The road to diagnosis is a surprisingly arduous one. I’ve encountered very few people who have said they were diagnosed with Celiac Disease, or any autoimmune condition for that matter, right away. They have often struggled with unexplained symptoms for years, if not most of their lives. Many have been dismissed, brushed off, told it is all in their head, and thus unable to access appropriate treatment and resources. You may begin to wonder if it really matters whether you have the official title or not, especially if you’ve found ways to manage symptoms that are working for you. That ultimately has to be your call. For me, it was important to have that validation to know with certainty that I wasn’t imagining it, that I have Celiac disease and it really does matter that I take it seriously, and that it is reasonable to ask for accommodation to keep me safe/healthy. Having a firm answer can, at least in part, boil down to a mental health issue.
Further to this, having an official label can give us the backing we need to access appropriate treatment, garner the support we need from others in our lives, and access funding or tax breaks. There is something about knowing with certainty what is happening in our bodies that allows us to relax, exhale, regroup, and find a new path forward. Especially when the validity of our symptoms has been questioned by practitioners or loved ones, it can be so cathartic to get the official stamp on our medical files that says we officially, really really, have this diagnosis that requires the appropriate treatment. If your employment prior to diagnosis is something that is no longer safe for you to do due to gluten exposure (say in the case of a pastry chef or a drywall mudder), the official diagnosis can support a “duty to accommodate” claim with employers, or help you to access funding to retrain in a new field. Some regions are also offering tax breaks for individuals with Celiac disease (other diagnoses may be included depending on where you live). The application process for these benefits can be arduous and may not be worth the energy, depending upon the number of packaged goods you purchase that are certified gluten free. At this point, under the Canadian system you can only claim the portion of food consumed by the person in the household/family who is themself diagnosed with Celiac disease, which quite frankly is ludicrous because the other members of the family may well have the same condition but aren’t yet diagnosed, and because they all need to eat this way in order to keep the home a safe zone for the Celiac in the family (not to mention for the sanity of the chef). A significant amount of the e-book I’ve created is dedicated to learning how to make your home safe, and how to garner support from the important people in your life. If that sounds like just the resource you need, click here to learn more.
Why is it so hard to obtain a diagnosis, you ask? Mainstream medical practitioners learn infuriatingly little about autoimmune conditions in medical school, unless they choose to specialize in this area – though at present I am not aware of a specialty in autoimmune conditions as a whole, so various conditions are addressed by the specialist most interested in that body system. This is challenging for a few reasons. For one, it ignores how common cases of multiple autoimmunity (having three or more autoimmune conditions) are. It is also challenging for doctors to stay on top of new research as it is released, simply because they are so overworked. There aren’t enough hours in the day. So it is painfully common for patients with autoimmune conditions to find themselves on a rabbit trail with Dr. Google, hoping to find the answer around the next corner. If you find yourself working with a supportive, collaborative doctor who is willing to explore hunches and theories together, hang onto them! They are fabulous allies for patients like us, as are Functional Medicine practitioners who are most likely to be committed to finding the root causes of our symptoms. Functional Medicine practitioners also tend to be able to spend more time with patients during appointments, creating space to explore the factors contributing to our symptoms, and to our healing process.
If you don’t have these resources available to you locally, you may be able to find a practitioner who is able to work with you online, or you can dig deeper with the bundle that includes Your Guide to Health, a comprehensive resource that looks at the root causes of disease. I may also be able to offer some insights if you are still in the process of seeking diagnosis, or it feels like the one you’ve received doesn’t account for everything that is going on. As a person with multiple autoimmune and other related conditions myself, I’ve learned a lot over the past decade while trying to find my own answers, and it is my hope that in sharing my story and resources like this on my website, will somehow make it easier for you to get the answers you need. You’re always welcome to connect with me at support@downwiththepastryarchy.com.