Dear United States Preventive Services Task Force:
I hoped, when you published your draft recommendation statement for Celiac Disease screening last May, that the feedback you received would discourage you from taking this further. It would have been far better for Celiac sufferers in the US — of whom over 80% are undiagnosed — if you had stayed silent on this topic.
Instead, you issued an “I statement” — a non-recommendation of a recommendation, that essentially said there is insufficient evidence to make a recommendation as to screening — or, implicitly, not screening — asymptomatic individuals. You said: “The USPSTF concludes that the current evidence is insufficient to assess the balance of benefits and harms of screening for celiac disease in asymptomatic persons.” In other words, you don’t know if screening is a good idea or not.
Already, science reports have misinterpreted your statement. Just look at this headline from NPR: No Need To Get Screened For Celiac Unless You Have Symptoms, Panel Says. Of course, that’s not precisely what you said. But now everyone thinks you said that, which you really should have anticipated. The misunderstanding is of consequence, because it feeds two Celiac Monsters: The phenomenon of doctors who are uncomfortable ordering Celiac tests, and anti-Celiac trolls.
As to the first Celiac Monster: This monster may be composed of well-meaning providers, but the harm they do is of monstrous consequence. These are the doctors who say “no” when an individual – symptomatic or asymptomatic – asks for a Celiac test. They say no for one of several reasons: 1) They don’t know how to order the test. 2) They wouldn’t know how to interpret the test if they ordered it. 3) They mistakenly believe that a patient must present with diarrhea to have Celiac Disease. 4) The patient is a woman.
Your statement feeds the “Dr. No” Celiac Monster by giving him cover. He skimmed the headlines on NPR and now “knows” there is no need to screen for Celiac in asymptomatic individuals. Because science. Unfortunately, most physicians were taught that Celiac symptoms = diarrhea. So they will think asymptomatic = no diarrhea. This is a widely held belief but is wrong, and underscores a major weakness of your statement, which is that science is just now starting to nail down what constitutes a Celiac symptom. All science seems to know so far is that there are many, many things that can constitute a symptom, and that diarrhea might appear in fewer than half of undiagnosed cases. So your statement is very apt to be misunderstood.
What happens when a doc says no to a Celiac test? Either 1) the person goes gluten-free anyway to alleviate her symptoms the doc failed to identify as Celiac symptoms, making it impossible for her to ever be officially diagnosed (you have to eat gluten to post positive antibodies), or 2) she stays sick, and risks pregnancy complications, certain types of cancer, low bone density, etc.
The other kind of Celiac Monster you fed is the anti-Celiac Troll. These are people whose favorite form of bigotry is hating people on gluten free diets. You probably did not know these individuals exist, or that you risked feeding them. Just so you’ll be aware, here are some of the Facebook reactions from the NPR article mentioned above (names of the idiotic redacted):
- But how can you be a self-centered ninny without some ailment to use to make everybody accommodate you?
- Here’s a tip. If you had chronic fatigue syndrome, then that went away when you found out you had fybromyalga (sic), and now want a test for this. You are a hypochondriac.
- Most of the lemmings who have gone gluten-free do so because someone on their yoga class told them to. They don’t even know what gluten is, hence the marketing bonanza for gluten-free lemonade, lettuce, meat, etc.
- What if you just want to cross your fingers for a trendy condition?
- The only disease people are clamoring to be diagnosed with to justify their gluten-free preference.
- 100% of hipsters have tested positive to celiac disease.
Why these trolls hate the gluten free is a mystery, and they are mostly irrelevant to our existence . . . UNLESS they are in the food industry. In which case, feeding these trolls makes our lives more dangerous. Because they just might be feeding us, and taking zero care not to contaminate our food.
So, please: next time you conclude that there isn’t enough evidence to make a recommendation, just don’t make a recommendation. Especially if it concerns a disease that so many people seem so eager to willfully misunderstand.
Note: This is merely a patient’s perspective on the unintended social consequences of this I Statement. For a Celiac expert perspective on the statement, read this.