ADHD and Celiac: You’re Gonna Get Hop-Ons

A couple of months ago, this op/ed by Dr. Richard Saul, author of the new book ADHD Does Not Exist, started making the rounds on my social networks, including in response to my sharing a post about what it’s like to have ADHD.

Last week, my feed was inundated by this article, headlined, “Researchers Who Provided Key Evidence For Gluten Sensitivity Have Thoroughly Shown That It Doesn’t Exist.” In its wake, I’ve seen a lot of jabs at people who don’t eat gluten.

They seem unrelated, but in the context of my own struggles to better understand my own ADHD (There are a few types of ADD/ADHD, but for brevity I’ll use the catchall term “ADHD” in this post) and recent conversations with friends who have celiac disease, it occurred to me that ADHD sufferers and celiac sufferers have a lot in common.

Much of the stigma surrounding mental illness and learning disabilities sends the message that the diagnosed shouldn’t get help or be open about it. But some diagnoses are too popular, too recognizable, too covered in the media, with treatments so attractive they’re more common as fun recreational drugs than as psychiatric medications. And while you don’t normally see people feigning a nut allergy, the celiac population seems to get more than its share of “me-too”s.

Here’s what ADHD is like for me. I remember being a school kid and never knowing what I’d get in trouble for next: not paying attention, or going way overboard and being too focused on something that I shouldn’t be doing, or acting out on ridiculous impulses. I remember in kindergarten my mom had a bag of little toys that I could pick from at the end of the week if I didn’t get in trouble that week––that’s how rare it was.

ADHD kids get a lot of hands waved in front of their face, a lot of “what’s wrong with you?,” a lot of “control yourself!” We get called mean, hateful, or “crazy” or “stupid” for things we didn’t even plan to do––they just happened.

60 percent of ADHD cases continue into adulthood. Now the stakes are higher: jobs, relationships, responsibilities, health. We go through life figuring out how to fake our way through a conversation even though we’ve missed half of it; pounding caffeine to try to stay on track; keeping two planners and a digital calendar and phone alerts; getting really good at making excuses for lateness or forgetfulness; trying not to let loud noises or super-bright lights cause us to forget what we’re doing entirely. Many of us use alcohol or weed to cope with the input overload or ease our social awkwardness or abate the constant fear that we’ll be disappointing people forever.

A partner or friend playfully questioning our intelligence––“It’s not that hard!” or “Just use your brain!”––might make us flip out or burst into tears for no apparent reason. ADHD women (an underdiagnosed group) have a double whammy: try combining imposter syndrome, the fear that you don’t belong among peers in your field, with the fear that one day everyone might realize how hard you have to work just to stay on the same page.

The idea that what’s wrong with you is an actual learning disability, with evidence of non-neurotypical brain activity and treatments that have been shown to work, is almost too good to be true. You meet others with ADHD and you can’t believe how similar their stories are. You laugh together about shared quirks and common ground. It’s as if life has just begun.

Then everyone else decides to weigh in.

ADHD means not living up to your potential, say the drug companies and celebrity doctors. And don’t we all want to live up to our potential? Treating ADHD will make your child the golden kid you know he can be. In an era when standardized test performance is considered the sole measure of a student’s (and teacher’s, and school’s) success––meaning kids have more busywork and less playtime than ever before––it’s a tempting promise.

Now, your learning disability, the source of so much frustration and anger in your life, is a fad, with all the backlash that entails.

Meanwhile, celiac afflicts approximately 1% of Americans. ADHD is more common, affecting approximately 5% of children and 4% of adults, but I think it’s fair to say that if the treatment for either ailment wasn’t tapping into some widespread American desire, neither would get the amount of attention that it does.

Somewhere along the way people got the idea that a gluten-free diet had health benefits, and that every reckless action or disappointing school grade is a symptom of ADHD. Now those of us who have actually been diagnosed (I was diagnosed in childhood and again in adulthood) with these illnesses are forced to justify ourselves––to both “naturalists” and skeptics who are a little trigger-happy with the “Well Actuallys”––to avoid getting lumped in with trend-followers, while the rest of the country hashes it out over whether our medicine is going to give them a flatter stomach or help them through a sixteen-hour road trip.

We have a common enemy: a cultural lust for the magic bullet.

Most Americans following a gluten-free diet are not celiac-diagnosed. Here in Madison, certainly the pseudoscience capital of the Midwest if not the entire US, it seems just about everyone is “trying to cut out” gluten, and bakeries, farm-to-table restaurants, and bistros happily comply. It’s what customers want, thanks to claims about a gluten-free diet’s ability to help you lose weight, fight thyroid issues, and improve immune health, among other supposed benefits.

But if you have celiac disease (or a medical diagnosis of a digestive disease that requires something like FODMAP), you have to actually tell your server or your host at a dinner party, “When I say gluten free, it’s for real.” Since the vast majority of people requesting gluten-free items are on some kind of diet or orthorexic-purge-du-jour rather than afflicted with a life-threatening food allergy, it’s generally not treated with the same rigor. (Did the bar sanitize the tap lines when they put that gluten-free beer on tap? Does your dinner party host, who claims she “does better” without gluten, know that you can’t eat soy sauce?)

Yes, celiac sufferers benefit from the gluten-free trend: it means more options in the health food section, more hipster locales peddling gluten-free pastries. Every minority group needs allies in the majority. But perhaps the watering-down of public understanding makes this tradeoff, at best, a wash.

Just as gluten affects celiac patients differently from the way it affects the general population, stimulants are a way of leveling the playing field for ADHD people, which is why they’re still the most established medical treatment for us. Furthermore, people with ADHD are much less likely to engage in substance abuse if their ADHD is medicated––an even more important point considering the high incidence of substance abuse among untreated ADHD patients.

