Dealing With The Shit That Comes With Celiac Disease

Orange is not the recommended color for shit.

Brown is good. Red could mean you could have colon cancer, blood in your intestine or rectum, or that you ate beets recently. Green or white means you have bile issues of some sort, while black means you either consumed too much black licorice or are bleeding in the stomach. Orange, or even yellow, is not good.

Before she started shitting orange, she just shat a lot. My daughter was 2 1/2 years old in January 2012 when she developed a non-stop case of diarrhea. We initially blamed the daycare center; havens for stomach bugs, head colds and other maladies. (In summer 2012, ours had a case of shigella run through it.) Our pediatrician diagnosed it as, “ toddler diarrhea,” which a billable way of saying, “I have no fucking clue.” It’s not like a toddler can accurately articulate the severity of their symptoms, or where precisely something hurts inside of them. She knew that her “tummy rumbles,” that she had to poop a lot, and that her ass was raw from wiping.

The doctor wasn’t concerned. Apparently, toddler diarrhea is common in toddlers (particularly when the doctor can’t figure out what is wrong), and she wasn’t losing weight and didn’t have a fever. We cut back acids. (Have you ever watch the A&E show Intervention? It’s a lot like explaining to a two-year-old that he/she cannot have apple juice.) We took strides to make sure she wasn’t dehydrated and, through it all, she just kept shitting and shitting and shitting.

It was a day in March when the shit turned orange. Sure, every parent knows that the inside of their child’s toilet can display nearly every color of the rainbow, but the color orange even alarmed our pediatrician. She sent us to the pediatric gastroenterology clinic at our local children’s hospital. The doctor ordered blood-work, which ruled out everything life threatening, but two of the tests revealed an abnormality. It was the first time anyone mentioned the possibility of Celiac disease to us.

Celiac disease is a genetically-inherited autoimmune disorder that causes the body to attack itself when it attempts to digest gluten, the proteins found in wheat, barley and rye. It’s not an allergy or lifestyle choice. When gluten is consumed by a person with Celiac, the digestive system processes the food and leaves behind peptides, which cause the T-cells of the immune system to produce antibodies. These antibodies head right for the small intestine and attack the villi, or the hair-like fibers that catch nutrients and other particles so the intestine can absorb them and feed the body. These antibodies cause the villi to flatten, rendering the small intestine a bobsled track for food. Rather than get caught by the villi and slowly move through the intestine, the digested food heads right for the exists.

The orange mess I described above? It’s called steatorrhea, or feces with an abundant fat content. Healthy villi absorbs this fat, but flattened villi means an oily orange shit mess. Remember those potato chips made with Olestra from the mid 90s? Remember how everyone got the shits from them? Different reason, but same result. (I speak from experience. Fuck Frito-Lay and Doritos Wow!)

Celiac disease presents different symptoms for different age groups. In adults, you see joint pain, fatigue, bone loss or osteoporosis, migraines, depression, iron deficiencies, amongst other things, which make it difficult to detect. It’s not much easier in children, who may not be old enough or understand how to explain that they are pooping, bloated or irritable. It’s the physical signs you look for: chronic and/or fatty diarrhea, constipation, vomiting, stunted growth, weight loss or failure to thrive, and behavioral issues including the diagnosis of Attention Deficit Hyperactivity Disorder (ADHD).

Researchers peg the prevalence of Celiac disease in America at 0.71 percent of the population, or 1 in 141 people have Celiac disease. On top of that, 80 percent of cases remain undiagnosed. Celiac disease is like that cousin of yours: You inherit it from family, you carry it around all your life and one day it shows up and doesn’t leave. No one knows what triggers its onset. My wife’s co-worker’s father developed it in his seventies. In our case, my two-year-old was eating Ritz crackers and soiling her diapers like normal one day. The next? The orange demon appeared.

