I'm glad it occurred to me to open this forum again and find others dealing with this.
Welcome, Quinault. I'm sorry to hear of your problems with your son. But thank you for confirming what I know to be reality.
Frankly, the difficulty of living in full communion with the church, in its primary liturgical celebration, is what is keeping me from Orthodoxy. There is a wonderful church full of converts I attend now and then. The Bible lessons are fascinating, and I love the Eucharistic celebration. But as it is now, I couldn't participate. The pastor, the one who gives such vivid and enlightening Bible studies, when asked about celiac parishioners, had this to say: "The body and blood of Jesus Christ could not possibly do any harm."
This is real. We are not imagining things, nor being hypochondriacs.
The pain is not the main problem. Neither is the possible public humiliation from uncontrollable events that happen after gluten ingestion. (Although, of course, that is a concern!)
The main problem is, every exposure to gluten causes damage to one's intestines. Enough damage and you could get colon cancer.
My mother died of colon cancer at age 64. I am age 60.
So, I'm in no-man's land. I believe Orthodoxy is closer to the truth than Catholicism, but it would be difficult to fully participate in. (It causes enough awkwardness to politely refuse the andiron!)
True, I could decide to stick around and educate people, but that's wearing. I'm an introvert, not a natural-born trailblazer. I'd be embarrassed to have a special fuss made for me -- to change things that radically, to change a church famed for its changelessness.
Especially since I know most people won't think it's really necessary. (After all, communion doesn't carry germs, and that's the same thing, isn't it? No, it isn't the same thing, at all.)
Look in this thread, at all the people who nonchalantly assured the original poster and others that their problem didn't really exist. The implication given, of course, is that it wouldn't exist IF the celiac patients were sincere and had enough faith -- the kind of faith that, of course, they, the responders, had. The questioner's belief in their supposed problem was seen as a reflection on them. That kind of hyperspiritual one-upmanship is what I am afraid of. No, sorry, I've been behind that Pentecostal 8-ball enough times.
I've been advised to just plunge in and trust the priest, but the common lack of awareness and especially lack of belief in (respect of?) the importance of this, makes such trust a gamble. How careful was Baruch's mother's priest with her?
It is confusing, isn't it? Like ebailey, "I find it profoundly upsetting to ask these questions of people who don't know much about Celiac disease, and react with horror at my asking, as if I don't believe that the Mysteries are the true Body and Blood as well as bread and wine." But they are both, aren't they? It seems that, in practice, Orthodoxy's interpretation of the communion mystery is much more rigid than the supposedly overly-scholastic thinking of Catholicism.