You keep hearing the word gluten but aren’t quite sure what it is. You heard your elementary school BFF was recently diagnosed with something called celiac disease and you had to head to google to figure out what the heck it is.
Don’t worry, I’m here to spill the tea. Or rather, the flour.
First, what is gluten? Gluten is the protein found in wheat, barley, and rye. It is used as a filler and binder in a lot of foods (and other items). Gluten is the glue of the food world. Your chewy pizza crust? That’s gluten.
And what is celiac disease? Celiac disease is an auto-immune disease that causes the body to attack the small intestines when gluten is ingested. Approximately 1 in 100 people have celiac disease but only about a third are properly diagnosed. It is genetic and if you have a first-degree relative with it you have a higher chance of also having it. Celiac disease can develop at any age.
There are hundreds of symptoms of celiac disease and not all of them are related to your digestive track. Which makes it even harder to get a correct diagnosis because if you have say migraines but nothing else, why would your doctor think celiac disease? And some people only get a rash (dermatitis herpetiformis) while others have NO symptoms! There is no cure and the only treatment is a gluten free diet.
No wonder it can be hard to get diagnosed!
As far as I can remember my stomach issues and other symptoms started when I was in high school. I was told I was lactose intolerant. Then my mom had a colonoscopy (not how celiac is diagnosed) and she was told she had IBS. We had the same doctor so it was assumed I also had IBS. My mom has never been tested for celiac disease despite her having symptoms like mine.
I spent about 10ish years thinking I had IBS. I was getting to the point I could not stand it anymore and when I had my annual appointment I talked to my doctor about it. At the time I was part of an HMO and just given random doctors each year. When I described my symptoms to this doctor I was told I could not be having some of the symptoms at the same time. I mean, I was the one experiencing them. I think I would know.
I became discouraged and figured I would just have to suffer.
Fast forward to 2015 and I was tired of being sick all the time. I was tired of ruining vacations with Justin because I was always feeling like crap and was constantly tired. I had to always have a multitude of over-the-counter medications for all kinds of stomach issues. I made an appointment at Mayo since I moved from the HMO to a PPO. I described my issues to my doctor and he ordered blood tests, including the tTG-IgA for celiac disease.
My numbers came back off the chart, meaning a strong indication of celiac disease.
I had to go through an endoscopy to confirm. Between the blood test and endoscopy, I had to continue to eat gluten but my doctor said to only eat it at one meal. I cannot tell you how much better I felt when I even just cut back! And I started to realize how prevalent gluten is in our society. It is in everything from pancakes to toothpaste.
What surprises me most, still, is how little the food industry knows about gluten and celiac disease. I can tell when I’m going to have a good meal while eating out based on how the employees react when I tell them I can’t have gluten. Some will go above and beyond to help me be safe while others will tell me that rice/potatoes/whatever is naturally gluten free aren’t on the menu. Or say, oh well it’s vegan!
🤨 Um, gluten is vegan.
I believe anyone working in a restaurant should be educated on the top 8 allergens (milk, eggs, fish, Crustacean shellfish, tree nuts, peanuts, wheat, and soybeans). Sadly, many only seem to know about nuts. Most likely because we have all heard or read about someone eating peanut butter and going into an anaphylaxis shock. Anaphylaxis is not the only symptom of allergies but that doesn’t mean those other symptoms aren’t harmful or painful.
If I am cross-contaminated, the restaurant may not see an immediate reaction. Often times the first symptom I get is really uncomfortable bloating. And by uncomfortable I mean painful and I’ve had to unbutton pants before while at sporting events. I get migraines, become extremely sensitive to light. I can sleep for days. I have fatigue for weeks, if not months. It takes a long time to recover from glutening. Even though you can’t see it, the reaction is there and it is painful. It shortens my life expectancy. It ups my risk of other diseases and issues like small bowel cancer.
Gluten will kill me. It just chooses to do it slowly, over time.
When I was first diagnosed, I struggled with letting restaurants know I was gluten free. It was hard being “that person” who was analyzing the menu and asking a million questions. I would say I had celiac disease and get blank stares. I’ve learned it is best to say I have a gluten allergy. I know, it’s not the truth but it makes the waitstaff pay attention and hopefully, the kitchen staff takes the necessary precautions. Some will actually ask if it’s celiac disease and it makes me smile because they get it.
I want to help others understand celiac disease and gluten so those of us with celiac disease don’t have to fear eating out. Or can enjoy food at work events like our co-workers get to do. Or at family holidays. Our society revolves around food. We use food to celebrate or to commiserate. We want to travel places and experience the local cuisine.
We want to feel normal.
What do you want to know about celiac disease or gluten? Let me know in the comments!
And be sure to follow on Instagram where I sometimes post yummy, gluten free foods!