At what point do I have to divulge my entire medical history to a total stranger just because I want to order a gluten-free meal?
In 2004, I was size 10-12, worked two jobs, and was a care-giver for someone. He died Oct 15 of that year, at the end of three months of three hurricanes which all came across my home town. In the next six months, I plumped up 40 pounds and although I held that weight, I began to grow in size until within a year, I was a size 20. I began fainting and the right side of my face and left side of my body would go numb. I drooled. My speech and thoughts were slow and slurred. My doctor at that time diagnosed me as B12 Anemic and proceeded to give me shots weekly and then pills daily with shots monthly. I improved but I began to gain poundage and my stomach gave me a great deal of pain. I belched all the time - not dainty little burps, gulping great grumbling spasms which went on for hours.
I switched doctors and for the next 5 years, I had MRI's, CTscans, different medications, blood work every six months - nothing the doctor did pinpointed the problems - which grew worse in intensity and diversity. I did stop drinking, cooking and eating out of plastic vessels. And suddenly, there appeared on the shelves - BPA-Free containers. I can use those.
In late April early May 2012, my doctor thought I'd had a mild stroke, but the $900 CTscan he ordered showed nothing - not even the cyst on the back of my head I've had since birth.
By October 2012, I could eat very little, and still I was a tight size 18W. I began symptoms which made it impossible (or at the very least - unwise) to eat at work. My doctor's Nurse Practitioner was the only one I saw for the next two months, and she prescribed medications for ulcers. By December, I was worse than I had ever been in my life. My throat felt like I was carrying stones in it, my stomach hurt all the time, I couldn't sleep unless I was curled in fetal position, the belching at night made me sit up and I'd have to sit up for hours at night until they subsided. Probably the worse thing for me personally was I was no longer able to sing. The notes wouldn't come out on the right pitch, had no breath to sustain even 4 counts, and no volume at all.
By the end of December, I called a new doctor. I sat in his office and told him my symptoms and waited for him to pat my hand and say, "Well, perhaps it is time for a vacation."
He didn't. He listened, jotted few notes, nodded his head and said, "Sounds like you have a food allergy."
Process of elimination and a very detailed eating chart - wheat came up as the culprit with every negative symptom. I googled wheat allergies and suddenly, this whole sub-culture of Gluten Sensitivities came to light. By the end of January 2013, I'd cleaned out my kitchen of anything with wheat as the ingredient (90% of everything I had) and bought only wheat-free foods. I lost only 5 pounds, but by summer, I was able to squeeze into a size 14 if it was on the loose side. The stones in my throat were exactly that - tumors - which my doctor and the specialist he referred me to treated with a medication.
When I went out for dinner, I soon knew what restaurants were ok and which ones weren't - no matter what foods they prepared. I could tell by the third bite of anything if I could eat it or not -- three bites of anything with wheat and my throat closed and I would have to run to the ladies room and throw up the weird "jelly-fish-like" glob that seemed to contain the toxins. It didn't happen often, but it happened enough that I knew the signs and lived by them.
By October 2013, I began to relax. I looked only at the ingredients of my foods, not on the notes - sometimes on the opposite side of the box or bag - about how the food was processed. After a week of a powdered creamer in my coffee and a bowl of grits for breakfast every day (seasoned with a bullion cube) I wound up in the Emergency Room, unable to stop vomiting: Anaphylaxis.
I went back through my kitchen and was shocked to find how many "gluten-free" or "wheat-free" products were prepared at facilities that processed wheat. Half of my kitchen was given away again. My doctor gave me an epipen to keep with me at all times, and I began to read everything - front and back - on every carton, box, bag and can in the supermarket. I am now in a loose 14 and aiming on getting into a size 10 by the time I show up as one of the guest authors at ALT*Con in April.
Most restaurants will listen to my requests for "no seasoning, no bread, no flour, no bullion" and respond immediately with "Oh! you're allergic to gluten!" However, a few look at me like I'm high-maintenance and hand me whatever. When my mother goes to eat with me, she goes out of her way to make it very clear that I have a toxicity to wheat and if I don't stop her, will go into glorious details of my recent trip to the ER and how she's learned how to use the epipen on me. She's like a mother bear protecting her cub. I love it, and am mortified by it at the same time. Some of my friends are not so kind - they, too, are embarrassed that I would be so insistent that my simple salad be gluten-free. I've pretty much stopped going out to dinner with some of them.
Yesterday, I went to lunch with my son and his wife and my mom at a restaurant we can all have something fitted to our particular needs. I told the waiter, "Make sure that there is no seasoning of any kind on the chicken, and no bread or wheat anywhere near the salad."
Six bites into the strawberry and chicken salad, (only three of those bites contained chicken), my throat closed and I ran to the bathroom to throw up the jelly-fish until my throat was cleared. Mom ran after me with my purse containing the epipen. Luckily (for me - I thought perhaps Mom was a little disappointed) we didn't have to use the epipen.
This was supposed to have been our Christmas get-together, and it was ruined for me. The waiter insisted he had written down 'no seasoning' and went to get the manager. She insisted there was no seasoning on the chicken and that - when questioned about the location of the kitchen's allergy-prep area - said that it had been cooked separately on a piece of tin-foil. That was unsettling.
Mom and David think I should be more vocal and let the waiter know with no uncertainty that I cannot have wheat. Steff - I love her! - gave me some very strong suggestions on how exactly to do this and some tips on what to look for when I insist on touring the kitchen! I love my family!!!
But at what point do I loose my sense of privacy? I'm a very private person (yeah right, as I type this into a blog read by lots of people). At what point do I stop going to restaurants?
At what point do I stop believing what I've read on the food containers? Last night I had gluten-free NON-GM rice and a plank of wild-raised salmon. Three bites and I'm tossing out jelly-fish again. I know I can't eat farm-raised fish, their feed is mixed with gluten to plump up the animals. (please note, I still weigh about what I weighed this time last year when I was a PLUMP size 20.)
Wheat is toxic to me.
I just read an interview of the man who wrote the Southbeach Diet. Seems he's writing a new book on Gluten-free Southbeach Diet. He said when he first wrote the book, the people who did the first part - no breads, etc., their weight loss was tremendous but he didn't realize the implications. At that time, only 1 out of 10,000 people were gluten sensitive. Today (well, as of December 2013) 1 out of 100 people in America have some form of gluten sensitivity (not allergy - that's different) from rashes to upset stomachs to distress to vomiting to anaphylaxis and death. Look at the obits; there are dozens of plump 40 and 50 year olds dying every day. Remember when our dogs and cats died from the gluten-enhanced foods coming from China? Raven, my son's wonderful dog, was one of them.
Wheat - the way it is processed now - is toxic.
At what point do we shrug off our privacy and insist that our foods be safe?