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.
I happened to notice DigestEze (Bioglan, Australian company) [didn't know you could buy enzymes] the other day which made me wonder if it's actually the lack of enzymes that causes IBS / digestive problems for us HH sufferers, reason being that HH can cause dry mouth/eyes etc and saliva is a prime source of some enzymes (even if we produce enough fluid enzymes may be lacking). Also we know HH affects many other organs which could mean reduced enzyme production from the liver, pancreas etc.
Enzyme List (selected)
Amylase is found in our saliva and in the enzymes released from the pancrease, a starch-dissolving enzyme (& carbs & sugars)
Lipase is an enzyme that works throughout the digestive process to break down the fats & oils in our diet, it's made by the liver
Protease enzymes that break down proteins & keeps the small intestine free from parasites, yeast overgrowth and bacteria
Maltase, invertase, sucrase and diastase are all enzymes that break down specific sugars we ingest
(Maltase and diastase for malts, invertase & sucrase good for sucrose or table sugar, lack of these can cause Stomach cramps, bloating and gas)
Lactase breaks down sugars from dairy products
Cellulase / hemicellulase for the celluse (plant fibre) in vegetables etc
Enzymes from foods
Papin for meat digestion (used in meat tenderizers) [from pawpaws]
Bromelain enzymes that break down proteins [from Pineapples]
Another thought is acidic foods increase absorption of iron. Perhaps our bodies try to compensate for over absorption of iron by reducing the acidicity of our stomach and this causes bloating gas etc as some foods are not broken down properly e.g. meat [low acidity is known to cause digestive problems]. Non-heme iron requires being released from food components by hydrochloric acid and the digestive enzyme pepsin in the stomach (3). Non-heme iron also needs to be shuttled from the digestive tract into the bloodstream by a protein called transferrin. Low stomach acid also causes low absorption of vitamin B12, something many of us have, a possible clue?
The full B group of vitamins is important for enzyme production, so maybe it's just that lower stomach acid reduces our ability to produce enzymes due to less B vits being absorbed & it's not related to actual impaired organ function.
Now that I'm almost deironed my IBS symptoms have improved considerable and are almost back to 100%. I guess it may not be best to try taking additional enzymes before you are deironed, if the lower enzyme production is the bodies attempt to reduce iron absorption (though OK if just a side effect), enzymes could increase iron absorption. However it could improve stomach issues. Maybe if we start to take them perhaps we will notice a change in the rate of iron reduction?
Another possibility is the pancreas creating too much enzymes (I'm just guessing at this) as if pancreatic polypeptide (PP) production is low it will not give proper negatively feedback on pancreatic secretion; meaning that it will not inhibit enzyme secretion fully when it should & the pancreas continues to produce digestive enzymes. In other words high iron could just as likely reduce the control mechanism (PP) as the actual enzyme production, thus allowing excessive enzyme production. Though I think this is less likely, especially as iron may act on both and also reduce enzyme production. But this is all guess work, as I've not seen any info on this area.
A few notes of caution; there has been some suggestion that taking oral enzymes may lead to suppression of natural enzyme production (in non HH people/animals, so perhaps it would not affect us IF we already have low natural levels?), though another study found no link.
Also, apparently some products have added hydrochloric acid, this probably would increase iron absorption so possibly best to avoid products with this in, though on the other hand if HH reduces acid levels in stomach .
Also, our natural production of enzymes may begin to recover over time so we may be able to reduce/stop enzyme supplementation over time.
Some research has failed to find any benefits of enzyme supplementation for people with IBS etc, though if this would also be true for us (assuming we have lowered enzyme levels) is anyone's guess. We'll just have to try and see if there is any improvements.
Well they turned out longer than intended!! I realise it's a bit speculative but would like to hear your thoughts on this area, especially if you've tried any enzyme supplements.
Enzyme List (selected)
Amylase is found in our saliva and in the enzymes released from the pancrease, a starch-dissolving enzyme (& carbs & sugars)
Lipase is an enzyme that works throughout the digestive process to break down the fats & oils in our diet, it's made by the liver
Protease enzymes that break down proteins & keeps the small intestine free from parasites, yeast overgrowth and bacteria
Maltase, invertase, sucrase and diastase are all enzymes that break down specific sugars we ingest
(Maltase and diastase for malts, invertase & sucrase good for sucrose or table sugar, lack of these can cause Stomach cramps, bloating and gas)
Lactase breaks down sugars from dairy products
Cellulase / hemicellulase for the celluse (plant fibre) in vegetables etc
Enzymes from foods
Papin for meat digestion (used in meat tenderizers) [from pawpaws]
Bromelain enzymes that break down proteins [from Pineapples]
Another thought is acidic foods increase absorption of iron. Perhaps our bodies try to compensate for over absorption of iron by reducing the acidicity of our stomach and this causes bloating gas etc as some foods are not broken down properly e.g. meat [low acidity is known to cause digestive problems]. Non-heme iron requires being released from food components by hydrochloric acid and the digestive enzyme pepsin in the stomach (3). Non-heme iron also needs to be shuttled from the digestive tract into the bloodstream by a protein called transferrin. Low stomach acid also causes low absorption of vitamin B12, something many of us have, a possible clue?
The full B group of vitamins is important for enzyme production, so maybe it's just that lower stomach acid reduces our ability to produce enzymes due to less B vits being absorbed & it's not related to actual impaired organ function.
Now that I'm almost deironed my IBS symptoms have improved considerable and are almost back to 100%. I guess it may not be best to try taking additional enzymes before you are deironed, if the lower enzyme production is the bodies attempt to reduce iron absorption (though OK if just a side effect), enzymes could increase iron absorption. However it could improve stomach issues. Maybe if we start to take them perhaps we will notice a change in the rate of iron reduction?
