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Hemochromatosis and losing weight

Posted , 9 users are following.

Barb1028
Barb1028

I was diagnosed with hemochromatosis 10 months ago. I have phlebotomy's every two week and am strict on the diet.. no greens, tomatoes, few veggies or fruits. Also no beef, shell fish only white meat chicken and white fish. I feel I am starving, I've lost weight and had no weight to loss. A huge part of my diet has been lots of greens and love tomatoes and tomatoe sauces. I take tons of herbs and vitamins that supposedly help the HH. Any other food suggestions?

1 like, 25 replies

25 Replies

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  • joyce1959
    joyce1959 Barb1028

    Posted

    Hi Barb

    The Haemochromotosis Society recommend a well balanced diet, only avoiding cereals fortified with iron, multivitamins with iron and raw shellfish.

    It is often advised to reduce red meat to twice weekly and avoid liver. Drink tea for the tannins to reduce iron absorption, or drink milk with meals, or any dairy as this does the same. It is important that you get all the vitamins and minerals your body requires to stay healthy especially when having regular venesection. Take a look at the Haemochromotosis Society website they have all the information you need on hh. Take care.

    • Barb1028
      Barb1028 joyce1959

      Posted

      Thank you for the information, I do drink tea and coffee with meals, I have been considering adding more vegetables to my diet. My doctor is a oncologist/hemothologist he is pretty strict with my diet. I will check out the cookbook. Thank you
  • Mrs._Z
    Mrs._Z Barb1028

    Posted

    Sorry you've had such difficulty with your diet.and weight loss.  If you haven't already been told about the Hemochromatosis Cookbook, this may be able to offer you lots of information regarding your diet.  This book does more than include recipes, it actually explains the difference between heme and non-heme iron,  You mention lettuce and vegetables and you may find that these items are not necessarily to be excluded from your diet.  All the best to you    

    • Barb1028
      Barb1028 Mrs._Z

      Posted

      I have seen several hemochromatosis cookbooks, which one is this? Who is the author? Thank you for the information
    • Mrs._Z
      Mrs._Z Barb1028

      Posted

      It's actually called "The Hemochromatosis Cookbook" by Cheryl Garrison.  She is cofounder and vice president of educational product development of the Iron Disorders Insttute,  I believe I purchased my copy through AMAZON.  Hopefully this will add some items to your diet and put you on the road to gaining a few pounds. 

    • Barb1028
      Barb1028 Mrs._Z

      Posted

      I have gone to amazon and ordered the book. Thank you
  • hemopatient123
    hemopatient123 Barb1028

    Posted

    After your ferritin is back to normal, my doctor told me eat like I want. Alcohol, red meat, everything is fine. The catch: come in every 2-3 months for a phlebotomy for life. It's worth it. And healthy. People who donate once a year have a 50% reduced chance for heart attacks in their lifetime. Think about that

    • Barb1028
      Barb1028 hemopatient123

      Posted

      Yes it's totally worth it.. I have no problem with the phlebotomy's, they do make you weak though. I love to eat and like everything so this is hard for me. Thank you for the reply, it's nice to know other people have this mess.

  • sheryl37154
    sheryl37154 Barb1028

    Posted

    Hi Barb, I am so glad that others have told you about "The Hemochromatosis Cookbook".  Take it along to your haemotologist and show him.  His ideas on diet are archaic.  My haemotologist is also an oncologist and he would definitely not recommend what your dr has.

    • Barb1028
      Barb1028 sheryl37154

      Posted

      Thank you I intend to, I am hoping the cookbook helps. I have decided the diet is a balancing act and I haven't figured it out. Do you have HH? How long did it take you to get de-ironed? Any information is appreciated.. thank you

  • mike80628
    mike80628 Barb1028

    Edited

    Hi. First of all...eat your greens and veggies! Having hh is not about giving everything up. It's knowing what to eat with your food. Yes, less red meat is good. The key to your diet is what to eat with your food. I'm now in maintenance and enjoy my food. Had a lamb hot pot last night! Calcium is how magic ingredient. It helps prevent iron absorption. So, when eating your normal diet, have a pint of milk with each meal, or calcium supplements. Also, tannins in tea stop iron being absorbed. So plenty of tea with meals. I love green tea! I take turmeric tablets before meals as well, and cook with it a lot..again it stops iron being absorbed. So, calcium, taninns, and turmeric..and eggs. Plenty of eggs with meals really cuts down the amount of iron absorbed. A normal diet! This can't be controlled by diet..only venesection treatment controls our iron level. So eat normally, but with the above food sources to stop iron absorption. No vitamin c tablets either. Try to eat fruit inbetween meals where possible.

