Awhile back, I attended a school event with my son and through a series of events I came to realize there’s a whole lot people do not understand about celiac disease.
I’ve written about my son’s food sensitivities before (there’s a long list here), but it just so happens that there is girl in his class that shares the big ones with him — dairy, eggs, and gluten. But her issue with gluten isn’t a sensitivity; she’s been diagnosed with celiac disease.
Because of my knowledge of food sensitivities and because these two lovelies share the big ones, I was asked to be responsible for taking them around the festival. And I take this responsibility very seriously (imagine me as a food ninja, back flips and all).
Each booth was the theme of a continent and there was food and a craft representing each region of the world. Sounds awesome until you roll up on a bowl full of couscous or the cheesecake table or Brazilian cheese balls (which are gluten free, but made with cheese and eggs).
I had prepped a bunch of food that met the requirements and matched what they were serving for my son. I also brought extra in the event other kids needed alternatives too. They had plenty to eat and were happy, but that’s not why I’m writing this post. I just want you to know that no one was deprived that day.
Oh and if at this point you’re thinking, “um, why not just bail?” Let me assure you that it did cross my mind, but I don’t believe that children should have to forgo fun on account of having food related health issues.
Anyhow, we ended up at a booth with wonderful glutenous snacks to engage in their designated craft. As anyone can imagine, managing two toddlers in a field of chaos is not free from a bit of struggle. Now here’s the classic mom line — “I turned my back for 2 seconds and…” Yup, literally 2 seconds and I look back to see a well meaning parent handing this little girl a bowl of gluten. (Spoiler: NO ONE DIED!) But you may have thought someone was about to die the way I yelled, “NO!” and whisked her away.
I politely told the other parent that she could not have that. And of course, I was asked, “Does she have an allergy?” (Totally legitimate question, by the way.) My answer was, “She has celiac disease.” What came next just about floored me and the look on my face totally revealed how concerned I was by this statement. “Oh, well she’d just have a little tummy ache.”
First thing, let’s not hate on this person or feel compelled to shame them (because if you’re reading this and have celiac disease you may very well feel that way), but instead let’s break down some fundamental flaws of that statement.
- Celiac Disease + Gluten Consumption does NOT equal “just a little tummy ache.” I’ll get to what goes down in a bit.
- You just insinuated that this disease is no big deal … to a toddler.
- You just undermined everything her parents have been teaching her to keep her safe.
- And you just dismissed the inappropriateness of your action.
Ok, number 4 is going to upset some people, but I’m going to dive in because it is that important.
As an adult, you MUST ALWAYS ask permission before giving a child food. I know food is awesome. The self proclaimed foodie writing this loves food and loves making food and loves sharing food. But we can not ignore the fact that food sensitivities, food allergies and conditions like celiac disease exist. The only way to be sure is to ask.
I know that no one wants to hurt a child — this parent was coming from a place of joy and generosity. And I know that food being harmful is a difficult concept, so let’s break down what celiac disease is and what happens to a child (or adult) who is given gluten.
What is Celiac disease?
Celiac disease is a hereditary condition in which the immune system attacks the gut lining in response to the gluten protein found in wheat, barley, rye, and other related grains. It is estimated that about 1% of the population has celiac disease, although lack of screening may mean more people actually have the condition.
It is not an allergy, which involves IgE antibodies, but it is just as serious.
What Happens When Someone with Celiac Disease Eats Gluten?
For those with celiac disease, eating gluten triggers an immune attack on the intestine causing tissue destruction and inflammation. The villi, finger-like projections of the small intestine, are destroyed. Because we rely on our villi for important enzymes and absorption of nutrients, their destruction results in malabsorption.
It’s important to note that some people with the condition never have digestive symptoms. Instead, some people present with symptoms like muscle and joint aches, brain fog, and other mental ailments.
Symptoms & Long Term Health Conditions Associated with Celiac Disease:
Abdominal Bloating & Pain
Dental Enamel Defects
Steatorrhea: Floating stools or the appearance of oil in the toilet due to fat malabsorption.
Vitamin and Mineral Deficiencies
Irritability (especially in children)
Numbness in Hands or Feet
Headache or Migraine
Iron Deficiency Anemia
Cerebellar Ataxia: May present as walking abnormally or having an abnormal posture, vomiting, strange eye movements, loss of fine motor skills.
With a gluten free diet, the gut is allowed to heal and function will be restored. If the disease is caught early, many of these symptoms are reversed or prevented altogether.
Other Diseases Associated with Celiac Disease:
Dermatitis Herpetiformis: Itchy vesicles on the elbows, knees, face, neck, torso, buttocks (sometimes the mouth) that rupture and scar.
