Sob story - Page 2

^good luck. my friend has celiac and gets by okay.

is that hemochromatosis under the umbrella of autoimmune disorders? or blood disorder?

^ i hope he did so with more tact than that. i just hope you have a doctor you like/trust as it's nearly as important as their knowledge base IMO. I'll assume you're getting a 2nd and 3rd opinion?

I just want you to know that, technically, your survival, thanks to our modern understanding of how the body works and what our foodstuffs contain, is going to delay further evolution for the rest of us. So thanks a lot!

From my experience as a dietitian, both conditions are very manageable. Hemochromatosis with regular phlebotomy and celiac with a gluten-free diet. Below is a good website that sells a variety of gluten-free products.

http://www.glutenfreemall.com

Best of luck.

Did you have symptoms?

What made you suspect something might be wrong?

I had Hepatitis C from a bad blood transfusion many years ago. In the late 1980s, early 1990s it was supposedly a death sentence. But treatment has improved remarkably and I underwent Interferon Chemotherapy 3 years ago. I'm now zeroed out ( of the virus ) and feel fine. I'm basically cured.

The point is that the treatment of blood and liver disease ( if you have access to good medical care ) has improved and is improving daily. Good Luck and always try to have a positive attitude.

I was just watching season 4 of House, M.D. and one of the episodes had a kid with hemochromatosis. One of the most interesting episodes of the season, too.

Good luck, man.

My understanding is that Hemochromotosis can sometimes be the result of undiagnosed Celiac. While I have been told that treating the Celiac disease (i.e. gluten free diet) does not reverse the blood condition, I am sure it will help. Perhaps your liver might respond positively after a few gluten free months.

Good luck.

p.s., while I haven't bothered to check the G-F websites people have been posting I am sure there is lots of good stuff there. My wife makes homemade chocolate filled waffles every morning for breakfast for my kids and last night I had a spice-cake cupcake with dinner. She makes a great chocolate cake, too (plus there are the standard flourless meringue-based chocolate cake recipes). Quinoa goes a long way towards adding protein to things like rice. We get great oat bread from a bakery in Brooklyn. In other words . . . lots of options.

hossoso, I'm sorry to hear that. I was actually diagnosed with hemochromatosis earlier this year. Oddly enough I'm 27 as well. I had two blood tests come back with high ferritin levels and I was referred to blood specialist. He gave the HFE gene test and I found out my HFE gene was abnormal (essentially a positive indicator for HS). The doctor then put me on a monthly phlebotomy regiment (giving 500ml of blood) to lower my ferritin levels. My levels dropped enough that he stopped after 3 months and now I am just on a regular monitoring interval to make sure they stay in the healthy range. They never once mentioned a biopsy, but my ferritin was not as high as yours. The way I understand diet restrictions is that you are supposed to maintain a normal iron intake, but just avoid excessive intake. This means avoid any supplements/vitamins with iron, avoid eating excessive amounts of red meat (I think you have this covered), and watch eating anything that is iron fortified. Most breakfast cereal is iron fortified and can contain something like 80% RDA of iron. Since the liver acts as a filter for iron, it makes you susceptible to cerosis and liver cancer. The liver is unable to remove excess iron and so it accumulates there permanently. This accumulation is what can eventually lead to the the conditions I previously mentioned. Regular level monitoring and phlebotomies should reduced this effect. Unfortunately since we are at such a high risk for liver disease it is recommended to limit alcohol consumption. I was told it's ok to have alcohol, but to limit my consumption to 2 drinks and to not make it an everyday occurrence. The one thing that pisses me off about this disease it the way it is treated by blood banks, mainly the Red Cross. Because I'm required to give blood whenever my levels get too high I am an excellent candidate for donations. The FDA claims the blood from a hemochromatosis patient is perfectly fine for collection and use. Unfortunately the Red Cross will not accept me as a donor because they feel it violates their ethical policy. They see accepting my donation as providing a service to me and the Red Cross does not give any form of compensation to blood doners. So instead of my blood going to help someone, I end up paying my doctor to just throw the blood away with the rest of their medical waste. The above information is just what I have picked up over the past few months. You might have already learned all that stuff, but I I figured I would share anyways. Feel free to correct me since I'm still in the early learning phase about how the condition affects the body. I added a few links below that I found helpful. http://www.medicalnewstoday.com/your...pinionid=13739 http://www.americanhs.org/ http://www.webmd.com/a-to-z-guides/h...-gene-test-hfe

+1

Buck up, hossoso. I've been on the gluten-free diet since early 2006. It's not fun, especially in restaurants, but it's certainly not horrible. You're going to start eating out less and shopping more at health food stores. As medical treatments go, that's not so bad.

Regarding the hemochromatosis, it sounds like you're going to be getting bled on a regular basis. There are people who donate blood once a month just because they're the charitable type. Now you can be one of them. As long as you don't have any serious organ damage from being undiagnosed for a long time, consider yourself mildly unfortunate, but certainly not doomed.

Pick up a copy of the Gluten-Free Bible by Jax Lowell and start getting familiar with your new lifestyle.

FTR my sister has Crohn's disease. But she loves Jesus and therefore evolution doesn't affect her.