I was also consuming 6 cups of milk /day, which I later came to see as a danger sign, being a super-fan of certain foods ... I vaguely felt worse after my milky meals, so it seemed to be food-related.
So I did a 1-week elimination diet protocol that my allergist had given me. It was gluten free, unlike an earlier elimination diet I'd tried where I had no reaction to food challenges. This time, when I did food challenges, meaning trying a particular food species (like wheat) after the elimination diet, I got quite sick, with emotional symptoms as well.
Since the foods that made me sick included all gluten grains, I suddenly realized I might be gluten intolerant. So I went to a gastroenterologist to get tested for celiac disease. The celiac blood tests came back negative, except that I had high IgG antigliadin antibodies, and an elevated CRP and sed rate (signs of systemic inflammation). But I'd been completely gluten free for 6 weeks by that time, and almost completely gluten free for 3 months. So the test didn't necessarily mean I didn't have celiac disease.
So I got a test for gluten sensitivity from Enterolab.com. They look for celiac antibodies in a stool sample. That turned out positive - my IgA antibodies to gliadin and tissue transglutaminase were about 8 times the upper limit of normal. So I decided I probably had celiac disease.
But it wasn't only gluten grains that made me sick like this. Anything in the grain family did. I tried wheat, rye, barley, oats, rice, millet and corn that I remember, and later, even lemongrass tea. And milk, apples and oranges also made me sick.
When I quit eating those foods, it dramatically changed things for me psychologically. I became much less reactive, more emotionally stable, much less anxious. My vision calmed down from slightly hallucinatory, something that had a lot of my emotions in it, to just vision.
My joint pains also ended and my forearm tendons went back to normal. I was able to curl 50 pounds, not just frying pans, without pain. And my abdomen stopped hurting.
I started a rotation diet to prevent new food allergies from developing - meaning that foods in a particular genus were restricted to a 24-hour interval, and the intervals had a space 3 days long between them, when I didn't eat foods in that genus. Foods from the same genus have always cross-reacted for me when I've done food challenges. Also I used the info in Brostoff and Gamlin's book "Food Allergies and Food Intolerance" on cross-reactions in food intolerance, as a guide for rotating foods.
I wasn't sure that rotating my foods was necessary, so I wasn't very careful about it in the beginning. But over several years, I found that I developed reactions to foods I didn't rotate. I also eventually developed reactions to nuts and seeds that I rotated this way, so I ended up using an 8-day rotation for nuts and seeds.
For a long time after I found out about my grain allergies, I kept eating trace amounts of corn, like toothpaste sweetened with sorbitol, soy butter with maltodextrins, fructose, because I'd read that traces shouldn't matter, in Brostoff & Gamlin's book. Corn products are hard to avoid in processed food in the USA.
Then I was sick for 5 months in summer 2004, and I started to suspect that traces of corn *did* matter. I did my best to eliminate corn completely, even those tiny traces, for a week. Then I got a grain of corn and sliced it in 16 pieces with a razor blade, and ate one of the pieces, a tiny little bump on my finger. And I was severely sick for 5 days, hardly doing anything except getting out of bed now and then to take my dog into the backyard to pee.
After I took all traces of corn out of my diet I suddenly found that many other food allergies became symptomatic. I would eat a food, come down feeling very sick with a lot of back pain for 4 days ... I ate a strawberry, and became extremely itchy for a few hours, perhaps from the histamine in it. My EYEBALLS were itching, I was eating date sugar for a bit, and had terrible hives on my legs for several days before I figured out what was doing it. Probably because of my yeast allergy - dates have yeast.
After I'd eliminated the foods that made me sick, I found my "reactive hypoglycemia" - the anxious, jittery reactions to carbohydrates I'd had since I was 20 - was gone. They were very bad sometimes. I felt once like I'd stuck my finger in a light socket, after eating an orange.
My father raged a lot, he was VERY tense, like a board, a friend said after she hugged him - and he died of throat cancer. All of these can be caused by celiac disease. After I went through this, I felt I understood his muscle tension. My muscles were very tense before I quit gluten, and I was prone to rage. Celiac disease is mostly genetic, about 70% concordance rate between identical twins. And he died of throat cancer without having been a smoker, which is rare; so he might have had undiagnosed celiac disease, since there's evidence that it raises the risk of throat cancer.
So, what is going on with me?
Now and then, I encounter people who think I'm imagining all or most of it. I don't think so. I did careful blind testing on my corn allergy, and found that I do know when I've had corn vs a placebo I'm not allergic to, based only on how I feel. I did find out I was experiencing a nocebo effect as well, but it was quite mild.
I think my food reactions are allergies (immune reactions) and not food
- It only takes a few milligrams of the food to make me sick. It would be very rare for a food intolerance to be that sensitive.
- Cromolyn sodium, a mast cell stabilizer, makes my food reactions less intense. So they likely involve mast cells or basophils.
- My inhalant allergies have a similar pattern, with a very mild or unnoticeable immediate reaction, and a severe late-phase reaction. My inhalant allergy testing became negative after I was chronically exposed, just like my blood tests for IgE-mediated food allergies have been almost entirely negative, after I was chronically exposed to food allergens. So it looks like something similar must be going on.
I do have some food allergies with different symptoms that are well-known as allergy symptoms, such as yeast (stomach pain, hives) and kiwi (burning feeling, slight bleeding from my tongue). So perhaps those are the IgE-mediated allergies, and my hypersensitivity reactions have a different mechanism.
I've read a lot of research on multiple food hypersensitivity. Recently, a lot of the research has been under the guise of "non-celiac wheat sensitivity", which is associated with multiple food sensitivity in many cases. My kind of hypersensitivity seems to be something that happens to some of the people who are otherwise allergic.
I emailed one of the researchers to ask whether the NCWS they described had similar features to my own reactions - minimum amounts to cause a reaction, similar symptoms, medications that help - and they said it did.
I also asked whether NCWS, although described as likely to be a non-IgE mediated food allergy, might actually be IgE-mediated and localized in the GI tract (so it doesn't show up in skin or blood testing for IgE-mediated food allergy). They said that was also possible.
Researchers have made progress in figuring out the mechanism for NCWS. People with NCWS had serum antibodies to antigens from intestinal bacteria and signs of damage to their intestinal epithelium. So maybe the systemic symptoms from eating wheat - the foggy feeling, etc. - come from the immune reaction to these bacterial components, which leak into the blood when the intestinal epithelium is damaged by the reaction to wheat.
I wonder though, if I might have inadvertently messed up my immune system by quitting all those foods. That's because I read about the homeostatic mechanisms that regulate allergy in the gut, and I realized that when a food allergy doesn't have obvious symptoms, like mine didn't before I did elimination diets, that's probably part of a homeostatic mechanism which is trying to make the allergy go away. So making the allergy show obvious symptoms by doing an elimination diet, and then no longer eating the food, means it's no longer possible that one's body would learn to tolerate the food by being exposed to it. So one is stuck with avoiding the food for a long time.
And when one's body does what ever it does to suppress the immune reaction to a food, so there aren't obvious symptoms, those mechanisms might suppress inhalant allergic reactions as well.
I've tried gradually desensitizing myself to the foods I'm allergic to without success. But I found a case report of successful desensitization of non-celiac wheat sensitivity. Their protocol might work better.