Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
When I was first told I had HFE (hemochromatosis) I told the doctor i didn't have any of the symptoms, however I now realise I did have a few of them in a mild form. One thing that I did begin to notice about 5yrs ago were digestive issues like bloating, diarrhoea, constipation etc. from time-to-time, I & my doctor put this down to mild Irritable Bowel Syndrome (IBS) {though the doctor never formally diagnosed it as such}. It wasn't a major problem for me for the most part so didn't pay much attention to it, especially since I've cut down on some types of food.
But now I've read that IBS has been added as a symptom. It seems to fit, though of course this could be completely unrelated in my case.
Anyone else with similar symptoms? Did venesctions help reduce/cure IBS like sypmtoms?
But now I've read that IBS has been added as a symptom. It seems to fit, though of course this could be completely unrelated in my case.
Anyone else with similar symptoms? Did venesctions help reduce/cure IBS like sypmtoms?
http://munstermom.tripod.com/irritabl.htm
Does anyone know if IBS can suddenly develop later in life?
I cannot handle cheese at all...yogurt is fine.
My hematologist told me it has nothing to do with my hemo..but I really believe that it IS all interrelated. Because the body is one big working system and if something in that system goes wonky other things are bound to go wonky as well.
On the subject of poop, here is what I found....
http://ezinearticles.com/?Everybody-Poops---What-Your-Poop-May-Be-Trying-to-Tell-You&id=112905
IBS, chronic diarrhea, lactose intolerance..all sorts of stuff, haha.
My lactose intolerance is actually worse now that my iron level is down. It's so weird.
But can anyone answer my question:
'...Does anyone know if IBS can suddenly develop later in life?...'
The book IBS for Dummies says IBS very rarely develops after age 40, nearly all have it before age 35, with 50% of those people getting symptoms in childhood. If it occurs after age 40 then they say it's probably "inflammatory bowel disease" (or cancer).
My symptoms only occurred at about 40 (about 5yrs ago). Before that I ate anything (& I mean everything eg sushi, carpaccio, kangaroo, crocodile, kudu, all dairy, wheat, chilli & spices, oils, to name a few) never had the slightest issue before. My mum said I had a cast iron stomach . . . . now I know she was right! ha! ha!
When I read up on it a couple of years ago I decided the commonly assigned cause (brain-gut "axis") was likely a symptom & not a cause. Particularly since I first experienced it when visiting my sister in Thailand, she was working in a small village in the mountains for an NGO. I saw the meat in the market, covered in flies (despite the efforts of 2 ladies) and thought ...... yes, I'll be eating that tonight! It was later on that trip i first had "issues" though just put it down to travellers tummy. I decided IBS (after ruling out MSG intolerance) was far more likely caused by gut flora eg. ingesting something like giardiasis (can't remeber the name of the other two I suspected). I never managed to get my stool to the doc for testing, due to work, and have only had mild symptoms since then.
What I'm trying to say it that it seems HFE can cause a similar imbalance to occur in our gut flora as it allows flora which require oxygen to live to survive where they should not be able to! Since they do most of the work of digestion it's not surprising they can cause upsets etc. Even if I am wrong about the cause the late onset some of us have certainly suggests it is not the "normal" IBS.
How about your other symptoms, are they better or worse after your iron has been lowered?
mmmm ......... how can I put this .......mmm ....... I have also noticed that often my poo had a "different" kind of backgroud smell, not really bad or anything but I couldn't think what it may be. Now that I know I have HFE it suddenly occurred to me that the smell was "metallic" and I was able to place it, I did some training at a company that galvanised steel products and it smelt just like that. (though it's probably more likely one of the acids they use than the iron that causes the smell, or maybe the reaction between the two?)
OK now you all think I'm a bit crazy, but I swear it's the same!
My other symptoms ease a couple of days after a phleb, (presumably as iron is drawn from the organs), but begin to return after about 4 weeks, gradually getting worse until my 6-weekly phleb. The last week I feel suicidal and just want to go to bed until my bleed. This is a major problem, as my hemo specialist says this can't be due to the HH, as my ferrtin is now, if anything, too low! So I'm kind of stuck, especially as he says he's considering refusing to let me have a phleb so often (6 weeks) if my level remains low, in which case I have no idea what I'll do, as I feel so bad after 5 weeks that I literally don't want to carry on. Anyway, hence the test he ordered for heart failure and, if I do have that as he suspects, then at least there will be a reason and, hopefully, a treatment.
I have never been a fan of a diagnosis of IBS, because it sounds like a symptom and not a disease.
I would look up celiac disease and see what the list of symptoms are and which ones match yours. they do vary which is wy the condition is often overlooked by doctors.
good luck.
Yes, I agree, could be something unrelated.
I've read through a few descriptions of Celiac and don't think I have it, though of course the only way to be certain is to be tested, something I 'll now consider, though my digestive symptoms were mild & only began a few years ago. My sister has one of the additional symptoms listed for celiac (unexplained iron-deficiency anemia, for which she is currently being tested, as well as HH), so this may shed more light on it.
Hope my replies didn't have too much detail! ha!! ha!!
I guess HH could have been the initial trigger for your other symptoms, lets hope they diminish now that you've got the HH part fixed & soon hopefully the heart also.