Food can nourish and bring joy but it can also be deadly to some
Watching your child sick is one of the hardest things to do as a parent. Over the course of the pandemic being home with my 14 year old daughter every day, we got a front row seat to an illness that we might not have noticed if she went to school every day.
She had symptoms and an illness that waxed and waned, flared and went away — you had to pay a lot of attention to notice it and the pandemic gave us that luxury. Throughout the course of a day, she would be hot and cold, so tired she couldn’t get off the couch, with random aches and pains. One day, she thought her wrist was broken — the pain was so bad, then her ankle, then her hip. One minute she was focused and energetic, next minute she was a stoner character from a 1990s movie — barely able to answer to her own name. One minute she was fine, the next minute she had flu like symptoms for a couple of hours then she was fine again. Without witnessing it every day, we might have just written it off as teenager grumpiness, excuses and weirdness. But it was more than that. Multiple trips to the doctor, rounds of specialists and a procedure, we now have an answer — Celiac disease. It took a biopsy to confirm that the villi in her small intestine were flattened and she wasn’t absorbing food and nutrients and hadn’t been for some time.
Celiac is an autoimmune disorder where the ingestion of gluten leads to damage of the stomach and digestive tract. Over time if not discovered, your body starts seeing all kinds of different food as gluten and reacts too— corn, soy, dairy. It also often triggers other autoimmune disorders such as Type 1 diabetes, Hashimoto’s, and Multiple sclerosis and can lead to long term health complications and an increased chance of cancer. 1% of Americans are diagnosed and many more are undiagnosed. It can often take up to ten years to get a diagnosis. Blood tests often don’t pick it up even after a doctor thinks to test for it and many people have a negative on the blood test and still have significant intestinal damage.
There’s only one cure — no gluten. Now this isn’t the take off the burger bun level of no gluten, this is a separate toaster, cutting board, colander, pasta pot, no flour in the kitchen no gluten. This is looking at labels for all the hidden sources of gluten — dextrin, rye, barley, spelt, brewers yeast — the list continues. Its determining if manufacturers also use wheat in that facility. Its knowing that oats are often grown in the same field as wheat and are cross contaminated.
We got lucky — catching celiac as a child means they haven’t had it that long and increases the chances of recovery and reversing the damage. This isn’t the case often for adults. Its hard to know how long my daughter had been celiac and getting symptoms. A couple of years ago, she had a severe gastro illness and she lost 20 pounds in a month. The doctor tested her and debated giving her a biopsy but told us celiac was unlikely. She got better for a while and then got worse again.
Increasing awareness around celiac disease is super important. There are millions of undiagnosed people out there with serious damage to their intestines, experiencing serious side effects and just don’t know what’s wrong with them. It takes on average 6–10 years to get a celiac diagnosis and you often have to fight your doctor and push hard for an endoscopy and biopsy, especially with kids. These are serious procedures and doctors don’t do them easily.
Starting now, my daughters life is going to change. Food moves from a joy and fun bonding with friends to calling ahead to restaurants to ask about their handling procedures, double checking cross contamination, asking people to swap their gloves, asking to speak to the chef, eating ahead of time in case nothing available, taking food with you everywhere. Food goes to checking labels at the store, checking them again when you get home, calling manufacturers to check their process. That’s before having to explain to friends that gluten will kill her, and no she can’t have a cheat day and a little bit won’t be okay. Its having to explain to kids in college that she can’t drink what’s in that cup, she can’t have a beer, she can’t just grab a slice.
Food goes from something fun and casual and easy to something that takes a lot of thought and energy. Food goes from a joy to something scary that can hurt you. Unfortunately, this often results in kids avoiding food completely and stopping eating because its too hard to find things they like or the thought of food creates anxiety.
In some ways, we are lucky because as a family we have a lot of experience with food issues. Dad is a type 1 diabetic so reading labels, understanding how many carbs are in something and having to eat at specific times is important. Mom has food allergies — wheat, soy, nuts, the list goes on and has been on a gluten sensitive diet for years. But now we need to step up our game and focus and take label reading to an Olympic level.
Fundamentally, our daughter is glad that she might feel better after this. There’s even a chance that her ADD that she has had since elementary school is actually brain fog caused by gluten and she can come off her meds for that. If the fatigue and pain go away, she will do what it takes to stay well. I am happy that she has had years to develop her personality — she is a confident, resilient kid that knows who she is and what she wants. She’s mature beyond her years in many ways and I trust her to make this work. I trust her that she is going to be okay. I am happy that what she has is curable and that we caught it in time.
I am writing this so that others have the knowledge to fight for a diagnosis. Celiac is more than stomach problems and often people don’t have any stomach problems at all. There are hundreds of celiac symptoms as malnutrition and absorption can shut down thousands of the body’s biochemical pathways. Neuropathies (tingling in the extremities), miscarriage and fertility, skin rashes, ulcers, osteoporosis, missed periods can all be caused by celiac. If you go along enough without a diagnosis, gluten becomes a neurotoxin in the brain, it breaks down the brain blood barrier and causes significant psychiatric symptoms. A large percentage of people diagnosed with bipolar and schizophrenia are actually discovered later to be celiac.
People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes, but so does up to 25% of the general population. If you have the gene your risk of developing celiac is higher. If you don’t have it then you definitely won’t ever get celiac disease. The disease runs in families and first-degree family members (parents, siblings, children), who have the same genotype as the family member with celiac disease, have up to a 40% risk of developing celiac disease. If you have the gene, you should have celiac antibody testing done every 2–3 years. All first degree family members should get tested.
For most children and adults, the best way to test for celiac disease is with the Tissue Transglutaminase IgA antibody, plus an IgA antibody in order to ensure that the patient generates enough of this antibody to render the celiac disease test accurate. You must be actively eating gluten for a significant amount of time before the test to get a positive result. Unfortunately there are a lot of challenges with the test and there are many false positives and negatives. My daughter had a weak positive test for years and they were positive she didn’t have it. It took an endoscopy (scope through mouth into stomach and small intestine) and a biopsy to confirm. To confirm celiac you must have a biopsy.
Once diagnosed, you should be routinely checked and followed for other autoimmune disorders. Having celiac significantly increases your likelihood of developing another disorder as your body becomes over-reactive and starts attacking itself.
My daughter is going to be fine. Its a simple fix comparatively. She doesn’t need brain surgery, she doesn’t have to take hundreds of pills a day, she’s not contagious and has to avoid other kids, she doesn’t have to spend long periods of time in the hospital. But food still holds special meaning to everything we do as humans — birthday parties, Christmas dinner, Halloween, Easter, vacations. Food is fundamental to everything we do. It connects us, it holds many of our memories, it brings joy. To lose that is a big deal and is not easy.
For more information on celiac disease, check out the Celiac Disease Foundation.