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Hemochromotosis

Karina

By Karina
in Related Issues & Disorders

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Karina Explorer
Karina
Posted

My doc called with lab results today. I had a bunch of minerals and stuff tested for since my celiac disease diagnosis. Anyway, my iron panel stuff was HIGH not low, and in fact it was significantly high, so doc says I may have Hemochromotosis, which can lead to liver problems later. I am so confused, b/c you would think having celiac disease would make it not likely to have high iron stores. I was tested for celiac disease via endoscopy and biopsies. Has anyone hear heard of this being related at all to celiac disease?

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wildones Apprentice
wildones
Posted

My son and I both have celiac disease and high iron levels and have had liver problems. He has had his iron levels tested fairly frequently because he also has short-gut (more than 70% of small intestines removed, his ileocecal valve removed and part of his colon removed). I remember doing research on hemochromotosis several yrs ago, and was told that I don't have it. I guess I didn't really answer your question :unsure: did I ?

Lorraine

Karina Explorer
Karina
Posted
  • Author

Lorraine,

My doc is doing a genetic test to see if I have it. Have you had that done? He also said that the disease doesn't really manifest itself in women until age 50-60 due to pregnancies and menstruation. I was anemic in my pregnancies and had to take supplemental iron :huh: . Another weird thing is a few months ago when I had a physical my "iron" level was low, but my GI doc says that wasn't accurate b/c it wasn't a full iron panel and was only showing what happened to be circulating in my blood at the time of the blood draw. How old is your son? Have they diagnosed him with Hemochromotosis? My doc says it is common, even though it is weird that I would have it and have celiac disease. Exactly what liver problems have you guys had? Another weird thing was that my doc said my bilirubin was high, but my other liver tests were fine. He said this is yet another thing called Gilbert's sydrome--it is benign and requires no treatment or anything, but I asked him was he sure it wasn't related to the high iron, and he said no he was certain it was just Gilbert's. We did of course discuss the ramifications of untreated Hemochrom. on the liver. I am very confused at this point. Do you follow a special diet for the high iron?

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
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      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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