Diagnosis is a two-step process. Blood tests look for the aforementioned antibodies. Elevated numbers signal that something may be wrong; emphasis on “may.” The test is 98 percent accurate in adults, but unreliable in children. We crossed our fingers for a false positive.

After blood work comes an endoscopy; the patient is sedated and an endoscope is fed down their throat, through the stomach and into the small intestine to get a first-hand look at the villi. My wife was apprehensive about the procedure, not wanting to put our daughter through the trauma of the procedure only to have the next come back negative. She’s the mother and supposed to be protective. My fatherly pessimism was prepared for the doctor’s report: the small intestine was smooth and scalloped. They took samples of the intestinal tissue for the lab to confirm beyond a reasonable doubt, but he was certain that she had Celiac disease.

Everyone had their guesses about what was triggering the diarrhea. The pediatrician’s office stuck with the bullshit diagnosis of toddler diarrhea. The daycare aides thought she was allergic to milk. My wife and I were stumped, but pulled juice from her diet just in case. My mother-in-law, the textbook definition of nerves and anxiety, thought she had everything from Crohn’s disease to Ebola. So, when the diagnosis was definitively Celiac disease, it gave us some solace. There was something wrong, but it wasn’t life threatening. Dairy was not the issue, nor was it onchocerciasis. The problem was that we had no idea what we were dealing with. What we knew about Celiac fit on one side of an index card and we needed to become experts.

Have you ever called the toll-free number on the side of an ice cream carton (or any foodstuffs container)? You’ve seen the line that says “Questions? Comments? 1-800…,” yes? Many ice cream brands use an ingredient called “modified food starch” to thicken the base before freezing. Some modified food starches are derived from corn, making them gluten free. Those that use wheat are not. Since the origin hardly ever disclosed on the ingredient list, I have found myself on the phone with ice cream makers, snack food manufacturers, candy companies and others to ascertain the nature of their strain of the mystery ingredient.

This stuff is in everything. Bread, pizza, beer, some oats, pasta, and most cereals all have it. Some candies do; others don’t. Read the ingredients of the next food you ingest. Wheat, barley and rye all contain gluten. Malt? Sure does. Oats? Maybe, since manufacturers often process oats and wheat on the same equipment. Dairy is fine, though some people with Celiac disease develop an intolerance to milk, and some yogurts and cheeses use the aforementioned modified food starches.

I don’t want to be a fearmonger, but just because a restaurant serves gluten-free pasta does not mean it’s safe. Some restaurants cook the pasta in the same water as the conventional stuff. Others will just swap out the pasta and serve spaghetti and meatballs full of breadcrumbs, or with hunks of garlic bread wedged in the bowl. French fries seem innocent enough, except when cooked in the same oil as breaded chicken tenders or fried fish. Just prepping gluten-free food on the same surface can cause enough particle transfer to trigger an episode (more on that in a minute). One of our local pizza chains offers a gluten-free choice. The pre-made shell is shipped in its own foil pan and is prepared on a separate line located in the walk-in cooler. The manager said that it’s the only place in the store where there is no flour. It runs through the same oven but never comes in contact with gluten. That’s the difference between a Celiac ingesting gluten and, say, someone with a tree nut allergy. My daughter can sit next to me as I eat a slice of pizza without any health concern.

There’s no EpiPen or rescue medication to reverse the effects of gluten exposure. You just ride it out. (Around here, we call it being “glutened.”) It starts out with complaints about a stomachache and some sensory issues; she will become extra sensitive to sound or light. Her behavior changes; she loses the ability to focus, becomes even more irritable than normal (she inherited some of my most endearing personality traits), and vacillates between giggling, euphoric highs and sobbing sadness without provocation. She becomes restless, taking forever to fall asleep and awakening extra. And, of course, the diarrhea.

It takes about 72 hours to run its course.

