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Hi All--

I want to thank everyone who responded to my question, which was....Does anyone know if there is a connection between hemochromatosis and celiac? Both are inherited, but hemochromatosis is not an autoimmune disease. I thought a connection might be a stretch, but according to the replies I received, perhaps not. I was hoping for perhaps two or three responses, but as usual, many more shared information and personal stories. I tried to write each person individually (hope I didn't miss anyone), as I truly thought everyone went beyond the call....I mean, who's ever really heard of hemochromatosis? Below are the replies.....pretty interesting reading. Thanks, again.....

Cheers,
Ayn in Alabama
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Yes, I was diagnosed with hemachromatosis in addition to celiac disease. I need to have about a pint of blood removed every other month to keep my ferritin under control. I also was diagnosed with cancer about a year and a half ago. I have since gone into remission after extensive chemotherapy. I now only get chemo for four weeks every six months to make sure it doesn't return.
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A year or so ago, someone made a statement, that celiac and hemochromatosis both come from the same gene. They thought everyone knew that; I had never heard it.  My sister developed hemochromatosis at an extremely young age (compared to the norm)
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In the US, 1 in 200 people carry double genes for hemochromatosis, and absorb 3X as much iron from their diet as normals.  Celiac disease damages the area of the intestine where iron is absorbed, so the combination creates a celiac who isn't suffering from iron deficiency (they can still be anemic from B12 or folate malabsorption) AND a person with hemochromatosis
whose iron isn't going through the roof.  HOWEVER, when that person stops eating wheat and gets their guts healed, their genetic potential for extra iron absorption is unleashed.

I am on the hemochromatosis support group for my husband, who apparently does not have CD.  We do have a celiac on that group who developed iron overload 7 years after going GF.  It's something to keep in mind if years after going GF you develop arthritis in your hands and feet, fatigue, upper quadrant pain, heart arrythmias... well, the early stages are variable,
but that's the best time to catch it.  And hard as it is to believe, your dr probably knows even less about hereditary hemochromatosis and he/she knows about celiac.  The tests to ask for are serum iron, TIBC, % saturation, and ferritin.  Some drs just screen with ferritin, but they say the ferritin test is useless for anyone with the French version of HH.
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according to this article you can have both. [You will have to type the link into your browser by hand]
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15076002&query_hl=1


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When my paternal grandfather, a non-drinker, died of cirrhosis of the liver due to undiagnosed hemochromatosis, my parents were both checked for the genetic factor for hemochromatosis and were found to be negative (my mother was checked too because of the high prevalence with Danish people). Those not showing symptoms could therefore still request genetic testing.

Two of my male cousins also have hemochromatosis and have had blood taken monthly to lower their iron levels since they were children. Apparently females have less of a problem due to menstuation.
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As a younger woman (not celiac at the time) I was always anemic.  I was diagnosed celiac a year ago and now have an "iron overload."  The doc didn't use the term hemachromotosis but I guess it is the same thing that you are talking about.
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my maternal grandfather died of hemochromatosis, and my mom and i both have celiac, and we suspect he did too, he had a "nervous stomach".  however, my mom and ihave both had the gene test for iron overload disease and are neegative.  i would suggest that they have a corrolational relationship, in that the same populations are likely to have the genetic propensity, but one does not cause the other.  though they may exacerbate eachoter's
symptoms.

