Hemochromatosis: What is it?

We all need iron in our diets. Whether it’s from red meat, leafy greens, or specifically made iron enriched granola bars-we have to get it somehow.

There are a ton of individuals out there that suffer from iron deficiencies, but did you know there are also people out there struggling with an iron overload? (We’re still trying to break the news to Popeye the Sailor Man).

It’s called Hemochromatosis.

Why is Iron so Important?

Iron is important for the diet because it is part of hemoglobin, the red protein responsible for transporting oxygen from the lungs to the rest of your body.

What is Hemochromatosis?

Hemochromatosis is the most common type of an iron overload disease. Too much iron in the body leads to a buildup of iron that can cause damage to organs like the heart, pancreas, endocrine glands, and joints when not treated.

Symptoms Include:

–       Abdominal pain

–       Fatigue

–       Joint pain

–       Low libido

–       Weight Loss

Different Types of Hemochromatosis:

Primary Hemochromatosis:

– Primary Hemochromatosis is inherited and involves genetic defects and mutations in the HFE gene, the gene responsible for regulating the amount of iron your body absorbs from different foods.

Secondary Hemochromatosis

– Secondary Hemochromatosis is not inherited. The most common cause of secondary hemochromatosis is frequent blood transfusions in severe anemic patients.

Neonatal Hemochromatosis

– Neonatal Hemochromatosis is the most rare form of hemochromatosis.  Liver failure, fetus and newborn deaths characterize neonatal hemochromatosis.

Hemochromatosis complications can include scarring of liver tissue, diabetes, weakening of the heart muscle, arthritis, and erectile dysfunction.

Nutrition:

According to irondisorders.org, these are a few helpful dietary recommendations for those struggling with hemochromatosis:

1. Reduce red meat intake.

2. Avoid foods high in animal fats.

3. Limit supplemental vitamin C.

4. Consume alcohol in moderation.

5. Avoid extremely sugary foods and beverages.

6. Consume plenty of fruits and vegetables.

7. Avoid raw shellfish is iron levels are elevated.

To learn a little more about hemochromatosis we talked with Codi Ann Thomsen, craftswoman and founder of West Heritage. West Heritage is a business that focuses on creating quality items and supporting artists, craftsmen and craftswomen like her self! Codi was generous enough to discuss her personal experience with being recently diagnosed with Hemochromatosis.

1. Were you diagnosed with primary or secondary Hemochromatosis, and what symptoms did you recognize before getting diagnosed?

It was my sophomore year of college that I was diagnosed with primary Hemochromatosis. I had been growing increasingly ill but with a variety of symptoms, so I wasn’t particularly sure what was going on. I was having a hard time keeping my food down, had abdominal pain, lost an unnecessary 25 pounds and started to sleep more hours of the day than not, when I could. At the time, I was commuting in and out of Chicago from the suburbs to SAIC and as weeks passed, I was struggling more and more with not only an immense lack of energy in general, but weakness. I was losing an abnormal amount of hair and when I started to complain about pain in my hands and joints that my boyfriend actually pressed me to go into the doctor. He had been staying up late at night researching my symptoms and could find nothing and knew we needed an answer so that I could start feeling better.

2. Did you stay positive when diagnosed with Hemochromatosis? Is so, how?

The original diagnosis was confusing and frightening. Because of my variety of symptoms, they ran several blood tests and found that my iron levels were dangerously high. I believe, if I remember correct, my iron saturation was 76%. They ordered a genetic test for Hemochromatosis, where I of course tested positive, and I met with my hematologist to talk about ways to bring my iron levels down.

At first, I wasn’t necessarily positive about the experience simply due to the chronic pain. It was hard for me to not feel defined by it and as an artist, writer and craftswoman, I was having trouble coming to terms with experiencing joint pain while trying to do what I love. I soon began to realize that building a support system, making the required adjustments in my diet and not pushing myself past my limits were necessary steps I had to make in order to view my disease more positively. Being diagnosed with Hemochromatosis taught me to be gentle with myself, which was something I was struggling with generally in my life at the time. I began to set aside time to rest, take more breaks and pay closer attention to my body and what it needed.

3. What types of foods do you, personally, have to leave out of your diet?

There’s a lot of miscellaneous things that you really only find out through proper research. Red meat is a given and pretty much forbidden and enriched grains are no good either. If you look at the label on a box of cereal, you may notice that extra vitamins are added to help children and adults get their vitamins, including iron. Same with bread. Most bagels are anywhere between 20-50% iron. Raw shellfish can cause bacterial infections because some bacteria seems to grow in iron-rich places. Larger doses of Vitamin C is something that I have to be very, very careful of because it makes me absorb iron more and makes it harder to get rid of. It can also lead to irregular and fatal heart rhythms. I also have to be careful with my alcohol intake as drinking excessively could either speed up or increase my chance of liver failure or liver cancer.

4. Have you found any alternatives to iron rich foods you used to eat that you can’t now?

Turkey burgers! They’re certainly not the same but it helps to settle that craving for a burger and there’s different ways to grill and season turkey burgers to make them taste a little better, in my opinion. Ham is now my go-to for sandwiches and I have been able to find brands that create gluten-free or organic products such as bagels and pizza, which I’m incredibly thankful for as well. Search around at different grocery stores such as Trader Joe’s, Whole Foods and Mariano’s who offer a fairly large variety of alternative foods.

5. Do you have any advice for others who have recently been diagnosed with Hemochromatosis, on diet, exercise, or positivity?

As frightening and sometimes discouraging as it is, try to take it as an opportunity to better your health, improve your cooking skills and take better care of your body. Even with Hemochromatosis, you can live a good, healthy and long life so long as you take care of yourself and be proactive about your condition. Consider purchasing The Hemochromatosis Cookbook to find creative ways to make low-iron meals and check with your local blood donor, as you are fully eligible to donate blood, which is a great way to get rid of excess iron and prevent an Iron Overload.