I've been lurking on this forum for several months, but this is the first time that I've posted anything. I'm hoping that some of the more biochemistry-literate PaleoHacks members can provide some help and advice regarding a somewhat unusual issue.
I have some form of hereditary hemochromatosis (for those of you who are not familiar with HH, it is a genetic mutation that causes excessive absorption of iron from the GI tract). In general, paleo-style eating greatly exacerbates this problem, both because of the emphasis on red meats and the notable lack of phytates in the diet (which seem to have kept my iron levels under control when I was eating a mostly-vegetarian, grain- and bean-based diet).
However, I've found that limiting my red meat consumption (in favor of poultry, mainly) has little to no effect on either my serum iron levels or the rate of iron deposition in ferritin stores. Furthermore, I've recently had blood tests done that suggest at least a marginal zinc deficiency, which is consistent with several lingering symptoms that I've had. According to nutritiondata.com, poultry has a much lower zinc-to-iron ratio than beef, and is not actually that much lower in iron than red meat.
Donating blood is the only way I've found to consistently lower my iron levels, but (a) the effect is temporary and (b) even when ferritin is very low, serum levels remain high, sometimes very high, which I'm concerned may wreak havoc with the delicate balance of iron, copper, zinc, and manganese.
So my plea to the PaleoHacks community is this: can anyone help me figure out how the hell to achieve optimal mineral balance with this disorder? Is this even possible? What else would you eat and/or supplement to mitigate the negative effects of HH? Any other relevant thoughts?
I'm concerned that avoiding red meat is both ineffective and potentially harmful, as it deprives me of optimal quantities of other important nutrients.
Thanks so much in advance.
Edit: I took 1500 mg of IP-6 and 300 mg of apolactoferrin daily for a month, which had no effect whatsoever on my iron levels.
asked byIron_Man (60)
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on January 31, 2012
at 04:52 AM
G'day Iron Man, not sure if this will be helpful at all but you never know :)
i too have this condition and found that when i was concerntrating on eating lower iron foods my iron levels remained the same or increased but mostly increased them (weird!!)- i wondered if the saying 'what you concerntrate on gets bigger' was my problem, what i mean is, i was spending so much time worrying and not living the iron issue was taking control of my life, so i thought to myself- why deprive myself of the things i love MEAT?? So i stopped worrying and started eating a clean diet.
i have been eating a ('mostly') paleo diet for the last 6-9months and with regular v-sections my levels are now at a very good level. i have been aware of my condition for nearly 6 years and it has taken this long to get my levels under control. due to the condition your body will always pull iron from whatever it can.. Crossfit and eating a good balanced diet a big part in keeping my levels under control. i do take vitamin and mineral supps plus a very high potency fish oil and a few other sports products and i use wet celtic sea salt which has helped with some of my side effects of the condition BUT everybody is different and it will take some time to get things under control but the best thing to do is relax, dump blood every 2-3months & live life to the fullest.
a few questions- how old are you? and how long have you been aware of this condition?
on January 31, 2012
at 05:59 PM
My recollection is that the #1 method of reducing the iron is giving blood. You'll pretty much need to do it on a regular basis.
Totally unrelated trivia. The hemochromatosis gene is common in those of European descent, and is believed to be due to the bubonic plague. People with hemochromatosis were more likely to survive to child bearing age.
on January 31, 2012
at 04:49 PM
Iron Man -
I've been trying to manage my iron overload for a few years now (I'm assuming I've had the condition my entire life, but noticed it after going Paleo [ likely just more self-aware ]). At one point my Iron Stauration was at 96% and since then has fluctuated between 50 - 80%. My ferritin levels were close to 300, but after some routine phlebotomies, I got them down. That is actually the only way I've been able to positively affect my numbers - but not to the point I've wanted to. I too have incorporated more fish and poultry in the past year, in favor of red meats. I also stopped using my cast iron cookware in favor of stainless steel. I still eat about 3-4 oz pastured liver once or twice a week, and I did supplement with other vitamins / minerals [ copper, zinc ] with the hope they would compete with iron for absorption.
All in all, I would say it's been a tough, frusterating road to go down. I was vigilant with it in the beginning, but after repeated attempts to get my Primary Care doctor and my Hematologist to help, I didn't know what else to do, and got discouraged. I did reach out to Chris Masterjohn - through a thoughtful gesture from Melissa hunt.gather.love., and also had Chris Kresser take a look at my labwork. Both of them had some good advice and were able to give me more insight into the condition than I recieved from the aforementioned doctors.
Based on my experience, I would say there are things you can do on a day to day basis such as the choices of meats, cookware, possible supplements, but where you really make a difference in the numbers is through routine phlebotomies.
Best of luck, and please do report back if you figure something else that helps :)
on January 31, 2012
at 11:03 AM
I too have this condition and lowered my ferritin from 203 to 18 with five blood donations. My target was around 30 - 40 range so it dropped a bit too low ;). I will re-check my ferritin levels within few months and calculate how fast it has a tendency to rise.
