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BTD Forums  /  Testimonials  /  Hemochromatosis
Posted by: FrostedCupCakes, Sunday, December 12, 2010, 11:00am
Last year I was diagnosed with hemochromatosis, a genetic disorder that my body adsorbs too much iron (ferritin). I had to go and get weekly blood draws to reduce the amount of iron from my system. I was told I would have to do this for the rest of my life, (not fun or pleasant) until I came across a book called Eat For Your Type. I am A+ blood type and followed the A blood type diet. My iron levels actually normalized from this diet and it has been a year since my last blood draw. My hematologist  cannot understand how I am keeping my iron levels down with out blood draws and is skeptical that a diet can control this. I just keep telling him you are what you eat! I think any one (including doctors) who shoots this diet down should try it before they have an opinion. It is also saving me big bucks because I have a very deductible health insurance plan.
I replaced dairy with soy, I still eat eggs once or twice a week. My main source of protein is chicken or turkey which I eat twice a day. I make my own breads with brown rice flour, oat flour, salt, yeast, ground up prunes, olive oil and water. The bread does not rise much, but is very tasty, almost molasses like flavor.
I avoid wheat, corn, corn starches, corn syrups, night shade fruits and starches,  table sugars - white - brown - , molasses and transfats.
I eat pinaple, kiwi, carrots, grapfruit, and broccoli daily and make them the largest portion size on the dinner plate. :D
Posted by: Lin, Sunday, December 12, 2010, 1:16pm; Reply: 1
Interesting post and timely.  Several years back I found out I carry one of the genes for this and at that time my iron level was not high enough for me to need to draw blood but I was told to monitor it.  I've been largely following the blood type diet and my iron has dropped also.  I kept wondering why as I was told it would go higher after menopause which I have since gone through but the reverse has happened.  So perhaps it is the Blood type diet.  
Posted by: Lin, Sunday, December 12, 2010, 1:22pm; Reply: 2
I realise that we have a similar diet.
I have to admit I was never a bit red meat eater and was more a chicken and fish person. I found out I was gluten/dairy intolerant in 2003, plus a bunch of other food sensitivities and dropped that them from my diet.

What made you stop eating wheat, corn, corn starches, corn syrups, night shade fruits and starches,  table sugars - white - brown - , molasses and transfats.
Posted by: mikeo, Sunday, December 12, 2010, 1:27pm; Reply: 3
the A diet is a quasi vegetarian diet and vegetarians have trouble obtaining iron from food so it would make sence your iron levels went down. Iron in blood is reduced by oxylates in green vegetables, coffee, green tea, phytates in whole grains and surprisingly soy protein...pretty much sounds like the A diet
Posted by: Goldie, Sunday, December 12, 2010, 1:37pm; Reply: 4
Quoted Text
Last year I was diagnosed with hemochromatosis, a genetic disorder that my body adsorbs too much iron (ferritin). I had to go and get weekly blood draws to reduce the amount of iron from my system. I was told I would have to do this for the rest of my life, (not fun or pleasant) until I came across a book called Eat For Your Type. I am A+ blood type and followed the A blood type diet. My iron levels actually normalized from this diet and it has been a year since my last blood draw. My hematologist  cannot understand how I am keeping my iron levels down with out blood draws and is skeptical that a diet can control this. I just keep telling him you are what you eat! I think any one (including doctors) who shoots this diet down should try it before they have an opinion. It is also saving me big bucks because I have a very deductible health insurance plan.

I replaced dairy with soy, I still eat eggs once or twice a week. My main source of protein is chicken or turkey which I eat twice a day. I make my own breads with brown rice flour, oat flour, salt, yeast, ground up prunes, olive oil and water. The bread does not rise much, but is very tasty, almost molasses like flavor.
I avoid wheat, corn, corn starches, corn syrups, night shade fruits and starches,  table sugars - white - brown - , molasses and transfats.

I eat pinaple, kiwi, carrots, grapfruit, and broccoli daily and make them the largest portion size on the dinner plate.


Sometimes we are looking for miracles.. here is one for sure.. who would have thought??

with all that talk of blood I guess you are O// did you do the secretor test?  What diet are you following? which book did you start with ? Welcome!!!!!

I am blown away!! all the best to you and so many THAKS for sharing your story..

