Ok, I have copied and pasted a reply I gave Nicole and several others earlier this year to save typing it all again. It is hard getting an absolute diagnosis on some of these kids and can end up expensive if you have to fund it so sometimes going on your instincts is the only way to get answers. It certainly sounds as though you have made a start.
My reply covering all the angles you need to consider:
Right, where to start................. Firstly you are doing absolutely the right thing by trusting your instincts and only going with what suits your little girl and being led by what she instinctively wants to eat as she still has that inbuilt natural protective mechanism. My daughter point blank refused veg and fruit when I was weaning her and the first thing she ever ate was potato after baby rice. She had vile diarrhea that used to burn her as she started to eat more foods and serious projectile vomiting for years.
But what is it........... certainly it seems your family has a food tolerance problem that obviously has passed down the line. with HFI most due have a natural aversion so that could be your first indicator. Your safest, quickest test is a genetic test. Now there is a new one called 23andme that is cheap and uses a swab test but we don't know how accurate it is. If you don't want to draw blood from your daughter and you think your mother may have it as it is hereditary then you could get her DNA tested first, if she has it then the chances are that is what your daughter has and just keep on the HFI diet, there are several young kids here perfectly healthy on the HFI diet once their parents get the hang of it. The trouble with the DNA test is not all mutations are detected so a negative isn't absolutely a negative and you are still left guessing.
If this happens, welcome to the Grey Area Club of which I am a frustrated member............
HFI is a liver problem. However what is becoming more and more apparent is that there are alot of youngs kids out there with some sort of sugar malabsorption problem but working out which it is is the hard part. Most sugar malabsorptions occur in the small intestines (the bit after the stomach) where they don't get broken down and absorbed properly so they end up producing watery, fermenting diarhea and serious gas.
Fructose malabsorption is one of these and it seems that those that get it early on have it more severely and cope best on the HFI diet but also off wheat due to the fructans. Here they are lacking the protein enzyme that carries the fructose molecule through the villi in the small intestines to be absorbed into the blood and transported to the liver. You may then find as she grows older and her bowel and liver mature that she can tolerate more. It is only diagnosed medically by the breath test but that isn't really feasible until she is older so the only other way is the elimination diet which is more or less what you are doing. For more details on this visit my proboard
www.fructosemalabsorb.proboards.com for more info. there is a yahoo group but they tend to go a bit obsessive on Sue Shepherd etc and I don't think her low fodmap diet is any good for these children who have it badly as it has too much fructose.
The other condition worth bearing in mind and you may find your other daughters have milder versions of it is congenital sucrase-isomaltase deficiency also known as sucrose intolerance and disaccharide deficiency. This is now what I suspect my daughter has and there they cannot breakdown sucrose (and alot of fruits and veg contain sucrose as well as fructose) but also starches and sometimes lactose. that is another genetic problem but getting the gene test for that seems to be harder so sometimes the only diagnosis is again by food elimination or by trialling the enzyme replacer. And that is the good new about this condition in most countries now you can get a medicine to replace the enzyme so they can tolerate more. go on
www.csidinfo.com for more details, also there is a good yahoo group on it, I'll paste the web address for that in a minute.
health.groups.yahoo.com/group/CSID/
Anyway, hope this helps for starters. Please feel free to ask anything, there is a fount of knowledge on this board already so hopefully you will get the help you need.
So fructose ? an issue for your son - HFI of FM or is it not fructose but sucrose which is also in most fruits and veg, + rice an issue ? CSID.
Quinoa, may be inflammatory generally, are you soaking it well before cooking as that can be a problem. From what I have googled on it so far it is low fructose but there are alot of other issues with quinoa.
Hope this helps.
Have a look on my FM site too for more info.
