For as long as I can remember, I have had trouble with food. I never knew what I was eating that made me sick. Two entirely different meals could have the same result. I tried eliminating various foods without resolution. Learning about MSG and how to avoid it early in life helped with headaches, and later, the more debilitating migraines, but did nothing for my stomach issues.
In 2004-05, after dealing with a lot of stress, it started getting worse. I ended up eliminating soft drinks from my diet, and, to my disappointment, garlic, onions, peppers, and other acidic foods. This helped a lot, but not completely.
In 2007, my primary physician went to a conference, and from what she learned there, deduced that gluten was my problem. She also made some other suggestions, like taking cod liver oil orally (liquid) for my skin issues. However, this information came right before a long road trip with a friend, and I just couldn’t do it. I didn’t know what gluten was, and I was already trying to eliminate a variety of other foods.
An entirely new, broad-ranging food issue was too much to handle. I’d been labeled a ‘picky eater’ for most of my life, had been getting sicker and sicker for the last several years, and was very stressed by it all. I took all the paperwork home, skimmed it without much understanding, and set it aside. I wouldn’t read it again until the following summer. My initial response was, “What’s gluten?”. It wouldn’t be until much later that I would learn that gluten was the culprit behind my food problems. Once I healed, I could eat all those things I thought were making me sick!
The following summer (July 2008), we visited my Mom’s family up in Buffalo. While we were putting a birthday party together for her Mom, my Mom was having me look up stuff that my great uncle, who probably had Celiac Disease, could safely eat. It was at this time that I really started putting two and two together, and realizing, wow, no wonder my doctor told me to do this!
So many useless diagnoses I got from different doctors over the years, none of which made anything better. . . because no one knew about gluten. I started to realize that this was not just a problem I was suffering from, but probably everyone on my Mom’s side of the family — or nearly everyone. I’d been tested for a long list of things, such as the usual Irritable Bowel, and later, even HIV because I was so tired all the time! I told them that was impossible, but they insisted on testing me for it. When that lab came back negative, that doctor decided it was Chronic Fatigue Syndrome, and that was the end of that line.
The day Mom and I headed home from Buffalo, July 31, 2008, I had what would be my last intentional eating of gluten: a ham and cheese sandwich. I was unbearably sick that evening, and we still had a long drive (about 6 hours) home ahead of us. That night I decided, that’s it. I’m going to learn what avoiding gluten means, and I’m going to be gluten free. August 1, 2008, will be my starting point.
I was very hungry on the trip home! The only things I could deduce were safe at the gas stations were things like Lays plain potato chips and Hershey bars and juice or water. But, let me tell you, it was a thousand times better than being sick all the way home — especially in the long stretches with absolutely nowhere to stop! I have had many, many an anxiety-laden road trip in my life because of that.
Once home, I still really didn’t know what to do, and there didn’t seem to be a lot of options out there, or, at least not in Roanoke, Virginia. So I ate a lot of salad. More than I’d probably eaten in my entire life to that point.
During those first two weeks, I was really grumpy and agitated. Although I wouldn’t know from personal experience, I’m guessing that detoxing from any substance that is bad for you lends itself to something similar. And I’ve heard similar experiences from many people. After two weeks, although clearly not entirely healed, I felt better than I had in years — possibly my entire life.
In October 2008, I was glutened while dining out with a friend – the spice on the steak had, for some unfathomable reason, flour as an ingredient. Despite everything I told the waitress, this slipped past. I thought I was going to die. Even though I’d only given up gluten that August, I couldn’t understand how I’d really put up with this agony for so long, and was I really going to be stuck eating salads forever?
That December, a friend flew me out to Phoenix, and he took me to all these pizza places that could handle gluten free, and to dedicated bakeries, and more. I was in food heaven! Talking to the people in the bakeries was particularly enlightening, and I learned a lot.
I talked with my friend about my experience thus far, and how confusing it had all been for me. He took me to more places, as well as several bookstores so I could get more information before I went home again. Over the course of the next year, he, along with other friends suggested I start a blog.
He reminded me that I was a writer, and since I wasn’t working on anything at the time, a blog about my experiences could be my new project. Maybe I could find a way to help people, especially people where I lived, who were just as confused as I had been over the past two years. So I did.
Although I never had the “official” CD biopsy, given family history and symptoms (particularly a rash which looks very much like Dermatitis Herpetiformis), it is likely that I have Celiac Disease, not just gluten intolerance or non-CD gluten intolerance.
Would I have the “golden standard” test (bowel biopsy) done now? Nope. In order to get a positive result, you have to be actively eating gluten. If you’ve been gluten free, this means you embark on a dangerous gluten challenge where you consume gluten for at least 3 months. Considering the damage that would do to my body, and that I would have to be out of work the entire time and for a long recovery period, I just can’t justify it.
I’ve only been accidentally glutened a few times since 8/1/2008, but each time makes me sicker than the last.
I’d like to have the DNA test for CD done, but since every test I have seen is several hundred dollars, it’s not something I can afford for several years. However, I’d like to know for sure if I have the CD gene, just in case, since I am aware that there are other health issues that are more likely to crop up after or with CD. If anyone can point me in the direction of a reliably and affordable genetic test for Celiac Disease, I’d love to hear it!
(I did try to have this test done once, but despite all the information I gave my FNP about what I wanted/needed, she ordered an antibody test, which only works if you’re actively eating gluten, because…. it looks for the antibodies that crop up after eating gluten. So now, my record there says, “NO Celiac. ANXIETY.” And no matter what I tell them; no matter what research and logical statements I mail them, they insist I received “care appropriate to my needs” and will not remove that erroneous, not to mention harmful, statement from my medical records.)
Eating gluten free has made a tremendous difference in my life and in my health. The longer I have been gluten free, the more people (especially people I haven’t seen in a long time) tell me how much better, how much healthier I look.
And it’s true. I found some photos from before I went gluten free, and the difference is remarkable. For a point of comparison, the top photo on this page was taken about 4.5-5 years after going gluten free.
Before Going Gluten Free (click each image to view it at full-size):
I currently live in far southwest Virginia, with my wife. Our entire home is gluten free, right down to the cat food, and we started off with kitchenware and small appliances which were either brand new, or had only been for gluten free use in the past.
The large appliances which came with our apartment? We cleaned them the best we could since they were not replaceable (although I did sort-of luck out when our fridge died a few years after we moved in, and our landlord replaced it with a brand new one).
My wife, T, does not need to be gluten free, but has done so very willingly because of the impact that not being gluten free would have on my health. I react to minute bits of gluten, both internally and externally, so it is much easier for both of us to be gluten free and not have to worry about cross contamination.
And even if you don’t think you’re reacting to gluten, you probably are. Don’t risk it. (And on the upside, she has seen an improvement with her allergies, and a plus for me, she hardly snores at all when she hasn’t been eating gluten — sometimes she shares something gluten-filled with my Dad when we visit my parents.)
I run a store on Zazzle where I sell gluten-free themed items (shirts, hats, bumper stickers and so forth). Sales from my store help support my being able to keep my blog on-line! Check out the “Support Us” tab for my store link!
Please be aware that I am neither a physician nor a nutritionist. I am writing about my personal experiences, and on the research that I have done, in order to help others on and/or new to the gluten free diet; to make things easier, and I hope that what I am sharing helps you in some way. However, please do not take what I write as medical advice.
My GF Wishlist: http://amzn.com/w/1F9XI22Y4NKNE
My author website: http://amandagrabler.wordpress.com
Masters of Business Administration in Economic Crime & Fraud Management
Completed May 2009
Bachelor of Arts in Journalism, History, and Russian
Completed May 2001