Posted 5/5/2015 12:41 AM (GMT 0)
Tam,
You ought to get a new check on that celiac. It's critical to keep it under control. I'm not surprised it took 20 years to get a diagnosis. I have a friend who was not diagnosed until she got through college. She'd go out and have pizza with friends and end up in the ER with dehydration from vomiting. My PCP put her in the hospital and had to argue forcefully with her insurance to keep her there long enough for test and fix her dehydration.
Allergy tests aren't great. The only ones that are more or less accurate are the skin tests. The blood tests run about 80%, although I've heard they're getting better. Mine said I was allergic to peanut butter, which I eat all the time with no problem.
My specific allergen found in many foods is sulfite. You can read many posts if you put that word in the search box at the top of the page. But I don't want everybody to think that's what they have. It's getting to be a fad. I did the work of keeping the food journal for a few months and that's what came up. I can get pretty ill if I'm not careful.
There are no standardized tests for sulfite sensitivity. There aren't really any tests for food sensitivities other than the food journal and "challenge testing." Don't do challenge testing at home! Doctors are now required to have their patients do this in the office. I posted a lot on this subject in the archives also.
I also have a true allergy to sunflower seeds, the throat-tightening reaction. Probably from feeding birds for 40 years. Growers get this too.
There's nothing wrong with taking a few supplements when you need them.
As for the PPIs, I was only able to get off them because I had to have the surgery, after a bad accident that shoved my stomach partly into my chest. I had had a great checkup with my GI doc a few days before and was having no episodes of the refluxing that is like burps throwing gastric contents into my throat. I still had a weak LES and fluids would flow into my esophagus when I wasn't vertical, so I had to keep them non-erosive. I was happy that things were going fine and wouldn't have had the surgery if I hadn't had to have it. Recovery wasn't fun.
Mouth irritation is often an allergy problem. The food journal will help with that. As in the case with migraines, you may have to look at what you ate a day or two or three before, not just 2 hours ago. Not all allergic reactions pop up in minutes. You can try eliminating what you ate for the last few days when you get the reaction - 1 food at a time, and stay off it for several days to see if the reaction goes away. If it doesn't, eliminate something else. This can take months but your doctor may not find anything at all, and you may have a whole list of foods seemingly not related.
A small part of my list is: bottled lemon or lime juice (but not frozen), maple syrup, corn syrup, corn starch (but not corn), gelatin, pork, molasses, brown sugar, most vinegars, wine and beer, some brands of canned soup, most bagels, bread, pizza, hard cheeses, most dried fruits, garlic, canned or boxed potatoes (but not fresh ones) .... So you see how hard it can be? When you get a list of foods you can google them with "food allergy" or "food intolerance." Don't expect to have these same food triggers. Your symptoms are different from mine. This is only an example. You might have a salicylate problem if you don't tolerate citrus or tomato sauce, or it could be MSG or any number of other things. An experienced allergist might be able to help, although I had to try 3 before I found one who knew enough about food intolerances.
Hang in there!