Lactose Intolerance- what is it? (please note, this is quite long.)

Anyone who has read my blog in the last 24 hours would know that my youngest munchkin has recently been diagnosed with lactose intolerance. Im pretty sure we all know that its basically like an allergy to dairy products. Naturally I investigated this some more to understand it better, and

PLease note now this contains a fair bit of personal information pertaining to me and my family.

While some of this information comes from conversations with various doctors and health nurses, a fair whack of this information is paraphrased from Wikipedia, whose copyright policy states :

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the link for the page i am referring to is http://en.wikipedia.org/wiki/Lactose_Intolerance and i may be really dumb, but I could not find an author listed anywhere on the site for this page.

Okay, so lactose intolerance is actually an enzyme problem, a lacking in the enzyme used for metabolising or digesting lactose which we all know refers to dairy products. What some of you may not know ( i have the luxury of having a husband who studied some basics on this stuff) is that lactose is actually a carbohydrate. so the body cannot digest the carbohydrates in milk, which apart from calcium (obviously) is the most important stuff in it.

Fact: There are far more lactose intolerant adults in the world than their are non-lactose intolerant. (70% have lactose intolerance according to wikipedia).

There are two types of LI. The first is caused by weaning from milk at infancy and then rarely consuming it. A nurse told me that this is not really very common in developed countries. The second type is more common. It is the kind caused by a gastrointestinal virus. Or a tummybug, to be more understandable.

This is what our Kody had. He had gastro, which is a common known cause. Other causes are gardia, which i was told the hospital would want to test for, but they never did. They just went straight for the LI test. Gastro is more often likely to cause LI if the gastro was caused by the rotavirus. I have no idea what this is really, and a lot of the information I have found on it has been heaps confusing, so I  wont try to explain it.  I do not know if this is what caused my son's gastro or not. There was no testing and frankly, they didnt even seem to want to know what caused the gastro, as its highly contagious and was going around at the time.

 I do beleive that the rotavirus is being used in some new stem research ( stem cells made from skin cells- NOT embryonic) to duplicate any part of the human body without cancer. It has been seen as the major downfall of this research. They can reproduce any part of the human body except placenta and they are not trying to create embryo with it to find out about that one, they can create these so you can have transplants without any concern of the body rejecting organs and tissues etc, and the cells do not have the gene that causes cancer! fantastic stuff really. But that has nothing to do with what im writing this advice about.... (for those interested i read this in an online news article on ninemsn a little while ago.)

Anyhow, this second kind of LI (im not sure why its the SECOND kind as its the most common... but anyhow) can be caused by tummybugs that can PERMANANTLY disrupt the production of the enzyme needed for digesting lactose. I am tipping my son actually had LI before he had the gastro, and it was aggravated by this, but am having to really push doctors around to get anything done. Gastro can also cause TEMPORARY LI. How long it lasts for varies from weeks to years.

Is LI contagious? Absolutely not. Just like Diabetes, it is comepltely to do with enzyme production. Just a different enzyme.

A question to really bring it home to us: Does that mean even if I have LI, my baby wont necessarily have it? No, it wont automatically make your baby have i. However, there is a slightly greater chance (as my nurse put it) as there is a congential LI, which is GENETIC. This is one I did not know about. I am pushing to have myself tested, as I have found for a while now I have been getting tummy aches whenver i have milk drinks, and this is one of the reasons why I think kody may have had LI when he was born, and not from the gastro. I lived off yoghurt and milkshakes etc during my pregnancy, and put unwell feelings down to morning sickness. This may not have been the case. Unfortunately, the doctors are trying to evade having me tested for some dumb reason. a  scare fact is that until the 20th century, babies usually dd not survive this as there were no lactose free supplements or formulas.

I am not really clever enough to translate this bit properly and understandable, so i am going to COPY it from the above wikipedia address- noting the permissions clause i have alreayd included permits me to do so. You probly wont understand all fo the big words, but will get the general gist of what its saying.

