I have most of the symptoms you originally list. I believe I have a pancreatic deficiency, which I help out by taking enzymes. You say taking them does not help. It does help me, but it does not cure. I have had very sharp pains in the pancreas area when I eat too much protein or fat. I am on the Swank diet, which helps, and reduces both the sharp pain in the pancrease occuring (hardly occurs now) and also the other symptoms.

I had very low hematocrit when young; but now I have another disease, Porphyria, and another one besides that, Polycythemia Vera. Since getting the last one 7 years ago, I have a high hematocrit and have to have phlebotomies, and have gone to Mayo to reduce blood platelets by radiation.

Now the Porphyria is an interesting topic in relationship to your thoughts, Annesse. Porphyria is specifically caused by a low enzyme among the 8 in the hemaglobin synthesis pathway. It is thus a metabolic disease in which a low enzyme is THE known cause. It is genetic. There are several forms, each based on a low enzyme from among the 8. But the symptoms are mostly the same for all of the types except for the addition of skin problems in two types, and the existence of a separate type which is skin-only, and is the most common in America (Porphyria Cutanea Tarda).

I have very severe "RLS" but i do not call it that. It is better called Myoclonus, and the leg and back jerks are called Myoclonic seizures, although they do not affect the brain.
I have these under 95% control by taking a large dose of magnesium, which was recommended by a neuro over 20 years ago when I could not take the MS drugs which are used for such problems as spasticity and jerkiness. So I am of course interested in your supposition that this "RLS" is a part of the syndrome.

I could go on for hours, but am just saying that I find the suppositions interesting and worth investigating, but I am saying with daisy.girl, let's have it all in one post, and let's hear how the diet helps. And also need explicit statement of how one tests for this syndrome, and who does it?

I would be quite amazed if my porphyria is related to this syndrome. There is no way I could even guess about that without more information. But I do say that I have, or have had, almost all the symptoms you list, but with changes over the years from low hematocrit to high being the most obvious one.