Both Ray Peat and Robb Wolf (the latter in the case of iron accumulation) recommend drinking coffee with iron rich meals (meat, liver) - it can supposedly block the iron absorbtion up to 90 - 95%. I am not aware whether coffee affects zinc, calsium, magnesium etc. absobtion though.
on September 20, 2014
at 06:14 PM
Hemochromatosis is genetic -- it cannot be "undone," it is part of your body's inherited makeup -- and the only "solution" to minimizing its impact is to carefully control your dietary intake of iron, particularly heme iron which is the form most readily absorbed into the body. While phlebotomy can ease iron overload, the iron nonetheless -- in the interim, inbetween bloodletting -- accumulates in your organs, especially your heart and liver. It can cause heart disease (arrhythmia that leads to stroke) and liver failure. Iron also pools in your joints, which can become painful and impede exercise. Joint damage can be permanent. The personal desire to live a "paleo" lifestyle aside, it is an inappropriate diet for someone with hemochromatosis (which is the most common genetic disorder in the United States and often not diagnosed at all, or sometimes only after death and discovered by autopsy). BTW, when you fill out blood donation paperwork, please note that people with hemochromatosis are asked to exclude themselves from donating blood. It is not a win-win thing to do at all, to give blood without identifying that you have hemochromatosis. Most pro-Paleo spokespersons avoid addressing hemochromatosis. You should see your doctor or a geneticist and a nutritionist to seek more informed information about a healthful diet that suits your body. It seems self-defeating, does it not, to eat "Paleo" to be healthy when by doing so you in fact are doing something that could be detrimental to your health.
on October 08, 2013
at 12:32 AM
I’d like to preface this to the fact that I am not a doctor.
Any information I am sharing should be consulted with a professional doctor before taking any of this advice.
Rapid draw of blood makes a major difference with stored non-heme iron in the body, which is needed for the growth of new blood. For those who cannot do bloodletting, chelation is used, but can be harmful to overall health.
Few dietary points: Milk makes a major difference for inhibiting iron, only problem is the amount required to be sufficient at every meal is really not healthy, puss count in milk is extremely high and taxing. Another is somehow other dairy such as eggs seem to make a big difference for me personally, but once again in excess not so good.
That being said, that is all the difference I’ve found that really matters as far as the uptake of iron goes, and this is why:
As my specialist Dr. Ma an oncologist who specializes in heme-diseases stated, "Iron is one of the most abundant minerals on the earth if not the most, it is in everything from the water (no matter how filtered they say it is…) to all food, and it is extremely difficult to remove; iron is strictly regulated by human bodies, because it is vital or else you have all these conditions and symptoms arising causing certain pre-mature death. The problem with the mutation is that there are varying degrees at which you may absorb iron. From hardly any absorption at all to absorbing every speck that enters your body.”
BTW- Vitamin C does triple the absorption rate of iron, but once again you'd be in more trouble to try and rid it of your diet because it plays such an important role.
Now, the domino effect of what Iron overload is causing-
Iron in excess causes all the symptoms you are already most likely aware of but also inhibits the absorption of zinc, which is in every human cell, zinc is required for hormonal cell signaling for proper nervous system health and especially for the regulation of the immune system with the T cells- killer, helper, and suppressors. Known as TH1, TH2, TH3, etc.
Killer cells fight pathogens that enter the body, but if not suppressed after riding these enemies by the T cell suppressor cells they attack the body mistakenly manifesting auto-immune diseases such as cancer, colitis, chron’s, celiac, IBS, psoriasis, etc. the killer cells are signaled by the T-helper cells to come by to the thymus gland located in the lower center of your chest, your spleen also houses over half of your immunity cells, such as cytokines, monocytes, etc. all creating the lymphatic system. These cells travel to the thymus for proper signaling with the proper balance of zinc, magnesium, and copper to transform to one of the three helper cells depending on what is happening to the body.
If outside pathogens are down and you are healthy the killer cells with commit a form of “suicide” in order for their nutrients to be consumed by the helper cells to divide creating new suppressor cells which are important for regulation of inflammation in the body. Again killer cells protect but also can hurt you- causing autoimmune diseases (too much of a good thing) they cause inflammation. While suppressor cells tell the body everything is a o k! (anti-inflammatory).
Magnesium is important in the same process in the life-death cycle of your immune system t-cell friends, playing the role of toxic cleanup, “Superoxide is biologically quite toxic and is deployed by theimmune systemto kill invadingmicroorganisms. Inphagocytes, superoxide is produced in large quantities by theenzymeNADPH oxidasefor use in oxygen-dependent killing mechanisms of invading pathogens.“ luckily it is so fast it doesn’t harm us; unless of course things are out of balance.
Next is Copper – out of balance WITH zinc causes so many problems it is too much to list. I recommend searching Google with the phrase “how to lower copper levels in body” read the website that should hopefully come up first; named drlwilson the page title being “copper toxicity syndrome” he explains in detail the effects of iron in relation to copper and its deceptive tendencies. There are three situations that arise, deficiency, toxicity and bio-unavailability* I highly recommend reading and understanding the section related to bio-unavailability.
Note: zinc, copper, and magnesium although essential nutrients that are highly toxic in excess.
Sorry I'm a little late to the discussion with this, I was searching the internet for correlation on some leads I've been looking to have explained to me in relation to the balancing of micro-nutrients in the body and stumbled upon this...
My grandfather has hereditary hemochromatosis we found out quite a few years ago due to a mini-heart attack from the iron overload stored in his body. I knew I probably had the same being 24 and fighting chronic fatigue, memory trouble, anxiety, ADHD, ulcerative colitis, arthritis and what just started to feel like an overall body shut down. For two years I was trying to get a few doctors to take me serious for this and they'd do a blood test- only to find out a gene test was required after wasted time. Now diagnosed, I have been able to make a life changing turn around now after only after 2 phlebotomies.
on March 25, 2013
at 06:49 PM
My son has just been diagnosed with HH (267/81%) and his dad dug up some useful sounding dietary stuff that he ran past one of the doctors he works with who has an interest in HH. Vit C greatly enhances the absorption of iron as does sugar. HH patients preferentially absorb the NON-HAEM form of iron, dark green leafy vegetables etc. Don't take milk thistle - can't remember why.... And yeah, phytates, oxalic acid, coffee all good for inhibiting absorption. We have no experience of how this might help in practice because he has only had one bloodletting session as yet.