ps menstruating women have a built in treatment for iron overload - for men and after menopause, removing less than one pint of blood a month will prevent the diseases which cause death for those with iron overload. my grandfather died of a stroke and diabetes officially.
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Are you well hydrated? I was shocked when I had bloodwork that showed high hemoglobin, but when I looked up the causes, the most likely for me was dehydration. This is something I really have to work hard at. That not well written book Your Body's Many Cries for Water does mention all the ways that lack of water affects us, and this does include all of our hormones. He says that you cannot count any fluids other than water, and the basic rule of thumb is one glass 1 hour before and 2 1/2 hours after each meal. I'm trying very hard to do this and do think it is helping me overall.
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My Grandmother had this disease, only in her day, they called is something else, but that's what it was. I recall her skin turning dark and she had to have bloodlettings. She had a host of health problems, including rheumatoid arthritis, heart problems, etc. I have no clue if she had celiac or not though, so that can't help your question. I can tell you that most undiagnosed celiacs won't know they have iron overload until the go gf, and their bodies start absorbing it. In fact, I am sure there is at least one woman who will reply to your post about this, as her Son was diagnosed with this, after becoming gf. I have been tested for it, but you need the ferratin levels checked and your saturations, etc. Basically the Iron and total Iron Binding capacity
and saturation  or something on that order. Mine turned out negative, only I still think I have it. Mostly because I have been having terrible peri-menopausal things going on and can bleed for months at a time. Women are less diagnosed than men are, due to have monthly periods and I suspect that I shall be getting another test on down the line, once I am over and done with this monthly, or months at a time thing.  Some folks don't even know they have this until well into their 60's AFTER the damage has been done. Doctor's aren't that concerned with this, much like celiac, and sleep apnea, because none of these require "drugs" and so they don't make big bucks from it. Consider yourself lucky that yours is even up on it. I hope you don't have it, but if you do it is very treatable. There are also support groups for this as well. I hear tell that the bloodlettings aren't, always that pleasant but in time, one gets used to them and after a
while, you don't have to do it as much, once you get your levels down. Good luck! I am sure you will find out that people on this list might have iron overload, but really can't say if it is related to celiac or not. I am inclined to believe anymore, that most things are though, but Doctor's are just treating symptoms of it all
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Why do you bleed through the kidneys? Have you had a ferritin blood test? If one has too much iron one can give blood once a mo and this will keep it in check. Anemia is at the opposite end of too much iron.

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You may or may not be interested but I have polycythenia or too many red blood cells and I need to have blood drawn off every month or so.  It is one of three conditions including hemochromatosis and porphyria for which one must have blood drawn off. The doc realised my hemoglobin was high and looked at my hematocrit which was about 49. I had to go immediately and have it drawn. They did a pint at a time til now when I have 1/2 pint as I
am at 39 now.  As soon as they started drawing I felt much relief from pounding heart and fatigue. If I got even a minute amt of gluten it would set off this scary pounding.  Of course my heart rate still goes up over 120 with gluten but the pounding is not happening. The blood was too thick for my heart to pump so I was so tired.

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My husband has the blood problem and was diagnosed by his cardiologist.  He has a mitral valve problem also and his his red cell count is too high but the cells look normal.  It makes the valve work harder so he goes and donates blood every time he is eligible  (doctor's advice) every 62 or 63 days and thinks he feels better that way (less fatigue).  He is pure German
heritage.  His mother died of MS, and we had her tested a year before she died and was
positive on all blood tests for celiac.

He has not eaten wheat for years because of allergy but got enough incidental flour and other gluten (barley) in his diet to have a low positive blood test.  His health has improved in a lot of weird things since he is gf.  He has 2 copies of the same celiac gene when tested.

Our daughter almost died when her celiac kicked in and I have written about her reflux on the list.  Inspite of having two different genes, hardly being able to eat for a couple of weeks, hair falling out, blood wouldn't clot, and finally maturing and menstruating she has never been anemic.  Now that she has probably regained her health I should probably get her blood tested to see if she has it like her Dad.  Nearly all of his characteristics are genetically dominant ones and she follows him.

I also have 2 copies of a different celiac gene than my husband, and because of female hormone problems have always had a heavy monthly blood loss, but I have never been anemic.  I wonder if maybe I have this problem also because the doctors were always surprised I did  not get anemic. I am 1/2 Danish (southern Denmark near the German border), 1/4 German and 1/8 English and 1/8 ScotsIrish if that means anything.

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In My Opinion Hemochromatosis does occur more frequently in people with celiac or gluten intolerance.  At a celiac meeting last year there were a couple of people there that it ran in their families.

I have two DQ1 genes, I am a very sensitive gluten intolerant person.  My children & grandchildren also have the genes (also daughter in law) we all get the atypical symptoms with the neurological problems, of headache, depression, seizures etc.    My Father's brother died of hemochromotosis many years ago at a young age.  I am positive that their mother also had celiac or gluten intolerance because "everything she ate made her sick" they said & she died young of a stroke.  She was Irish/English.  The men were English/Irish Webb's.  The Webb's are a HUGE family in this country. There is a DNA database that we belong to for genealogy.
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Your posting caught my eye as my brother's diagnosis of hemachromatosis led to my celiac diagnosis.  He insisted we all be checked for hemachromatosis after he was diagnosed.  I do not have it, and he does not have celiac (at least not yet), but the bloodwork my dr. ran looking for the hemachromatosis came back abnormal in other areas (anemia and liver enzymes) and
eventually led to my diagnosis of celiac after a biopsy.  I'm interested in the feedback you get as we have both diseases in our family.


























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