sNTD+iEtYEhi69rYrhfFjA@mail. gmail.com>
> Content-Type: text/plain; charset="utf-8"
> 
> Hello Sandra. Thank you so much for your very informative email. I was
> soooo very happy to hear back from somebody who can "relate" to our
> situation and who seems knowledgable in the subject.
> 
> I want to read your letter again. I still have some questions for you that
> might give me more clarity.
> 
> How does the hemolytic anemia "work"? Is it a build up that is triggered by
> foods that eventually cause a certain level of weakness in the body? My
> husband doesn't seem to be affected at all EXCEPT that he has had low RBC,
> WBC, low hemaglobin etc.. for 15 years now. He is pretty weak and he does
> have stomach issues, but I always attributed that to IBS and an uptight
> kind of personality.
> 
> I would also like to know if you are a G6PD "expert"? I assume that you
> have learned tremendous amounts over the years.
> 
> Does ANYONE who is missing the enzyme supposed to avoid all legumes etc...?
> Even though they went through their whole life seemingly without any
> symptoms?
> 
> What ARE the symptoms? How does one know that he might be experiencing
> hemolytic anemia?
> 
> How bad is nephthalene for my daughter? I feel like this is a great excuse
> for her to stop smoking cigarettes!
> 
> I would be happy to speak with you on the phone! DO you have whats app? My
> whats app # is +972-53-724-4627. How does this forum work? That is very
> cool that you have relatives in Sde Warburg. All the Warburgs are
> supposedly from one big german family tree.
> 
> Thank you so much for your help
> 
> Mrs. Hadassah Warburg
> 
> Ner Leelef Women, Program Coordinator
> 
> 053-724-4627
> 
> 718-253-4579
> 
> On Sat, Feb 3, 2018 at 3:31 PM, Favism Mailing List <favismlist@g6pdml.org>
> wrote:
> 
> > 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 <(718)%20253-4579>
> > ______________________________ _________________
> > Favismlist mailing list
> > Favismlist@g6pdml.org
> > To unsubscribe:
> > Send a message to favismlist-requ...@g6pdml.org and enter the word
> > "unsubscribe" (without the quotes) in the body of the message.
> > To view the archives:
> > 1. Get your password by sending a message to favismlist-requ...@g6pdml.org
> > and enter the word "password" (without the quotes) in the body of the
> > message.
> > 2. Go to lists.g6pdml.org/mailman/ private/favismlist.
> >
> >
> > ______________________________ _________________
> > Favismlist mailing list
> > Favismlist@g6pdml.org
> > To unsubscribe:
> > Send a message to favismlist-requ...@g6pdml.org and enter the word
> > "unsubscribe" (without the quotes) in the body of the message.
> > To view the archives:
> > 1. Get your password by sending a message to favismlist-requ...@g6pdml.org
> > and enter the word "password" (without the quotes) in the body of the
> > message.
> > 2. Go to lists.g6pdml.org/mailman/ private/favismlist.
> >
> >
> -------------- next part --------------
> An HTML attachment was scrubbed...
> URL: <http://lists.g6pdml.org/ mailman/private/favismlist/ 
> attachments/20180205/2a57ebc7/ attachment-0001.html>
> 
> ------------------------------
> 
> ______________________________ _________________
> Favismlist mailing list
> Favismlist@g6pdml.org
> To unsubscribe:
> Send a message to favismlist-requ...@g6pdml.org and enter the word 
> "unsubscribe" (without the quotes) in the body of the message.
> To view the archives:
> 1. Get your password by sending a message to favismlist-requ...@g6pdml.org 
> and enter the word "password" (without the quotes) in the body of the message.
> 2. Go to lists.g6pdml.org/mailman/ private/favismlist.
> 
> 
> End of Favismlist Digest, Vol 42, Issue 3
> ****************************** ***********
> 
> _______________________________________________
> Favismlist mailing list
> Favismlist@g6pdml.org
> To unsubscribe:
> Send a message to favismlist-requ...@g6pdml.org and enter the word 
> "unsubscribe" (without the quotes) in the body of the message.
> To view the archives:
> 1. Get your password by sending a message to favismlist-requ...@g6pdml.org 
> and enter the word "password" (without the quotes) in the body of the message.
> 2. Go to lists.g6pdml.org/mailman/private/favismlist.
> _______________________________________________
> Favismlist mailing list
> Favismlist@g6pdml.org
> To unsubscribe:
> Send a message to favismlist-requ...@g6pdml.org and enter the word 
> "unsubscribe" (without the quotes) in the body of the message.
> To view the archives:
> 1. Get your password by sending a message to favismlist-requ...@g6pdml.org 
> and enter the word "password" (without the quotes) in the body of the message.
> 2. Go to lists.g6pdml.org/mailman/private/favismlist.
_______________________________________________
Favismlist mailing list
Favismlist@g6pdml.org
To unsubscribe:
Send a message to favismlist-requ...@g6pdml.org and enter the word 
"unsubscribe" (without the quotes) in the body of the message.
To view the archives:
1. Get your password by sending a message to favismlist-requ...@g6pdml.org and 
enter the word "password" (without the quotes) in the body of the message.
2. Go to lists.g6pdml.org/mailman/private/favismlist.

Reply via email to