Social media can be a wonderful thing.
When I was first diagnosed with Celiac Disease, my saving grace at learning how to live (literally) with this incurable autoimmune disease were the online support groups I came across on Facebook. From there, not only did my knowledge on living with Celiac grow, but so did the access to a much-needed support system. I knew nothing about food being gluten free versus Celiac safe, cross contamination, or that gluten can be found in the most unlikely places – like FLOSS. Even two years into this diagnosis, I’m still getting sick from various forms of cross contamination. At the time of my diagnosis, I was so desperate for answers. I went from a healthy 115 pounds to 98. My insides were literally rotting away. That’s what gluten does to a Celiac’s intestines. There are parts of my intestines that were so damaged, there is no chance of it healing. That is how severe this disease can be. So how do Celiacs manage to live each day without getting sick?
We don’t.
This is something I’ve had the hardest time coming to terms with. I was so relieved to get a diagnosis, but it was quickly overshadowed by the reality of what my life would truly be like forever. Celiac Disease is genetic, incurable, and is an autoimmune disease, which is completely different from an allergy.
“For people with this illness foods containing gluten trigger an abnormal immune response that damages the small intestine. The normal small intestine has small hair-like projections along its length known as villi which assist in the absorption of the nutrients that the body needs to stay healthy. The autoimmune response causes so much damage to these villi that they are no longer effective, thus depriving the body of needed nutrients. Furthermore, celiac disease can cause the gaps between the cells in the small intestine to open so widely that they allow toxins and gluten fragments into the bloodstream which can cause disastrous results.”
-Stanley Coren PhD, DSc, FRSC Psychology Today
I was so overwhelmed at one point, and so afraid of getting sick (think stomach flu AND food poisoning minutes after you put the smallest amount of food in your mouth), that I stopped eating. My gastroenterologist went as far as to diagnose me with an eating disorder, and set me up with a nutritionist and psychologist. My life revolved around food in an extremely negative way, and I made sure to never go anywhere unless I had the choice to leave when I wanted to. The thought of being trapped somewhere if I suddenly got sick was not a nightmare-it was something I didn’t want to relive.
About a year ago, an article was posted in one of my Celiac support groups, about a Gluten Detection Service Dog that helped her owner reduce the chances of accidentally touching or ingesting gluten. How? Like a bomb sniffing dog, this dog was trained to recognize the scent of gluten. When presented with something that contained gluten, even traces of it on silverware, the dog is able to detect it, and then gives a specific signal to her owner, indicating she’s found gluten.
I was, like many others, skeptical. But I was also desperate. In the span of two years, I was forced to rearrange my entire life in ways I still can’t believe. Even to this day, my life is still being rearranged. As much as things are looking up, I have to keep the perspective that I am living with this unpredictable disease for the rest of my life. My health can take a turn for the worst in an instant. This last July I had to have an emergency hysterectomy. Infertility is a common symptom of Celiac. Complications with reproductive organs is also common, though the reason is unknown. Though online schooling has slowly started opening doors for me in terms of a future career, I need to be realistic in how hard this disease makes it to hold down a job. I’m still medically cleared to work less than 15 hours a week. Even with having an illness that’s classified as a disability, there is no government assistance. Every day, I am looking for ways to improve my future.
When I came across Gluten Detection Service Dogs, I was hesitant. I spent an entire year doing intense research, asking questions in my support groups, and reaching out to those who had a GDSD, or trained them. One of the first articles I came across featured a doctor who echoed my same thoughts, and did his own research:
“The first successful program to develop gluten-detection dogs was started in Slovenia. My research into the matter suggested that the first gluten-detection dog which came to North America was trained in Slovenia and arrived in 2011. This dog was named Elias and is a handsome Beauceron. This is a big dog, typically between 70 and 100 pounds, used for guarding and herding. The breed is not well known outside of its native France. The dog's owner is Hollie Scott, who got Elias while she was a first-year student in the College of Veterinary Medicine at the University of Missouri. Elias was a necessary addition to Scott's life because her celiac disease is so severe that she can be ill for weeks if she eats something that has merely been sliced by a knife used previously to carve something which contained a small amount of gluten in it. Elias has provided Scott with freedom that she never had before, allowing her to even go out and eat in restaurants (which was a risky undertaking before).”
https://www.psychologytoday.com/blog/canine-corner/201409/can-we-create-gluten-detecting-service-dog
After my hysterectomy in July, I decided to move forward with getting a GDSD. So far, I’ve had an extremely “pawsitive” experience. I was lucky enough to find a Service Dog facility in my area of Virginia Beach, Virginia, PAWS Training Center. The trainers have patiently walked me through the very thorough and intense pre-training phase, and answered the millions of questions I had.
How do you even train for a dog to smell gluten? They use small liquid vials filled with the specific scent, and introduce it to the dog. Then they start putting the scent on objects/surfaces, using treats and positive reinforcement to associate with it. Commands and signals are introduced once the dog starts finding the scent on its own.
How long will it take? This depends entirely on the dog and owner doing their part of the training, as well as the tasks the dog is being trained to perform
Can you train any dog? How much does it cost? How often does take place? Am I hands-on with training, or am I taught this at a later time?
Normally, someone needing a service dog would start with a new puppy, as it’s easier to train for tasks from the start. However, my situation is unique in several ways. One, my service dog will only be used for scent, as I don’t need assistance with walking, seeing, or retrieving objects, which are some of the more common tasks. Two, I worked as a dog trainer for three years. Three, both of my dogs are certified Therapy Dogs. Having training experience, as well as two dogs who are already well behaved and trained put me at a slight advantage. The trainers were willing to meet and evaluate Maggie, who passed with flying colors. Being able to train my own dog not only saves money, but time as well. You want to have a bond with your service dog, and know that they will respond to you as you go through training phases. Last week, we got the last of our paperwork in. I needed confirmation from my doctor that I had Celiac Disease, and was being treated for it, as well as my doctor agreeing that a service dog would benefit me. Maggie needed to see her vet, and make sure all her shots were up to date.
The steps needed before training has even started has shown me how little I actually know about service dogs. It also gives me confidence in my decision. Training a service dog is not easy, simple, or quick. The trainers are not afraid to tell you no, or put their foot down, whether it comes to the dog you want to use, the training you are asking for, and who else can be involved during the training process. This tells me that the other dogs trained to detect gluten with almost 98% accuracy went through the same grueling process.
I was also enlightened on some aspects that never crossed my mind. I will have to be dressed like there’s been a chemical spill while training with Maggie. Not only will she be exposed to, and touching gluten, but so will the trainer and handler. This means we can’t train in our home. As Maggie moves forward with the scent training, we will start putting gluten on various surfaces for her to sniff out and signal. There is no higher chance of me getting accidentally glutened than while training Maggie to find gluten. Fortunately, the trainers I am working with have successfully done this before. At this point in our service dog training, they are more knowledgeable about me getting glutened than I am! But this is another aspect that gives me confidence in my choice to have a Gluten Detection Service Dog. These trainers not only recognize how harmful gluten can be to a Celiac, but they are serious and considerate when it comes to exposing me to it.
Maggie and I are at the beginning of our service dog journey. We will officially start training in just a couple of weeks! I plan on writing another article further into training. I want other Celiacs to know about this. I’m also looking into the training aspect of gluten detection, as well. I’ve seen what this has done to the lives of others living with this disease, and I can’t wait to see how Maggie changes my life. More than that, I want to be able to improve the lives of others struggling with this disease, and to improve their quality of life.