Research is still years away from an effective therapy or cure. We visit the gastroenterologist for an annual check; her blood-work shows that she is healthy and healed. The only therapy is dietary change, which presents its own challenges. While most pre-packaged foods are labeled, some require extra research. Take Hershey’s chocolate bars, for instance. Only the 1.55 oz. milk chocolate bar is gluten free; other sizes are made on machines that come in contact with gluten. Big food companies like Hershey’s, Frito-Lay and General Mills make it easy, either by having descriptive websites or boldly labeling their foods. It’s tougher at Halloween because not every candymaker is as forthcoming. It’s worse at children’s birthday parties when parents load swag bags with lollipops that don’t have labels on the wrapper or candy necklaces that came in one large bag from a nameless manufacturer. I don’t blame anyone for doing that on the cheap; I just wish food labeling was better (but that’s a whole other article).

Educating others has been a necessity, even if it makes you feel like that parent every now and then. The parents of my daughter’s friends have been very understanding, going out of their way to accommodate her ( Pirate’s Booty is the elixir of the elementary school masses). We have tried with varying degrees of success with her teachers; some picked things up quicker than others. Schools have become nut-free zealots, as anaphylaxis can ruin everyone’s day, but Celiac disease and gluten is new territory for them.

The biggest adjustment comes with the cost of gluten-free food. Let’s take bread, for example. A 22 oz., 24-slice loaf of sandwich bread from my local Wegmans is $1.19. A 14.1 oz., 12-slice loaf of Schar-brand gluten-free white bread at the same store runs $5.99. The Ritz crackers my daughter loved so much? A 13.7 oz. box costs $2.69, while Glutino’s 4.4 oz. box is $3.99. (I live in Syracuse, N.Y., where the cost of living is significantly cheaper than other parts of the country.) Since dietary change is the old treatment, the difference in price is totally tax deductible. It requires quite a bit of record-keeping but I took about $1,400 last year off my income taxes.

We live in Upstate New York and are blessed with über grocer Wegmans, Trader Joe’s, and a variety of health food stores. While I am quick to quietly mock people who say they have a gluten sensitivity or order fried chicken sandwiches on gluten free rolls, I (quietly) thank them for making more products available for my kid.

All of the gluten-free bakeries, restaurants and grocery sections have not solved the biggest problem with my daughter: her damaged relationship with food. It’s probably the most difficult issue faced by parents when a young child is diagnosed. All kids are picky about what they eat and my little snowflake was a militant before she was diagnosed, a trait definitely inherited from my wife. At some point after the Celiac disease was full blown, her brain made the connection between food and the stomach pain, diarrhea and other yuck that came with being glutened. Today, my six-year-old refuses to eat meat, vegetables and most fruit, and her meals alternate between peanut butter crackers and yogurt. Rebuilding a trust with food sounds like a silly concept for adults, but it’s perfectly logical from young child’s brain. Nurturing a child’s relationship with food is important, particularly when their age is in the single digits. Getting her to open up her diet is currently our biggest struggle.

The biggest issue for Celiac parents is that nothing can be done. There is no cure and no treatment other than dietary overhaul. It’s a lifetime of explaining that “No, you can’t have this,” or “Remember, you can’t have any cake at your friend’s birthday party.” If she goes to college and wants to go to a party or order pizza with her friends, she’s the one who has to adapt. Until a cure is found, she will have to take precautions about everything she eats and constantly explain why she cannot eat take part in something.

And, like any parent, we are worrying for nothing. She is learning to self-advocate, ask questions and stick up for herself. She’s built a support system. Her friends and classmates speak up and ask if something is gluten free sometimes before she has the chance to open her mouth. She educates others about what she cannot eat and puts adults on pause about the food they are handing to her.

She’s becoming a stronger person without even realizing it.

Jared Paventi writes while sitting at his coffee table in Syracuse, N.Y. His work has appeared at Syracuse.com, NewYorkUpstate.com, USAToday.com, and a number of defunct publications. He currently ignores his food blog, blogaldente.com and his wife thinks he spends too much money on coffee and craft beer.