Here we see so many such stories, but yours is blowing me away.. wheeeeee.. It's one for Lola to put on 'Garlands for DrD'..... by the way Lola those postings are becoming fab! thanks Lol!!!..
Posted by: Lin, Sunday, December 12, 2010, 1:37pm; Reply: 5
So oxylates can be helpful. I did also start drinking green tea few years ago, and past 8 months switched pretty  much to whole grains.  So maybe that is what is helping.  
thanks
Posted by: balletomane, Sunday, December 12, 2010, 2:13pm; Reply: 6
FrostedCupCakes, what a wonderful testimonial you have given! I love hearing this kind of stories. Yours is super encouraging! Keep up the good work!
Posted by: RedLilac, Sunday, December 12, 2010, 3:18pm; Reply: 7
You might consider donating blood once in a while.  It will lower your iron levels and help someone else.
Posted by: Lola, Sunday, December 12, 2010, 5:02pm; Reply: 8
kick your guidelines up a notch with swami!

find out your secretor status, subtype of A and MN status if interested, by getting a serotyping panel done


More information on SWAMI diets can be found at:

http://www.dadamo.com/clinic/swamigenotype.htm
http://www.dadamo.com/program_advanced_subtypes.htm
Read about the non secretor issue
http://www.dadamo.com/knowbase/newbie/a.htm

you have come to the right place!
Posted by: Lola, Sunday, December 12, 2010, 5:07pm; Reply: 9
more on Hemochromatosis  
you are not alone!
http://www.google.com/custom?hl=en&domains=dadamo.com&sitesearch=dadamo.com&&sa=X&ei=MgEFTZaxK4X4sAPzubDhDQ&ved=0CAcQBSgA&q=Hemochromatosis&spell=1
Posted by: FrostedCupCakes, Monday, December 13, 2010, 8:42am; Reply: 10
Quoted from Lin
I realise that we have a similar diet.
I have to admit I was never a bit red meat eater and was more a chicken and fish person. I found out I was gluten/dairy intolerant in 2003, plus a bunch of other food sensitivities and dropped that them from my diet.

What made you stop eating wheat, corn, corn starches, corn syrups, night shade fruits and starches,  table sugars - white - brown - , molasses and transfats.


I stopped eating wheat because it is highly enriched with iron. I also found corn and corn products could be higher in iron and it was also raising my blood suger causing it to spike then plumet, making me gain stomach fat. Table sugar gives me a similar fattening effect, but I eat fruit instead it has a thinning effect on me, might be from the pectin? Transfats seems to fatten me up and raise my cholesterol so I stay away from it also. I find by eating peanuts and olive oil daily, it cut my cholesterol levels in half and stomach slims down (size 36 to size 31). It seems if you eat the right stuff you can shrink stomach mass with out changing body weight. I do not count calories I just eat until I am full, 5 to 6 meals a day.
Posted by: Possum, Monday, December 13, 2010, 8:54am; Reply: 11
Fantastic testimony & welcome!! Must tell my boss whose husband has hemochromatosis...
Posted by: christaalyssaA+, Monday, December 13, 2010, 8:59am; Reply: 12
Quoted from Possum
Fantastic testimony & welcome!! Must tell my boss whose husband has hemochromatosis...


lol Like he'll listen! haha Worth a try though. When things make sense and are that simple most people just don't do it because it's too easy... or in their minds... too hard. Good luck! *crosses her fingers*
Posted by: FrostedCupCakes, Monday, December 13, 2010, 9:01am; Reply: 13
Quoted from RedLilac
You might consider donating blood once in a while.  It will lower your iron levels and help someone else.


People with Hemochromatosis are not allowed to give blood in Massachusetts I guess there are laws on the books that make hospital liable for giving tainted blood?
Posted by: Possum, Monday, December 13, 2010, 9:09am; Reply: 14
Quoted from christaalyssaA+
lol Like he'll listen! haha Worth a try though. When things make sense and are that simple most people just don't do it because it's too easy... or in their minds... too hard. Good luck! *crosses her fingers*
Yeah I don't hold out hope   This same woman won't even go to get her BT done, even though it is more than possible identifying inflammatory foods could help her chronic back condition... She has (to quote her) a degenerative disc disease & is often in such immense pain, enough to have to take days off unable to move...

Posted by: FrostedCupCakes, Monday, December 13, 2010, 9:21am; Reply: 15
Quoted from Possum
Fantastic testimony & welcome!! Must tell my boss whose husband has hemochromatosis...


You cannot make people change their ways. They have to discover it on their own, or you may end up sounding like a nagging parent or the health police.
Posted by: Possum, Monday, December 13, 2010, 9:30am; Reply: 16
Yep agree...I have actually stopped trying to be the health police ;)
Posted by: christaalyssaA+, Monday, December 13, 2010, 9:44am; Reply: 17
I would LOVE to actually BE the Health Police!!! lol There are so many people that I would love to give lectin damage fines and cuff them and take them to Dr.D. That would be an awesome job!