  "            Without lactase(the enzyme), the lactose disaccharide (lactose carbohydrates) in many dairy products remains uncleaved and can not be absorbed through the intestinal wall into the bloodstream, so remains in the intestines. Enteral bacteria adapt to the relative abundance of this undigested sugar and their operons quickly switch over to lactose metabolism, which produces copious amounts of gas by fermentation.

This also causes a range of unpleasant abdominal symptoms, including stomach cramps, bloating, flatulence and diarrhea. As with other unabsorbed sugars (mannitol), the lactose raises the osmotic pressure of the colon contents, preventing the colon from reabsorbing water and hence causing a laxative effect to add to the excessive gas production.          "

THe main point it, its uncomfortable as hell for anyone to go through, and awful to see a child go through, It was actually causing my son to throw up a bit too, as his stomach was bloating and its so tiny, it would just force all of the milk right back out again.

The second kind of LI is sometimes called Coelic Disease. This is the temporary part. I think this may have been what my doctor was going on about before I insisted she was stupid and took my boy to the hospital lol! basically  something in the intestine called villi (if you did biology at school you might know what this is... i certainly dont know what it is!) is damaged. The villi are what produ ces the enzyme needed. apparently, LI disappers after the person has been on a GLUTEN FREE diet for as long as it takes for the villi to be repaired. this may be what my doctor meant by putting kody onto Lactose free formula for a month or so, but as i have said before, i think he has had it all along.

It is also interesting to note the rate of occurance of LI increases with age. another interesting point found that only 4% of 'european australian' were LI, while 85% of Aboriginals were found to have LI. i have found no theories relating as to why this is, but thought it was a interesting comparison. for the mummies in the US the stastics styate that for 'white americans' the rate of LI is 12% (interestingly higher than Aus!) and that African Americans are 75%. they also did some bizzare tests ( north american jews!? what has religeon got to do with it!?) that i wont include here. the one i will include however, is native americans. Why? apparently, 100% occurence. again, no explanation as to why.

now that you have read those, i strongly beleive those statistics are sadistically warped. only 24 native americans were tested. 20 african americans. funnily enough alot of the tests recorded a N/A for the amount of people tested. interesting. 160 white aussies compared to 44 aboriginals. 245 white americans were tested. such a ridiculous study. why have i included this then?

Be wary of what you read and beleive. question the reality of information.

i did not want anyone to visit that site and take those statistics as an accurate portrayal. IMHO they need to be removed from the site as it tarnishes the other 'real' information there. Please note that any information I have used from wikipedia has been backed up by conversations with child health professionals.

Now about  testing.

There are three ways. The first way is a breath test. it takesa fwe hours. I'll let you read about that on your own.

Another is an intestinal biopsy. yup. they scrape around inside. This can be done after the breath test to confirm. what a hassle. Thats probably why the most common in the third test.

Stool samples. Yes, thery really want to play with poop. this is how kody was tested. although im not looking forward to givingthem my poop. I am also dreading the thought of having them play inside my body, so i think i will stick with the poop idea.

they basically take a small sample and test for LI, it comes back showing a positive reaction ofa negative reaction. simple.

Its interesting to note that LI was first POSSIBLY talked about back in the time of hippocrates... wow thats a long time ago, and yet the first medical reports wrent written to until the late 50's. over 2000 years..... took a darn long time to work it all out i guess. i actually hada nurse tell me she suspected its what killed the dinosaurs- their young were born with LI, they malnourished and died, as did the parents. LOl what a crack up she was. Not to say that anyone is going to die of malnutrition because of LI!! theres also something that mentioned that once upon a time they thought E Coli was what produced the enzymes! scary....

Now some good info...

LI does NOT mean you cant have dairy products. each person has a different level of TOLERANCE. Some people cant have any without racting to it, for sure. but most people can afford some dairy products without any harm at all. Li doesnt mean that there is neccessarily NONE of the required enzyme, but a deficit, which accounts for the varying levels of tolerance- different people will have different levels of the enzyme. INterestingly, you are more likely to have a LI reaction to BREASTMILK than unprocessed cows milk. why? I dont know, but human milk is reported to have 9% lactose, where as cows milk has about 4.7%. low and no fat milks have higher percentages due to additives.

