Multiple sugar malabsorptions
Jan 6, 2013 16:17:00 GMT
Post by Charlie Arnold on Jan 6, 2013 16:17:00 GMT
Happy New Year everyone.
Sorry, I seemed to completely deflate at the end of last year, this seems to take so much out of us as parents and by the end of the year you feel like you have lead boots on and still no diagnosis. Oh yes, we know what it isn't but still no clearer what it is.
However, I am hopeful for us anyway, this is going to change this year.
One thing is obvious to me now. Having read lots of other peoples stories about kids similar ages to Megan, have gone through the same rigmarole of tests and have such similar symptoms. They are all struggling with several sugar malabsorptions not just one. The problem with diagnosis is that they discover one, in our case fructose and think that is the answer. Several years later, having removed that particular sugar you realise that things still aren't right and have to start all over again. In our case this has meant putting Megan back on a normal diet. I hated the idea at first but it seemed like the only way to see what was going on. Now I have done it really cautiously and with our doctors approval and she is nowhere near a normal kids sugar and fruit / vegetable load but so many of the old symptoms have come back.
So which sugar is it? there are so many different types of sugar but many of them seem to be broken down and absorbed in the small intestines, that is the section straight after the stomach. So if this area isn't functioning properly does it maybe mean that it cannot function properly with all the sugars but maybe to a greater or lesser degree. One article I found recently, quite an old one actually) implies that the different sugars may be absorbed in different sections of the small intestines but most are in the middle to later sections. I will paste the link here to the articles but also in the links section:
www.ncbi.nlm.nih.gov/pmc/articles/PMC2019782/
journals.cambridge.org/abstract_S0029665164000271
So maybe this is why we just aren't getting results after eliminating one type of sugar, the whole lot need eliminating, then gradually reintroducing one at a time in small quantities to find a safe level of each. I know the breath test timing is supposed to explain where in the intestines the reaction is occuring, ie if the level raises early it is in the stomach, at the end of the test it is later in the small intestines. But this is only going to give an answer if they are reactive enough maybe to be constantly throwing out reactions as soon as it hits that section of the intestines.
So maybe a multiple small bowel biopsy taking in all types of sugars and their stages of absorption, invasive as it may appear is the only way to get a clear answer?
All I know is Megan was negative twice on lactose breath test but is vastly better on lacto free milk. Goes manic half an hour after sucrose or high starch meals and farts for England on any sugars, fruits and vegetables. but that is not a doable diet for any child or adult long term so how do you reach a happy balanced diet unless you know to which extent each sugar is a problem. No wonder this is such a long drawn out process.
Any medical folk out there fancy a research project? there are plenty of willing guinea pigs and exhausted parents longing for an answer.....
Sorry, I seemed to completely deflate at the end of last year, this seems to take so much out of us as parents and by the end of the year you feel like you have lead boots on and still no diagnosis. Oh yes, we know what it isn't but still no clearer what it is.
However, I am hopeful for us anyway, this is going to change this year.
One thing is obvious to me now. Having read lots of other peoples stories about kids similar ages to Megan, have gone through the same rigmarole of tests and have such similar symptoms. They are all struggling with several sugar malabsorptions not just one. The problem with diagnosis is that they discover one, in our case fructose and think that is the answer. Several years later, having removed that particular sugar you realise that things still aren't right and have to start all over again. In our case this has meant putting Megan back on a normal diet. I hated the idea at first but it seemed like the only way to see what was going on. Now I have done it really cautiously and with our doctors approval and she is nowhere near a normal kids sugar and fruit / vegetable load but so many of the old symptoms have come back.
So which sugar is it? there are so many different types of sugar but many of them seem to be broken down and absorbed in the small intestines, that is the section straight after the stomach. So if this area isn't functioning properly does it maybe mean that it cannot function properly with all the sugars but maybe to a greater or lesser degree. One article I found recently, quite an old one actually) implies that the different sugars may be absorbed in different sections of the small intestines but most are in the middle to later sections. I will paste the link here to the articles but also in the links section:
www.ncbi.nlm.nih.gov/pmc/articles/PMC2019782/
journals.cambridge.org/abstract_S0029665164000271
So maybe this is why we just aren't getting results after eliminating one type of sugar, the whole lot need eliminating, then gradually reintroducing one at a time in small quantities to find a safe level of each. I know the breath test timing is supposed to explain where in the intestines the reaction is occuring, ie if the level raises early it is in the stomach, at the end of the test it is later in the small intestines. But this is only going to give an answer if they are reactive enough maybe to be constantly throwing out reactions as soon as it hits that section of the intestines.
So maybe a multiple small bowel biopsy taking in all types of sugars and their stages of absorption, invasive as it may appear is the only way to get a clear answer?
All I know is Megan was negative twice on lactose breath test but is vastly better on lacto free milk. Goes manic half an hour after sucrose or high starch meals and farts for England on any sugars, fruits and vegetables. but that is not a doable diet for any child or adult long term so how do you reach a happy balanced diet unless you know to which extent each sugar is a problem. No wonder this is such a long drawn out process.
Any medical folk out there fancy a research project? there are plenty of willing guinea pigs and exhausted parents longing for an answer.....