I've been on a gluten free diet for a year now, and I keep getting zinged by what I thought were micro quantities of gluten. Foods I thought were gluten free would cause a reaction and yet have no apparent similarities so I couldn't pin down another food and say, OK, I'm also intolerant to this. And this.
Sure, I knew I had a problem with chocolate. And coffee. And tea. But what do those have in common with tuna, and tomato based products and citrus fruit. And carrot cake, for goodness sake!!!
I'd had problems with all these foods, and yet I persisted in trying to fit it into the gluten intolerance model, by insisting that extreme micro quantities of cross contamination of gluten were causing my pain.
After my last episode of painful bloating after daring to try a gluten free restaurant, my older daughter tried to convince me it was psychosomatic. I insisted it couldn't be, but the next day my boss started saying that it couldn't be as simple as gluten intolerance. Maybe I was having some issues with complex proteins? I said that couldn't be, or else how could I be perfectly fine eating as much beef as I do? He told me it just wasn't reasonable to assume that ever increasingly small micro fractions of gluten could be causing a reaction this strong. I pointed out again how awful I'd been feeling before going gluten free and obviously the diet was helping. That I just wasn't being good enough about keeping ALL gluten out of my diet.
And I went back to my desk.
And began to think again. It's been a while, I guess.
What's the most obvious reaction I've been having? Tuna salad. Every time I eat tuna salad (which isn't often, I grant) I have a strong reaction. So, I googled, "tuna intolerance". Silly, huh?
I found a page about histamine intolerance. Here's one: http://www.allergyuk.org/fs_histamine.aspx
Some people have trouble with foods that contain a lot of histamine. They lack enough of the enzyme necessary to break down histamine, and the result of this is a near allergic reaction that will not show up on allergy tests! It's dose related, not incident triggered, so it isn't a true allergy. I can eat small quantities of histamine containing foods and not be affected..... but if my meal contains several foods that are high in histamine, I'll have the normal unpleasant reaction I've been dubbing my gluten reaction for a year now.
The various web pages do not agree completely on what foods to avoid, but many of them do list wheat- which is why a gluten free diet helped me so much. But there are also a lot of other foods out there that can cause me just as much trouble, and now I know why! It isn't the gluten in wheat that was bothering me. It was the histamine!
How do I know this? Well, an experiment was in order. This weekend, I bought some rye flour which has some gluten, but is very low in histamine. And I made some biscuits. And I ate one. And I've been fine. A biscuit made half of rye flour has enough gluten in it that if gluten were the problem, I'd have been in agony.
But I wasn't.
SO, it isn't gluten that's the problem! And that's a good thing! Because the gluten intolerance model just wasn't working! I was still getting hurt by my food every few weeks or so. Now all I have to do is keep in mind the longish list of histamine containing foods and make sure I don't get too much in any one meal. And I can even, theoretically, take an antihistamine if I do start to have an intolerance reaction when I push the limits and exceed my quota.
I bet I could even sneak a bite or two of PIZZA and be OK... You know, just to remember what it tastes like, instead of avoiding even touching a slice because it might transfer a molecule or two from my hands to what I was eating and contaminate me! I can't eat much pizza, though, because it has too many ingredients on the *bad* list: Yeast, wheat, tomatoes, sausage, cheese, mushrooms.... it's just chock full of histamines! On second thought, perhaps I won't risk that!
Anyway, this is my retraction and apology.
I misdiagnosed myself yet again. Of course, most people go through years of misdiagnoses with doctors before arriving at a diagnosis like this, so at least I've saved myself all those doctor bills!
Histamine Intolerance.
It explains all the holes in the gluten intolerance theory.
But this time I'm going to keep my brain awake and continue looking for more answers if there are holes in this theory. I'd been trying to make the data fit the gluten intolerance theory and that's just embarassing. In hindsight, it's obvious something else was going on.