Gloom about gluten

 
Not so long ago, a most astute colleague of mine did what the very best clinicians do: she pieced together parts of a patient’s story to make an elusive and important diagnosis. In this particular case, a young teen reported feeling crummy for several weeks. That a teenager was complaining was neither unusual nor particularly concerning. However, this young girl’s litany of woes included some vague belly pain an, more alarmingly, a new, blistery rash on her palms and soles. Abdominal upset for more than two weeks? An odd skin eruption? Hmmm.


My colleagues clinical spider sense tingled, and she confirmed her suspicions with the rash’s peculiar appearance and distribution, first by a crosscheck of a dermatology textbook (Google: dermatitis herpetiformis) and clinched the diagnosis with a blood test. Bingo! This young woman had celiac disease.

Celiac disease (aka sprue, wheat allergy, or gluten intolerance) may be one of the most common chronic conditions globally, affecting upwards of 1% of the United States population. However, recognizing this entity with its protean (or, you might pun, ’protein’) manifestations isn’t so easy.

Celiac disease arises from the inability of a child or adult to digest proteins, called glutens, contained in wheat, rye, and barley. (Oats are sometimes included on this list) Certain genetically predisposed individuals develop an autoimmune disease against their own gut tissue, with massive antibody attacks triggered by ingestion of gluten-containing materials. Quite literally, these wheat products become toxic to their intestines.

Celiac disease classically appears in an older infant or young toddler as they wean off formula or breast milk, and begin to take gluten products in their diet. Susceptible infants may develop some number of persistent or increasingly severe GI symptoms (notably without fever), including bloating, abdominal discomfort, flatulence, vomiting, or watery diarrhea. In addition, pediatric care providers are recognizing that celiac may also be a cause of constipation that doesn’t respond to the usual treatments.

And that is where history can be key: persistence of these complaints over weeks or months should be a flag. In addition, older children and adults may have a host of seeming vague and disconnected symptoms that occur with so-called ’silent, intermittent celiac disease.’ Meanwhile, internally, their intestines may be suffering reversible but mounting damage from the celiac-induced autoimmune process. Eventually, this inflammatory cascade may render a child less able to absorb key nutrients like iron or zinc. Over time, they can also become unable to digest lactose, and must avoid dairy products. Some children or teens with celiac may be brought in for medical care due to recurring canker sores, weight loss, changes in appetite, poor growth or delayed puberty. Sharp-eyed dentists may suspect the diagnosis when they encounter poorly formed dental enamel. Other celiac-related issues can include moodiness and depression that must be discerned from the usual sturm and drang of adolescence.

Blood tests that measure the ratio of antibodies to glutens can be done in any primary care setting, and allow for a preliminary diagnosis. Children, teens or adults whose results suggest the condition are customarily referred to a gastroenterologist to confirm the diagnosis definitively via intestinal biopsy. It is essential to screen the nearest relatives of individuals who have been diagnosed; up to 5 percent of first-degree family members are identified with celiac disease in this manner!

While celiac disease is not curable (yet), it is treatable. Treatment for celiac disease is a gluten-free diet, and is a lifelong commitment. Avoiding ingredients that are ubiquitous in the Western diet may be overwhelming at first, and can run up the family grocery bill. For many, that’s the hard part. The upside to the soaring rates of celiac disease is that books, websites, grocery stores and eateries have increasingly been providing gluten-free options and resources.
What’s more, we health care providers team with pediatric nutritionists and specialists to orient the family (not just the kid!) on how to go gluten free: how to shop, prepare food, and to read labels fastidiously.

And until medical science delivers us a cure of celiac disease, affected children and adults need to stick to a gluten free diet to heal up and stay well. No cheating, no sneaking. Period. Kids who stray back to wheat products-even if they feel well and are asymptomatic-risk reinjuring their gut and reigniting the vicious circle of problems that arise from it.

Kids and parents become expert at spotting the key words on ingredient lists that contain wheat, rye or barley (A tricky one is also dextrin, a form of wheat flour used to thicken certain foods, like gravy).

But even though a steep learning curve may be present, I find families ably navigate the gluten-free universe with stunning rapidity. What’s more, alternative nutrients abound, (like corn, rice, soy, chick peas, or quinoa) and offer food options that are no less delicious than their gluten counterparts.