Celiac Disease is Real

Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine.–Celiac Disease Foundation

Recently, I went to dinner at a popular local restaurant with a friend.  The wait staff person, whom I will call Sam, was friendly and appeared to listen as I politely explained that I had celiac disease and needed to eat gluten free. I further added that I had not previously eaten there, so Sam pointed out all of the gluten-free items on the menu, directing my attention to several items that might be of interest to me since I also added that I was a plant-based eater. 

Later, after our food had arrived, my friend and I were deep in conversation, when Sam returned to the table to tell me that the dish I had been served was not in fact gluten-free.

“At least you only ate part of yours, unlike your friend here.”

Wait, what?  First of all, not only was that response rude to my friend, but it was also insensitive to the realities of celiac disease.  Sam then offered an apology and launched into stories of a friends who have celiac disease, but my head would not stop buzzing with worry.  Sam then added a story of a sibling with food allergies who required an epi-pen with the final words, “at least you won’t die.”  

People with celiac disease have a 2x greater risk of developing coronary artery disease, and a 4x greater risk of developing small bowel cancers.–Celiac Disease Foundation

Later, a person, who I can only assume was either a kitchen or restaurant manager, arrived at our table.  I was told that normally there was an upcharge for gluten-free items and another upcharge for vegan cheese, but since I had been wrongly served, I would not be charged any additional fees.  There was no apology, hint of remorse, or even concern in this person’s words or voice.  Meanwhile, my mind kept wondering how I was going to get through the next work day.   

When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body.–Celiac Disease Foundation

Afterwards, sharing my experience with my daughter, Maddie, she was enraged since she has worked in the restaurant industry for the past two school years.  She shared this story with her current kitchen manager as well as the rest of the staff with whom she works.  They all agreed that the restaurant’s response was inappropriate, and I should to do something, such as leave a bad review on Facebook, Yelp, or Trip Advisor.  Instead, I decided to try to increase awareness of celiac disease through writing. 

It is estimated to affect 1 in 100 people worldwide.–Celiac Disease Foundation 

I am often faced with people, especially in the restaurant industry, who do not believe that celiac disease is serious, much less real.  Perhaps, this is because so many popular diet trends include avoiding gluten and/or because gluten-free items are now so widely available and seen as healthier options.  Often, those who are avoiding gluten for health/diet purposes will still drink beer or consume products with gluten when it suits their situation.  I understand that as someone who is mostly vegan, but will, on occasion, still splurge on cheese.  Unfortunately, this can leave the impression that those of us with celiac disease can do that too.  In fact, I have had family and friends say to me, “Can’t you just take a pill before you eat it?”  If only it were that easy for me.

Ingesting small amounts of gluten, like crumbs from a cutting board or toaster, can trigger small intestine damage.–Celiac Disease Foundation

It wasn’t until the mid-forties that I was diagnosed with celiac disease.  I had been experiencing severe abdominal pain and acid reflux, as well as bloating, cramps, and other, shall we say, digestive issues.  My doctor was treating me with a variety of prescription medications.  My life became a series of timers and pills, and nothing was helping.  After several months of no improvement, he ordered a colonoscopy and an endoscopy.  When the official hospital letter came in the mail informing me that the endoscopy revealed severe damage to my small intestine, suggestive of celiac disease, I was stunned. (It also revealed a hiatal hernia, but that’s a whole other topic!)  When a later blood test confirmed this diagnosis, my life was forever changed. 

Two and one-half million Americans are undiagnosed and are at risk for long-term health complications.–Celiac Disease Foundation 

As my doctor and I talked, it was clear that I had suffered from this disease my entire life, but I had become so accustomed to the symptoms that I didn’t realize anything was wrong.  The entire diagnosis process was spread out over a few months.  Part of the protocol included strictly removing gluten from my diet for two weeks, and then seeing what happened when I re-introduced it to my diet.  Ugh! Talk about pain.  All the stomach pains/issues returned after one day of eating glutinous foods as well as a persistent headache that would not dull.  That was it!  I walked away from gluten products at that point and never looked back.  My life quality has completely changed for the better–including none of the prescriptions of the past.

Currently, the only treatment for celiac disease is lifelong adherence to a strict gluten-free diet. People living gluten-free must avoid foods with wheat, rye and barley, such as bread and beer.-Celiac Disease Foundation 

Living with celiac disease is typically most challenging when dining out.  It is important that a kitchen staff understand that, no, I won’t die immediately from consuming gluten.  However, within hours of consuming gluten, side effects begin.  Furthermore, with each consumption of gluten–which can even be found in over-the-counter medications, vitamins, lipstick, and toothpaste–I am damaging my body, in particular, my small intestine.  The more gluten I eat, the more likely I am to develop other health issues, such as Type 1 diabetes, muscular dystrophy, anemia, epilepsy, migraines, osteoporosis, shortened stature, heart disease, early on-set dementia, and intestinal cancers.

Celiac disease can develop at any age after people start eating foods or medicines that contain gluten. Left untreated, celiac disease can lead to additional serious health problems.–Celiac Disease Foundation

In the end, I sincerely wish that all restaurants, local and elsewhere, would understand that celiac disease is real; it is not made up.  When I ask for gluten-free food at a restaurant, I will happily pay the upcharge for this choice.  Additionally, I will go out of my way to let staff know that I sincerely appreciate the extra steps taken to prepare my food.  I only ask that restaurants take my request seriously.  If a mistake is made, it is best to tell the customer as soon as possible and sincerely apologize. Mistakes can happen.  However, please don’t write it off as an “at least I won’t die” moment because it will take 24-48 hours for the gluten to work its way through my system–causing unnecessary discomfort, interrupted sleep, endless rest room visits, headache, and body aches–as if I have the flu.  Additionally, at the risk of sounding dramatic, consuming gluten potentially contributes to a premature life-ending, or at the very least, life-altering disease that may have otherwise been avoided.  While celiac disease does not define me, it is part of who I am–a valid part that should be respected and honored.

For more information regarding celiac disease or for those wondering if they, or a loved one, have celiac disease, please visit the Celiac Disease Foundation at celiac.org as well as talk to your health care provider. 

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