Type 1 Diabetes: An autoimmune condition in which the body stops producing insulin as a result of extensive destruction of pancreatic beta cells. It is estimated that 3.5% of children with celiac disease have a parent with Type 1 diabetes. One study found that Type 1 diabetes may be correlated with duration of gluten consumption.
Hashimoto’s Thyroiditis: Autoimmune thyroid disease in which antibodies attack the thyroid and the patient is no longer able to produce thyroid hormone in later stages of the disease. Approximately 20% of people with celiac disease also have autoimmune thyroid disease. About 5% with autoimmune thyroid develop celiac disease.
Cancer: Gastrointestinal cancers and non-Hodgkin lymphoma are associated with celiac disease in adults. Eliminating exposure to gluten decreases the risk.
Liver Disease: Acute and chronic hepatitis, autoimmune hepatitis, and primary biliary cirrhosis have all been associated with celiac. Liver disease and cirrhosis have been found in children with celiac disease, but it is unclear if celiac was the cause.
Other Autoimmune Disease: In addition to the other conditions listed, having celiac disease is associated with an increased risk of developing Addison’s disease, Crohn’s disease, multiple sclerosis, psoriasis, ulcerative colitis, and many others.
Testing For Celiac Disease
The following blood tests can suggest the possibility of celiac disease. Biopsy of the small intestine is necessary to confirm the diagnosis as it is possible to have a false positive blood test. If you are concerned you may have celiac disease, please talk to your doctor about having the following tests done:
YOU MUST BE CURRENTLY EATING GLUTEN TO HAVE ACCURATE RESULTS.
- Tissue Transglutaminase Antibodies (tTG-IgA)
- IgA Endoymsial antibody (EMA)
- Total serum IgA
- Deamidated gliadin peptide (DGP IgA and IgG)
- Genetic testing: HLA DR3-DQ2 and DR4-DQ8 – 99% of those with celiac disease have either one or both of these genes.
Celiac disease is triggered by gluten containing products, but the symptoms and progression of the disease can be avoided by eliminating gluten from the diet. In my clinic, I recommend that patients also remove gluten containing personal care products from their home, especially with children in the house.
Oh and to finish my story. I explained everything in this post to the parent, who responded, “I had no idea.” But now they do and it was a total GI Joe moment: “Knowing is half the battle.”
If you’re reading this and have celiac disease or a food sensitivity, remember that we need to educate and create allies. I’m not saying you should go out and tell everyone about your condition, but instead, when an opportunity arises don’t shy away from sharing some facts. People are curious and I find that parents genuinely want to know. After all, we all want what is best for our kids.
If you’ve made it this far and you don’t have celiac disease or food sensitivities — congratulations! You’re an awesome human for putting this much time into educating yourself. Gold star, indeed!
If you think you may be suffering from celiac disease or gluten sensitivity, I encourage you to speak a qualified medical practitioner about testing.
As a Naturopathic Physician, I treat a wide variety of conditions, specializing in autoimmune diseases like celiac. You can schedule a complimentary 10-minute phone consultation here to learn more about our patient centered approach to celiac disease.
Navigating the food world can be tough. Please take advantage of our free guide to help you steer clear of gluten containing products.
Accuracy of serologic tests and HLA-DQ typing for diagnosing celiac disease. Hadithi M, von Blomberg BM, Crusius JB, Bloemena E, Kostense PJ, Meijer JW, Mulder CJ, Stehouwer CD, Peña AS Ann Intern Med. 2007;147(5):294.
Autoantibodies to human tissue transglutaminase identify silent coeliac disease in Type I diabetes. Seissler J, Schott M, Boms S, Wohlrab U, Ostendorf B, Morgenthaler NG, Scherbaum WA. Diabetologia. 1999;42(12):1440.
Celiac disease in children, adolescents, and young adults with autoimmune thyroid disease. Sattar N, Lazare F, Kacer M, Aguayo-Figueroa L, Desikan V, Garcia M, Lane A, Chawla A, Wilson T. J Pediatr. 2011;158(2):272.
Development of celiac disease-associated antibodies in offspring of parents with type I diabetes. Hummel M, Bonifacio E, Stern M, Dittler J, Schimmel A, Ziegler AG Diabetologia. 2000;43(8):1005
Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease. SIGEP Study Group for Autoimmune Disorders in Celiac Disease. Ventura A, MagazzùG, Greco L. Gastroenterology. 1999;117(2):297.
Prevalence of autoimmune thyroiditis in children with celiac disease and effect of gluten withdrawal. Meloni A, Mandas C, Jores RD, Congia M. J Pediatr. 2009
Range of neurologic disorders in patients with celiac disease. Zelnik N, Pacht A, Obeid R, Lerner A, Pediatrics. 2004;113(6):1672.