Whether you’re newly diagnosed or just curious, understanding this condition is crucial to navigating food safely for those people with this condition. Stated simply, celiac disease is our body’s not-so-friendly reaction to gluten – a protein found in wheat, barley, and rye. For those of us with celiac disease, consuming even a tiny crumb of gluten can set off a cascade of unpleasant symptoms and cause real damage to our bodies. I was diagnosed with celiac disease in 2020 and ever since then I feel like I have been constantly learning. If you are new to this, you will have to learn a lot too, and this is a great place to start.
So, what is Celiac Disease?
Let’s start with what it’s not. Celiac disease is not an intolerance or allergy to gluten. Both of those things are real, but they are not celiac. Celiac disease is an autoimmune disease, meaning our immune system mistakenly attacks our body (specifically the lining of the small intestine) when gluten is ingested. This can cause inflammation and damage to the villi (tiny hair like structures) in the small intestine which makes it difficult for your body to absorb nutrients from food. When left untreated it can cause a lot of long term issues.
Symptoms
In addition to the internal damage, it is usually accompanied by a whole lot of different symptoms that depend completely on the person. This fact alone can make it particularly easy to mis-diagnose. It’s also often different for kids than adults. So all of that said, you may not experience all or any of these symptoms if you have celiac disease. But I think it’s interesting the diverse range so here’s a list:
- Diarrhea or constipation
- Fatigue
- Weight loss
- Bloating + gas
- Abdominal pain
- Nausea + vomiting
- Depression + anxiety
- Headaches/migraines
- Anemia
- Joint pain
- Missed periods
- Infertility
- Mouth ulcers
- Osteoporosis
- Itchy, blistery skin rash
- Peripheral Neuropathy (numbness or pain in your hands or feet)
- Cognitive impairment
- Reduced functioning of the spleen
While the symptoms vary from person to person the most common signs include persistent digestive issues like bloating, diarrhea, or constipation, as well as fatigue and unexplained weight loss.
So, I have Celiac Disease. What now?
Once diagnosed, the treatment for celiac disease is simple but life-changing: a strict gluten-free diet. Thankfully on a gluten free diet people are normally relieved from their symptoms and their small intestine is able to heal! The time it takes to heal will vary from person to person. As a bonus, healing can sometimes resolve dairy intolerances! Unfortunately, a gluten free diet is currently the only treatment for celiac disease and it is very important that you follow it.
Even though a gluten free diet is a huge change and brings a lot of challenges, the benefits definitely out-weigh the inconveniences. I promise that it will become second nature to read labels and prepare food that is safe for you. If you are new to all of this, I’m really glad you’re here because I can help point you in the right direction. By embracing the gluten-free lifestyle with open arms, we can take control of our health and live our best lives, one gluten-free meal at a time.
The process of being diagnosed.
If you suspect you might have celiac disease, it’s important to consult with a healthcare professional who can order tests to confirm the diagnosis before trying a gluten free diet. There must be gluten in your system for the tests to be accurate. (It’s torture, I know. But an important step in your journey.) Your health provider will order a blood test to measure a certain marker in your blood. If the test comes back high enough you will be referred to a gastroenterologist who will perform an endoscopy, which is basically sending a tube down to your small intestine through your mouth to take a biopsy. Celiac disease can only be officially diagnosed with a biopsy.
My Experience with Celiac Disease
Like I mentioned before, I was diagnosed with celiac disease in 2020. I had been on a mission with my church in the eastern United States just prior when I met someone with celiac disease for the first time. I don’t think that was a coincidence that I was introduced to this person just months before being diagnosed myself. For a few years before, I had extreme bloating after every meal, and it would often be accompanied by cramping. The craziest part was that based off of media and my friends in high school, I truly believed this was just normal. At worst, maybe a dairy intolerance. I also struggled with anxiety, another thing I thought was “normal”. I was even prescribed medication for the anxiety. It gradually got worse and worse, to the point where I would have to force myself to eat anything and I was losing weight – fast.
My Diagnosis
Coming back home to Canada from my mission trip I was very sick. My doctor eventually just sent me for a LOT of blood tests, testing for pretty much everything. I didn’t think anything would come of it, but I was miserable and deep down really hoping there was something wrong and that this wasn’t in fact normal. I got a call from my doctor a week later and she asked to see me right away. Her diagnosis – celiac disease. I don’t think I’ve ever been so relieved in my life to have what some people would call “bad news”. I was stoked that there was news! And something I could do about it! She referred me right away to a gastroenterologist who scheduled my biopsy a month out.
That was one of the hardest month of my life, because you have to keep eating gluten until your biopsy, and once I knew that it was gluten making me sick it was a huge mental struggle to continue to eat it. Maybe it’s different for other people, but it felt like I was intentionally poisoning myself, when I was so desperate to feel better. Thankfully, the gastroenterologist came to the same conclusion and I was finally able to go gluten free.
It’s been a roller coaster since then, and I’ll be honest there have been several struggles and tears. But overall, the quality of my life has improved so much and if your story looks anything like mine I just want to tell you that you are not alone. It does get easier, and better, and it’s so incredibly worth the struggle. I hope you’ll feel at home here.
If you want to learn more about celiac disease go check out the Canadian Celiac Association’s page.
Sources
https://my.clevelandclinic.org/health/diseases/14240-celiac-disease
https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/
So glad you are feeling better! I heard Celiac disease is the only autoimmune disease that has a known source and something we can do about it.