I can second FOP with the food issues. It's not an allergy, which is one reason allergy tests won't show it. Another reason, is that with a lot of allergies, NO test will show it. THe blood tests for gluten problems is highly specific.
The problem (if there is one) is a sensitivity reaction. For example, I am allergic to penicillin (and a number of other antibiotics). If I have it, I swell up and get itchy hives. A classic urticaria response. That's mediated by the mast cells releasing histamine after being triggered by a cascade involving B-lymphocytes.
But there are other pathways for an immune system to respond, and unless it involves B-lymphocytes, allergy tests won't show it up. The only way is trial and error. I've had this information from the top bloke in Sydney, with allergies, food sensitivities and immune responses.
The problems in diet, if they're not gluten-related, generally revolve around some of the naturally-occurring chemicals in the diet. So you might think (as I did) that my kid should be fine, we only eat healthy food made fresh form natural ingredients grown in our own backyard, no chemicals at all. But honey - even water is a chemical - H2O. EVERYTHING is a chemical. And some chemicals are worse than others. Unfortunately, the most common ones are the ones responsible for the best flavours. The elimination diet is very bland because all the really good flavours have had to be removed. However, few people are allergic to all groups. Sometimes it's just one group and you can still find plenty of food that works.
The main chemicals are the salicylates - herbs, honey, most fresh food with plenty of flavour.
Amines - bananas, chocolate.
Glutamates - a number of sauces such as soy are classic examples. Tomatoes too, I think.
Plus Sulphates (onion family) and others.
There are other nasties, especially the artificial additives (colour, flavour, preservatives) and even a couple of natural colours can be a problem. I haven't got my books handy, I'm going form memory.
We trialled the elimination diet. It's not easy, but it was worth having done it. difficult child 3 was very cooperative and would read labels carefully. We found treats that were permitted - a brand of lemonade was OK, another brand of vanilla ice cream, and home-made honeycomb were his treats. As we allowed certain foods back in we were able to add more variety. By this time he was craving flavour and this made it easier to introduce new foods.
When we tried this with difficult child 1, we found out that anything with caffeine makes him worse, and so does orange juice. Caffeine is a natural chemical but can be a nasty in its own right, because it is a natural stimulant. I've known alternative medicine fans with ADHD who refuse stims but who medicate with caffeine instead. In my opinion, it's a blunt instrument, about as scientifically valid as retrophrenology (the science of adjusting someone's personality by making bumps on their head with judicious application of a hammer - Terry Pratchett, "Discworld").
The doctors I got all this from, are NOT fringe alternative practitioners. In fact, Prof Rob Loblay, who runs the Allergy Clinic through Royal Prince Alfred Hospital in Sydney, is loathed by many in the alternative medicine community because he is so conservative and campaigns against a lot of the more alternative people and products. I've interviewed him, talked to a lot of people about him (including those that expressed dislike). My own immunologist was if anything even more conservative, and yet endorsed all that Rob was doing.
What I'm saying - it's legit.
And I've seen (and been subjected to) some weird stuff in my time.
If there were an easier way, I know Rob's clinic would be doing it. But they're not.
Marg
