Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Secondary Hemochromatosis?

Candy

By Candy
in Related Issues & Disorders

Recommended Posts

Candy Contributor
Candy
Posted

I seem to get too much Iron or it isn't being processed correctly by the Liver-I had the Hemochromatosis test and it was NEGATIVE-but I often have gold bronzy skin and ,my heart tends to hurt,and my joints are stiff,yet all regular blood work given by the doctor comes back normal.

Do any other Celicas out there tend to have this?

Also My iron level was a little low on the bloodwork test despite the fact that I seem to be overdosing on Iron,so apparently my iron isn't being processed properly through the liver,and goes elsewhere,but where I don't know...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


TotalKnowledge Apprentice
TotalKnowledge
Posted

My sister has been diagnosed with Hemochromatosis. She has been very ill for some time. They have also scheduled her for a test for celiac. Her blood tests came back normal.

She has already started to remove gluten from her diet to see if she feels better. It has made so many of my problems better that she is going to give it a try. She of course going to have to start eating gluten again before her test at Duke.

Having started researching the heck out of Celiac's disease, gluten intolerance and hemochromotosis I have come across many studies researching a possible link. I have not found anything conclusive but with all the other problems that can come from gluten intolerance it would not surprise me.

[edit] Her diagnosis was via liver biopsy. She tested negative for the genetic markers, making her Hemochromatosis one of the rarer varieties.

georgie Enthusiast
georgie
Posted

My Iron and Ferritin were normal high when dx with Coeliac, and have been climbing steadily in the last 3 years on the gluten-free diet. They are now borderline high... Am about to have another test - Dr checking levels every few months now. Have tried to stop eating red meat as often and more chicken and fish .. The Celtic Curse they call it and as Coeliac is associated with a Celtic ancestry as well I think they may be connected. I had some good links that explained a theory that HH may even be a survival adaptation for Coeliac. My HH genetic tests are normal but there are lots of genes not able to be tested yet. Open Original Shared Link

Canada HH has a good site. Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      14

      Pain in the right side of abdomen

      @Theresa2407, My Non-Alcoholic Fatty Liver Disease (NAFD), now called Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD), cleared up, resolved, after supplementing with Thiamine B1 and Riboflavin B2. "Specifically, higher intakes of vitamin B1 and vitamin B2 were negatively associated with the risk of NAFLD. Consequently, providing...
    2. trents
      - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      3

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they...
    3. Scott Adams
      - Scott Adams replied to colinukcoeliac's topic in Gluten-Free Restaurants
      3

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      This is a very common source of frustration within the celiac community. Many restaurants, including large chain restaurants, now offer a "gluten-free" menu, or mark items on their menu as gluten-free. Some of them then include a standard CYA disclaimer like what you experienced--that they can't guarantee your food will be gluten-free. Should they even bother...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Coping with Celiac Disease
      4

      Barilla gluten free pasta

      That is a very old study that concludes "Hypothetically, maize prolamins could be harmful for a very limited subgroup of CD patients", and I've not seen any substantive studies that support the idea that corn would be a risk for celiacs, although some people with celiac disease could have a separate intolerance to it, just like those without celiac disease...
    5. knitty kitty
      - knitty kitty commented on Scott Adams's article in Latest Research
      2

      Do Severe Symptoms at Celiac Diagnosis Predict Long-Term Health? (+Video)

      I agree, @Flash1970, I've found a grain free diet more beneficial, too. I like the Autoimmune Protocol diet, a paleo diet, which removes potential problematic foods while healing after diagnosis, then can be expanded and easily maintained long term.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,477
    • Most Online (within 30 mins)
      7,748
    Matt Johnston
    Newest Member
    Matt Johnston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Theresa2407, My Non-Alcoholic Fatty Liver Disease (NAFD), now called Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD), cleared up, resolved, after supplementing with Thiamine B1 and Riboflavin B2.  "Specifically, higher intakes of vitamin B1 and vitamin B2 were negatively associated with the risk of NAFLD. Consequently, providing adequate levels of Vitamin B1 and Vitamin B2 in the daily diets of postmenopausal women could potentially serve as a preventive measure against NAFLD." Association between dietary intakes of B vitamins and nonalcoholic fatty liver disease in postmenopausal women: a cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC10621796/
    • trents
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By trents · Posted

      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
    • Scott Adams
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By Scott Adams · Posted

      This is a very common source of frustration within the celiac community. Many restaurants, including large chain restaurants, now offer a "gluten-free" menu, or mark items on their menu as gluten-free. Some of them then include a standard CYA disclaimer like what you experienced--that they can't guarantee your food will be gluten-free. Should they even bother at all? This is a good question, and if they can't actually deliver gluten-free food, should they even be legally allowed to make any claims around it?  Personally I view a gluten-free menu as a basic guide that can help me order, but I still explain that I really have celiac disease and need my food to be gluten-free. Then I take some AN-PEP enzymes when my food arrives just in case there may be contamination. So far this has worked for me, and for others here. It is frustrating that ordering off a gluten-free menu doesn't mean it's actually safe, however, I do feel somewhat thankful that it does at least signal an awareness on their part, and an attempt to provide safe food. For legal reasons they likely need to add the disclaimer, but it may also be necessary because on a busy night, who knows what could happen?
    • Scott Adams
      Barilla gluten free pasta

      By Scott Adams · Posted

      That is a very old study that concludes "Hypothetically, maize prolamins could be harmful for a very limited subgroup of CD patients", and I've not seen any substantive studies that support the idea that corn would be a risk for celiacs, although some people with celiac disease could have a separate intolerance to it, just like those without celiac disease might have corn intolerance.
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  It's the same here, doctors check just Vitamin D and B12 routinely.  The blood tests for other B vitamins are so inaccurate, or expensive and time consuming, doctors tend to gloss over their importance.   B vitamins are water soluble and easily excreted in urine.  Some people need to be careful with Pyridoxine B6 because they can store it longer than most due to genetics.  A symptom of Pyridoxine B6 deficiency is peripheral neuropathy.  Taking Pyridoxine B6 will relieve the neuropathy, but excess Pyridoxine can also cause peripheral neuropathy.  So, if neuropathy symptoms return, stop taking the Pyridoxine and it will resolve quickly as the excess Pyridoxine is used.  But the body still needs the other B vitamins, so taking them separately without Pyridoxine can be an option.   If one is low in Vitamin D, one may also be low in the other fat soluble vitamins, A, E, and K.  Vitamin K is important to bone and circulatory  health.  Vitamin A helps improve the health of the intestine, eyes, skin and other mucus membranes.  Vitamin E helps our immune system stay healthy.   Important minerals, iron, magnesium and calcium, as well as a dozen or so trace minerals are important, too.  They need the B vitamins to be utilized, too.   Our gluten free diets can be low in B vitamins.  Our absorption can be affected for many years while we're healing.  Supplementing with B vitamins boosts our absorption and helps our bodies and our brains function at optimal levels.   Hope this helps!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.