I have been gluten free since August 1, 2008.
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 really 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 received from so many 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 — was suffering from. 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 in for a long, very painful 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.
In 2019 and 2020, I did a few health DNA tests. I have 2 copies of the Celiac gene, and a note that I am at high risk for CD. If I wasn’t having any symptoms, all this would tell me is that I could trigger that gene to turn on later in life, but that it wasn’t really an issue now (from everything I’ve read). However, I had gone through years of symptoms, and the only thing which ever worked was adhering to a strict gluten free diet. Short of intentionally glutening myself so I can have a (presumably very expensive biopsy – and biopsies come with risks like perforation of the intestine), this is going to have to be sufficient for me to be able to say, Yes. I have Celiac Disease.
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.
Before & After going Gluten Free (click each image to view it at full-size):
From June 2009 – January 2019, I lived in far southwest Virginia, with my incredible wife. My soulmate. My person.. Our entire home was 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 darling late wife, Teresa, did not need to be gluten free, but did so very willingly, right from the start, 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 was 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 saw seen an improvement with her allergies; she hardly snored at all when she hadn’t been eating gluten — sometimes she shared something gluten-filled with my Dad when we visit my parents.)
Sadly, on January 23, 2019, my wife died due to complications from a rare and aggressive cancer called leiomyosarcoma. Much of the complications were caused by the hospital (she was admitted November 14, 2018) and prior to that, by every single surgeon we saw absolutely refusing to do ANYTHING to try to save her life.
Now, in 2020, I have my own house. I lived with my parents until I found a place, so I had several months of non-dedicated space, which is always a good way to make anyone with CD anxious!
T helped me so much with learning to live gluten free. She recreated many recipes just for me with innate skill I do not possess. We had been working on a cookbook together, and now I’m afraid that dream will never come to fruition. So much has been lost. Everyday I discover something else that I will never have, never see again.
It is also why the blog went un-updated for so long. She was diagnosed in September 2017, and we spent the next year and some going to specialist after specialist to try to save her life. She was willing to take every risk, to live with an ostomy, or two ostomies. But the surgeons kept telling her surgery would impact her quality of life, that chemo would work. Chemo never touched it. Not once.
And then to top it off, my blog was hacked sometime in 2018 when I wasn’t able to monitor it regularly. It has taken me until late 2020 to rectify that. There was so much dangerous code woven into the blog, I had to rewrite every single post one by one. Thank goodness for XAMPP that lets you run a WordPress site completely offline! This meant I could even work on my site when Cox Cable was having one of their many, many outages.
I am now in a new relationship (8 months on 25 May 2021), and my new girlfriend is also very willing to eat gluten free at home; and is learning to shop and cook gluten free. A daunting task for someone not terribly familiar with all of the complications of a gluten free diet. And all of the companies doing GF for profit and not the safety of your Celiac customers? You only make it more difficult and stressful.
But she is wonderful and perseveres. I know how lucky I am to have been found by another woman who is willing to do this. I see so many sad stories by people who are the only GF member of their household, and no one, not even their spouse, takes their medically necessary diet seriously. I just do not get people sometimes.
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 author website: http://author.grableronline.com
Masters of Business Administration in Economic Crime & Fraud Management
Completed May 2009
Bachelor of Arts in Journalism, History, and Russian
Completed May 2001