    Hope this helps. Mike.

    • Barb1028
      Barb1028 mike80628

      Posted

      Hi Mike, thank you for the information, I do use turmeric also selenium lots of calcium and drink green or black tea with meals. I have not learned how to combine my foods to ubsorb the least amount of iron. Can you please tell how long it took for you to get de-ironed. I have been at it for 10 months.
    • mike80628
      mike80628 Barb1028

      Posted

      Hi Barb. It took just under a year to get de ironed. When first diagnosed, I really was too scared to eat anything. It is all frightening at first. I know I few folk with hh now. We are all in maintenance, and we pretty much eat and drink what we like. Just give blood every two months. My levels are staying below 50, thought the Haemochromatosis Society say it should be below 100, so I could go less frequently. How far are you along with your treatment now? You'll get there..

    • Barb1028
      Barb1028 mike80628

      Posted

      My ferritin runs between 14-18, my HCT varys but the dr wants it under 32. It's confusing to me, maybe the numbers for men have different standards? I've been to two different specialist and they both say basically the same.

    • sheryl37154
      sheryl37154 Barb1028

      Posted

      I don't understand why some people quote their HCT or worry about it with regard to haemochromatosis.  It just does not come into any haemochromatosis treatment research.  Hb should be noted if one is being venesected very frequently in order to ensure that one is not anaemic and should wait a little while before venesecting again.

      The range on my Blood Count tests for HCT is 0.35-0.47 and my levels appear to be always 0.47.  It just never comes up in discussion and, as I said, in any research about treatment.

      Your ferritin is very low at 14-18, what is your TS% and your serum Iron?  These are what should be looked at.  It can be difficult to reduce the TS% of Homozygous C282Y but keeping it in the range yours is will reduce the TS%, and also your Serum Iron.  If you are comfortable at that range, that is ok, if not, generally you can now allow it to get a little higher.  Keep notes on how you feel at each level till you reach your optimal level (when you feel best).

      If you have not confused your results, I would be asking for a 2nd opinion.  Oh, I see you have - sorry.

      Do you have printed copies of your test results to be sure you are quoting the correct results?  Then phone your country's haemochromatosis association and check with them as what you are saying does not sound correct.

    • Barb1028
      Barb1028 sheryl37154

      Posted

      Yes they give me the paper copy of my numbers ever time I go in for blood letting, my last ferritin was 16, transferrin 199, iron 65, saturation 23. My hct was 35.4, they go by this number to determine if I need a phlebotomy. Both Doctors want that number under 32. The doctor I go to is very reputable and I heard of him from a friend of mine who has had HH for 12 years.
    • sheryl37154
      sheryl37154 Barb1028

      Posted

      Hematocrit is your volume of red blood cells, nothing to do with ferritin or haemochromatosis.  So, no wonder it is confusing what your dr is doing.

      It seems like he is trying to force anemia, as the normal range for hct is 34.9 - 44.5.  Your ferritin is very low, as is your saturation %, however your transferrin and serum iron is high.  What type of haemochromatosis do you have, e.g. which HFE gene/genes?

      I would still discuss this with your haemochromatosis association for clarification.

       

    • Barb1028
      Barb1028 sheryl37154

      Posted

      Yes he is forcing anemia and I am. My genes are from both parents. This has been a learning experience for me and any information is welcome. Thank you so much
    • sheryl37154
      sheryl37154 Barb1028

      Posted

      Which HFE genes, e.g. C282Y, or H63D, or combination of both?

       

    • sheryl37154
      sheryl37154

      Posted

      I ask because not all haemochromatosis is equal, and knowing what the results of your genetic test may help clarify why you have such strange Iron Studies and why your dr is treating you this way.

       

    • Barb1028
      Barb1028 sheryl37154

      Posted

      All I know is I have the gene from both parents.. don't have the specifics

    • sheryl37154
      sheryl37154 Barb1028

      Posted

      Let us know when you find out.  Also, have you read Julia15874 very recent post - she has high hct, etc. and has been diagnosed with polycythemia.

       

    • Barb1028
      Barb1028 sheryl37154

      Posted

      I had to look up polycythemia, never heard of it, I see Dr November 1st. I will put it on my list of questions. I received my hemochromatosis cook book today, I am very excited. These are recipes my husband and I can both read.
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