update Great News after 1 week of total enteral nutrition

That is wonderful news! I'm happy for your daughter!

That's super news! With the blood work to show improvement, maybe the insurance company will be more willing to provide coverage. I hope you're making progress in that battle. By the way, just for reference in case the insurance company needs to know, the Peptamen Junior is semi-elemental in the strict sense of the word, just like the Vital Jr., as it has peptides in it. I know they call it elemental on their Web site, there's more than one way of defining "elemental" and they're using a looser definition. Doesn't really matter, all that matters is it's working!

Good news! In Great Britain, getting to remission using enteral nutrition is more common. It has been shown to be as effective as prednisone in achieving remission, without the nasty side effects. It is not universally used because it can't be continued forever and for some reason, doctors don't seem to understand how to identify food intolerances and formulate a diet to avoid them once the enteral diet is finished. They cite studies that show people who test intolerant to some food, not being intolerant on re-testing and other inconsistencies that prevent them from being able to just make a fixed diagnosis and prescription. The food intolerance is not the main cause of the problem and can disappear if the problem food is avoided for a period of time. Foods that promote bacterial growth (foods that are incompletely digested and provide gut bacteria with a source of food - usually starches/sugars/polysaccherides) are often a problem because they can feed gut bacteria that the immune system has developed a reaction to and those bacteria will end up triggering immune inflammation whenever the gut becomes more permeable.

The point of diets like the SCD is that they are designed to avoid growing large numbers of the bacteria that are so common in most people's guts who eat the normal meat and potatoes kind of diet. It is those common (in normal diets) bacteria that are most likely to have provoked the immune response that is the source of the problem. It is not the foods themselves that are the problem, just the bacteria that grow as a result of eating them. And even those bacteria don't cause an immediate problem until the gut becomes porous enough to allow them to pass through the gut lining and reach immune cells.

Gut permeability is caused by several things, including stress and illness, so it is nearly impossible to avoid. That is why avoiding feeding the bacteria that cause the immune reaction is critical. I am guessing that there are a few different bacteria that can be the source of this problem and different foods are preferred by these different bacteria. This may account for some of the variability of food intolerances among us. There may also be real food allergies as well and those would be completely individual.