But alas... I will just gently share this great info with people that come to me wanting to learn. *puts away her police uniform* :P
Posted by: Possum, Monday, December 13, 2010, 9:48am; Reply: 18
;D :D ;)
Posted by: balletomane, Monday, December 13, 2010, 11:45am; Reply: 19
Quoted from FrostedCupCakes


You cannot make people change their ways. They have to discover it on their own, or you may end up sounding like a nagging parent or the health police.


Ha ha ha, been there, done that, and BACKFIRED!!!  ;D

Well, now I take a step back and just let people come to their own realization, one baby step at a time. Yesterday I made some inroads with my mom, who, despite the onset of various chronic illnesses, thinks that it is too troublesome and expensive to change what she eats (vs. taking prescription pills  ::)). I used the advice that Dr. D gave, which is to encourage people to eat beneficial food rather than putting an emphasis on the avoids. It seemed to have lowered her resistance. I also told her it is important to give the body time to heal gradually (as she might be discouraged if nothing seems to "happen" within a short time frame). As she was expecting a snow storm, I used the analogy that if she has three feet of snow at her door, it takes time to shuffle that away, as the snow wouldn't have piled up in just one night. So the same with her health. She needs to shuffle the lectins that non-compliant food has given her over the years, one step at a time. She asked me why nothing happened in the years before even though she was eating non-compliant food then? I told her that in her youth she might have been able to eliminate 90% of the "toxins" but all those 10%'s have accumulated over the years and are giving her problems now. I could tell that she agreed this makes sense. So now she is going to check out more compliant food and give it a try  ;).
Posted by: chrissyA, Wednesday, January 4, 2012, 6:16pm; Reply: 20
I have a Type O friend who has hemochromatosis, and his Type A wife is one point away from being pre- diabetic, (whatever that means).

We have dinner and game nite with these folks at least monthly, and I regularly but politely decline certain foods because "it's not on my food list" (even some of the dishes that I myself prepare). Well... I'm naturally thin and healthy, so when I say I have a food list, and won't eat some of my own cooking...

Anyway... The wife's diagnosis is recent, so she's become really interested in what my "diet" is all about. They were over a few days ago and I showed them my SWAMI printout and boy, were they impressed! I spent quite some time explaining the whole concept, lent my ER4YT, and suggested they start with BTD's.

I'm looking forward to seeing if they try the plans and what experiences they may have. Are any of you a Type O with this condition? I'd love to cite a personal example for this gentleman. Thanks  :)
Posted by: PCUK-Positive, Wednesday, January 4, 2012, 6:52pm; Reply: 21
I just ppsted a free article on pre diabetes which is probably what she means by almost diabetic.

http://mail1.a4m.com/static/newsletter/Vagnini_Thera11.pdf
Posted by: chrissyA, Wednesday, January 4, 2012, 7:05pm; Reply: 22
No, that's not right...She's one point from being pre-diabetic. I just submitted an edit. Oops  :X
Posted by: PCUK-Positive, Wednesday, January 4, 2012, 7:06pm; Reply: 23
the articles explains the confusion - have a look oxo
Posted by: chrissyA, Wednesday, January 4, 2012, 7:24pm; Reply: 24
policychecker - I just PM'd you...
Posted by: meh206, Thursday, January 5, 2012, 2:35am; Reply: 25
Quoted from Lin
Interesting post and timely.  Several years back I found out I carry one of the genes for this and at that time my iron level was not high enough for me to need to draw blood but I was told to monitor it.  I've been largely following the blood type diet and my iron has dropped also.  I kept wondering why as I was told it would go higher after menopause which I have since gone through but the reverse has happened.  So perhaps it is the Blood type diet.  


About 6 months ago I found out I carry one of the genes. What is your ferritin level?
I was told not to get concerned unless mine gets over 1000.
What do you mark when you do your Swami?
Thanks for the information.
Maryann
Posted by: PCUK-Positive, Thursday, January 5, 2012, 2:50am; Reply: 26
I thought i had put this link in here