Unless milk solids (being a key lactose factor) has been added to margarine or butter, IT WILL NOT CONTAIN LACTOSE! thats right, your children can still have margarine and butter. Some people can tolerate NATURAL or traditional yoghurt, as it contains the lactase enzyme! UNless it has milk solids added to the ingredients... Aged cheeses (over 2 years- this can usually be found on the packet if it aged for a decent amount of time)  are more tolerable than processed cheeses, and can contain up to 10% less lactose than milk.  chocolate is a fairly big nono (unfortunately) for a lot of people with LI, as they contain a lot of milk solids.

While LI does require some diet modifucation, it is not the end of the world, ad is not as drastic as made out to be for most people.

Now some symptoms-

tummy aches

bloating

diarrheoa

gas/flatulance

vomiting

a dripping feeling of the face, or a numb kind of feeling in the cheeks.

several things lead me to beleive that my son has been LI from birth.

I drank primarily milk and ate quite a lot of cheap and nasty yoghurt (( cause it tastes good!) which contains a lot of milk solids). i had a few tummy aches and general unwell feelings but put it down to morning sickness. i still have this now though.

My son was born 6 days early weighing 2.9kg. ( i think thats roughly 5 pounds 4). He is now 5 months old and weighs 4.1 kg, despite being on formula. He is the size of a newborn and has only just grown into premmie clothing. Until we changed his formula his ribcage was exposed. No matter what we did he would not put on weight.

He had no routine, slept very poorly and only for an hour or so at a time, even at night time.

He would often be hungry an hour or so after a feed.

He often had runny poo for no reason. my eldest son has diarrheoa if he has more than 2 glasses of milk a day.

His poop got more frequent and runnier when he got gastro.

The instant he went on a LI formula he started putting on weight and his poop thickened up instantly. he also instantly developed a solid eating/playing/sleeping pattern.

Please, if you suspect anyone in your family may have LI get checked. It is not really a bad thing, but can make all the difference in the world for a hard to manage infant.

Another thing was that I kept getting told that a child as happy as mine could not be unwell. That is utter BS. Really. I have been told this from the day kody was born, and it was quite obvious to me there was something not right about him not gaining weight. Some of you older minti-ers may rembmer the incident I had with a certain doctor when Liam was about 3 months old pertaining to his weight loss. This really kept me persisting in getting Kody checked. I was not prepared for the guilt and humiliation to be thrown on me again for something I was told was fine.

You know your child better than any doctor. In australia you have the right to second opinion, even in the emergency department of you hospital. IF you think something is not right, chances are YOU ARE RIGHT. Be concerned. Worry. Hassle as many doctors as it takes for you to be satisfied there is nothing to worry about, as many as it takes for them to take you seriously ( some of us have this pathetic issue). Hassle them until YOU are comfortable. Just because they cant initially see anything there doesnt mean its not there. health professionals deal wiht worried parentsday in day out, they are not going to want to send every single child they see off to be tested for everything. If its not right persist.  Someone I know persisted and they actually detected a very early form of cancer and saved her child's life. He baby was 6 months old. She had been hassling people since the child was 9 weeks old.

Please people, persist if you are unsure. these are your childrens lives.

Anyhow, after another digression ( an important one, I feel), I hope this information has helped some of you out there to understand LI a little better, and to maybe send off a little blinking light bulb to some of you experiencing undiagnosed problems of this nature.

Ps- a tip for anyone in oz with a LI infant- ask your doctor to give you a precsription for formula. once a child has been clinically diagnosed wiith LI they can give you a script with up to 5 tins of karicare formula on it. If you been to coles recently you would know that it costs about 28$ for a tin of karicare. with this script you pay 4.90 for 5 tins of karicare de-lact if you have a health care card. 98c a tin. that saves you $140 over 5 weeks or so if you have been purchasing a karicare formula. i know i freaked out when the cheapest Lfree formula i could find cost 22. this is even cheaper than  what i was buying before, so its a bit of a perk. its about time they started doing something right with our medicare/health care system.