Another possibility is the pancreas creating too much enzymes (I'm just guessing at this) as if pancreatic polypeptide (PP) production is low it will not give proper negatively feedback on pancreatic secretion; meaning that it will not inhibit enzyme secretion fully when it should & the pancreas continues to produce digestive enzymes. In other words high iron could just as likely reduce the control mechanism (PP) as the actual enzyme production, thus allowing excessive enzyme production. Though I think this is less likely, especially as iron may act on both and also reduce enzyme production. But this is all guess work, as I've not seen any info on this area.
A few notes of caution; there has been some suggestion that taking oral enzymes may lead to suppression of natural enzyme production (in non HH people/animals, so perhaps it would not affect us IF we already have low natural levels?), though another study found no link.
Also, apparently some products have added hydrochloric acid, this probably would increase iron absorption so possibly best to avoid products with this in, though on the other hand if HH reduces acid levels in stomach .
Also, our natural production of enzymes may begin to recover over time so we may be able to reduce/stop enzyme supplementation over time.
Some research has failed to find any benefits of enzyme supplementation for people with IBS etc, though if this would also be true for us (assuming we have lowered enzyme levels) is anyone's guess. We'll just have to try and see if there is any improvements.
Well they turned out longer than intended!! I realise it's a bit speculative but would like to hear your thoughts on this area, especially if you've tried any enzyme supplements.
You are just too good at this thought provoking suggestion/speculation/queries. Wow :)
OK, I understand and can follow you for each 1-2 paragraphs but my brain fog isn't totally gone yet (though I'm down to 40) and my brain hasn't connected the entirety of your 'paper'.
As I said, you really are good with your thought processes & queries. You need to hook up with a researcher or someone doing a fellowship in one of the teaching hospitals/medical ctrs. They would LOVE a challenge. You present a viable theory(ies)!
Can't wait for other comments.
Well Done, feral
btw..... what line of work are you in?????? lol
zzzzzzzzz
Well it's just about all speculation ....... but I live in hope some, PHD student etc. may research it one day .....
Work? Well started off studying aero engineering but switched & graduated in electronics engineering, but then worked in telecoms developing new products e.g. 3G, 4G, Bluetooth etc. always having to learn new things, I now wish I'd done something more medical
For some reason it appears people with HH have trouble processing fats, not sure if it is due to damage to gallbladder, or removal of gallbladder, but I know in my own case, it is the later...very informative...you are really on to something here...and yes the enzymes do help....I just have to remember to take them...4 horse pills with every meal...or 1 or 2 with a snack...but it does work..
My doctor suggests the reason for low vitamin B's & low vitamin d could possibly be the very thing keeping us alive...phlebotomy...my new internist actually did a full blood panel to check vitamins and found all b's low, and low calcium & vitamin d...
Glad to hear enzymes are helping you, a couple of people here in Australia have said the same also. Wow, 4 "horse pills" with every meal! The ones I looked at (DigestEZE [don't know if available in US]) were not too big, just fractionally bigger than the very common two coloured capsule type pill, and dose is only 1 with meals, maybe you can find some more like them in US.
Each pill has the following in them (maybe yours have more?)
Amylase (12000 DU) 120mg
Bromelain (3 000 000 PU) 100mg
Protease (35000 HUT) 70mg
Lipase (1000 LipU) 57.5mg
Tilactase (1200 ALU) 12mg
Cellulase (200 CU) 5mg
I think your doctor is half right, it stands to reason removing blood to reduce iron will also reduce all other blood born vitamins, minerals etc., however many will be easily replaced either via diet or stores held in organs etc. But he should also know that HH patients often already have lowered levels of other vitamins etc before phlebs. (he probably does, just didn't say it well, I guess)
If we HH'ers have lowered enzyme production then pills should also help us absorb vitamins & minerals better as our foods would be broken down better making vits etc more available for absorption. (I assume)
Many Naturopathic practitioners say the current levels of B12 in particular are set too low and attribute low levels to many of the symptoms HH also produces, like fatigue (though our fatigue may have other causes also e.g. hormones, but B12 seems to work for many of us also, perhaps enzymes would make B12 supps even more effective for us)
Like this one here
http://www.townsendletter.com/FebMarch2011/b12psych0211.html
(Note: some patients had injections of B12 which had a far greater effect on levels than oral supps)
Here are some things I know have happened to me...I was diagnosed first with porphyria cutanea tarda, which came out because of the high amount of iron, which in turn causes the uroporphyrinogen amounts to increase and that causes the "purple" tint to PCT patient urine. Because we ALREADY have a gene mutation, the synthesis of heme appears to be messed up anyway, so the multi-step process of synthesizing things in your urine is already messed up (http://ghr.nlm.nih.gov/gene/UROS).
Then, years later, I develop horrible pain (been having phlebotomies for 12 years by this point) and was supposed to be "normal", but if left to my own devices, decided to continue my research into my pain. My stomach was bothering me as well. Finally realized that my TSH was thrown off, but could not prove my theory until I was diagnosed with Hashimoto's disease. I then read that eliminating gluten from my diet would help my horrible pain and joint inflammation. That is where I am now. Whew. Research on...
drowqueen, Did eliminating gluten help with the pain or not ?
With so many of us with abdominal issues with HH, has any one ever done a study to see what issues everyone has? I see abdominal pain, listed but that is usually where it ends, and from the reading I have done, lots of people have pain, diarrhea, gas, bloating, and heartburn. Did I leave anything out?
I know when I had the bout of pancreatitis it was pure hell.. the pain was awful anytime I ate anything, so for a year I lived on Gatorade & pureed vegies. Was in the hospital for a week til I could drink water. That was when I was put on the pancreatic enzymes.
MissSophie