http://www.autismhelpforyou.com/Redefining%20The%20Role%20Of%20Insulin.htm

“A New Perspective on Iron Deficiency
Presentation Given by Roberta Crawford in June 2001 at NIH Workshop in Bethesda, MD
A prevailing myth says that iron deficiency is the world’s greatest nutritional problem.
Let’s define anemia: a deficiency of red cells or hemoglobin, or red cells that die too young or are discolored or possess an abnormal shape, or red cells that lack adequate iron.
Now defining iron deficiency—so-called “normal” iron levels vary from lab to lab. Most “normal” levels are set too high. Saturation: 12 to 40-45% is reasonable at the present time. Ferritin: 5 to probably 50. As our years of study have shown, we have had to lower these levels several times to be safe.
Think about it. If “normal” levels are set artificially high, and your levels fall below that “normal,” you are “iron deficient.”
So how much iron does the human body really need? Iron is not excreted. The iron you absorb stays and accumulates in storage except that you can lose one milligram a day through hair, finger nails, skin cells and other detritus. That is the amount needed every day to replace the loss. One milligram. (Women in reproductive years, one and a half milligram). The RDAs or
RDIs recommended by the Food and Nutrition Board is out of date and incorrect. The other way to lose iron, of course, is by blood loss.
The normal levels of iron need to be lowered.
Hemoglobin is not iron! Unfortunately physicians prescribe iron to anemic people who test with low hemoglobin. Yes, the patients are anemic, but the iron is collecting in storage instead of going into hemoglobin. These people are iron-loaded. They need iron removed despite the anemia. The anemia should be treated with B vitamins, especially B12, B6 and folic acid. Many patients with anemia are dying of iron overload, and some are hastened to their death by their physicians who give iron. Blood banks seem to believe that hemoglobin and iron are the same. They have prepared lists of high iron foods to give out to donors with low hemoglobin. They invariably tell these people: “Your iron is low.” Dangerous misinformation.
Physicians like to diagnose or rule out a disease called hemochromatosis. That causes confusion and many problems. There is no consensus. Doctors hesitate to treat without a diagnosis. Too bad that word was ever invented. Each patient is different with different symptoms and different iron levels.
First: treatment does no harm whether there is excess iron or not. A cutoff is set on hematocrit to prevent severe anemia, and when the patient tests under that cutoff, blood is not taken that day. Giving blood is beneficial.
Second: even a small amount of excess iron can damage heart and brain and other storage sites in the body and lead to heart attack or stroke. It is foolish to wait until iron levels confirm “hemochromatosis.”
There is exaggerated concern when hemoglobin falls temporarily, following surgery, for example. Blood transfusions are over-used. A study shows that surgery patients who do not receive transfusions survive better than those who do. [NEJM Feb 1999 340:409-17]
Before taking iron you must test saturation and ferritin. (Ferritin indicates storage iron, which is not essential to maintain life). If both saturation and ferritin are extremely low, you must discover why. Low iron is a signal that iron is being used by cancer cells or is feeding bacteria, or usually it means there is chronic daily blood loss. The bleeding could be from an ulcer or tumor, etc. The source must be found.
Iron is in just about everything. If you are not absorbing the one daily milligram, you are truly on a starvation diet, and low iron is the least of your worries
Posted by: BluesSinger, Friday, January 6, 2012, 3:40pm; Reply: 27
Quoted from FrostedCupCakes


People with Hemochromatosis are not allowed to give blood in Massachusetts I guess there are laws on the books that make hospital liable for giving tainted blood?


Hi there.. there is nothing wrong with high iron blood. IT IS NOT tainted.  Many states are very happy to have people with Hemochromatosis come in and give blood because they NEED high iron blood.  So I don't know what's wrong with MASS!   >:(    

People with Hemochromatosis NEED a place to give blood especially if they do not have insurance and struggle with finances.  I recently had been living in TENN - near Nashville and the blood centers there do not have what they call a 'Special Collections' department so I had to go to a doctor who charged me for every visit to the tune of $700 for three visits.  I was outraged and could not afford it or his cocky attitude.  Now that I'm in Missouri there is a Special Donations dept here and I can go in and give my blood for free.  Thank the Good Lord!!!  :)

I am type O and my Hemochromatosis was discovered 15 years ago after months and months of testing to find out why I was so fatigued and hurting all over.  Finally someone got it right and sent me right away to start my blood draws.  

I thrive on Meat being an O and do not plan to give it up.  The maintenance draws have been approximately every 4-6 months for me but now that I'm headed toward the life change and not having my monthly cycles... I expect it to go up.  I take non-iron vitamins and supps.  One thing that increases Iron absorbtion is Vit C.  So I try not to take this or eat anything high in Vit C during my beef meals.

I know when I get high in iron because my mid back starts to hurt along with other joint areas in my body.  It can be a very dangerous disease and people have been mis-diagnoised for years and then died from it accumulating in the liver area.

So if you have it, keep a close eye on it.  

Any more O's with Hemochromatosis out there?
Posted by: Lin, Friday, January 6, 2012, 9:34pm; Reply: 28
Hi Maryann,
nLast year my ferritin was 100, the Doctor (who specialises in hemochromatosis said it was fine) I travel back and forth to UK a lot with  my family there and they won't take the blood in the US because of past concerns on mad cow disease. Ironic as I'm not a beef eater:)  So if mine ever gets to high I would need to ask for blood  to be draw and thrown away.  
Lin
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