If the medication is a good fit (like all psychiatric medication, it can take some trial and error, and not everyone is a good candidate for medication), it doesn’t feel like getting high; it feels like we’ve lived our whole lives with the TV stuck on a static channel and someone’s just handed us a remote control.

But if I lost my prescription and needed a new one, my pharmacist would treat me like a shoplifter, because to most of the country and especially in my neighborhood, home of the #2 party school in the country, my Adderall is just for fun.

Worse, when articles come out complaining that ADHD is overdiagnosed (that hasn’t necessarily been established; while ADHD diagnoses have increased, so have diagnoses for several illnesses including depression and autism), or when drug companies are (rightfully) criticized for aggressively marketing ADHD medication, pseudoscientific thinking rears its ugly head: the establishment can be criticized, therefore the establishment is wrong, and if the establishment is wrong, anything that goes against it must be right. And when the entire body of medical knowledge can be dismissed as “the establishment,” alternative medicine peddlers and scare-tactic fringe doctors thrive like roaches in a basement. By the way, last year Steve Novella delivered an epic smackdown of an ADHD denialist on SGU, and you can hear the clip on YouTube.

If you’re tempted by ADHD clickbait (turns out Dr. Saul actually does believe ADHD exists; he just prefers aggressively marketing medical opinions to medical drugs), please just remember that there are real, actual people whose lives have been largely shaped by this condition and who are being thrown back and forth like a volley ball between drug companies trying to sell ADHD meds, psychiatry denialists using our affliction as their golden-goose example, and, in the middle, our own doctors who are––we hope––just trying to help us.

Similarly, before you snark out about how silly the gluten-free concept is, try to keep in mind that for the people whose entire weekend is ruined when they accidentally eat something that triggers their celiac, gluten-free isn’t just a gimmick. And if you’re all about your gluten-free diet and then––whoops––order bread pudding for dessert because after a couple drinks you don’t care anymore, maybe think twice about throwing around the “gluten-free” label. Eat whatever the hell you want. You don’t need the superficial “benefits” of someone else’s disease to do that.

Julia Burke

Julia is a wine educator with an interest in labor and politics in the wine industry. She has also written about fitness and exercise science, mental health, beer, and a variety of other topics for Skepchick. She has been known to drink Amaro Montenegro with PB&J.

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  1. I have spent a lot of my life in denial that my ADHD actually still impacts my life but this about sums it up perfectly
    “We go through life figuring out how to fake our way through a conversation even though we’ve missed half of it; pounding caffeine to try to stay on track; keeping two planners and a digital calendar and phone alerts; getting really good at making excuses for lateness or forgetfulness; trying not to let loud noises or super-bright lights cause us to forget what we’re doing entirely. Many of us use alcohol or weed to cope with the input overload or ease our social awkwardness or abate the constant fear that we’ll be disappointing people forever. A partner or friend playfully questioning our intelligence––“It’s not that hard!” or “Just use your brain!”––might make us flip out or burst into tears for no apparent reason.”

    Also AdChoices thought I’d be interested in Homeopathic ADHD Remedies. Guaranteed Results! They need a smarter algorithm… What was I talking about? …

  2. Thanks for this article. It helps (ADHDer) What are your thoughts on testing? For Celiac? For ADHD?

    1. I can’t speak to testing for celiac as I don’t have it, but my understanding from my friends that do is that blood tests and bowel biopsy are the current favored diagnosis combo. As more is learned about celiac diagnoses may be able to be made earlier; one of the things I hear a lot is that people wish they’d known sooner so they can start feeling better.

      Testing for ADHD is an interesting topic; there’s some evidence, as I linked above, that brain scans can be helpful, but more research is needed. In my case, there was clearly something atypical about me as a kid, and teachers and my parents would consider various explanations; the first test I remember was around third grade, when a teacher suggested I might be having “petit mal” (or “absence”) seizures because of my inattentiveness even when the class was doing something fun or exciting. (My complementary impulsivity, which is a lot easier to spot, was sort of known as being my “personality” by that point.) I remember seeing a few doctors, ruling out things like vision and hearing issues, my mom doing a metric shit-ton of research, and eventually coming to understand that I had ADHD but not being really sure what that meant.

      As a teenager in treatment for anorexia, I mentioned offhand to my psychiatrist some joke about being a “Ritalin kid” (we tried Ritalin for me briefly but it wasn’t a great fit) and she got really excited. Turned out she had devoted a large part of her career to studying the link between EDs, especially ana, and ADHD. She gave me a diagnostic test, about 50 questions about my behaviors and history, and confirmed my diagnosis. In at least one aspect of life, I was “off the charts.” :D

      It wasn’t really until this point in my life, however, that I started to take my mental health issues seriously enough to really care. I started seeing a wonderful new psychiatrist this year, who diagnosed me again with ADHD via a similar set of questions, discussion of my history, and assessment of my other issues (the ED behaviors and anxiety, which correlate heavily with ADHD). Criticisms of the six-question ADHD questionnaires you see online usually center around how vague they can be: everyone has trouble paying attention sometimes. ADHD is an *inappropriate attention* disorder, so a proper diagnosis takes into account both inattention and hyperfocus and compares the subject’s behaviors to that of others around them. I am definitely paying attention to new research on brain scans and the like; perhaps the backlash about ADHD being overdiagnosed (at least in boys) will prompt research into better diagnostic methods.

      1. “the first test I remember was around third grade, when a teacher suggested I might be having “petit mal” (or “absence”) seizures because of my inattentiveness even when the class was doing something fun or exciting.”

        I know this comment is nearly a year old, but Oh Em Gee, are you me? That’s exactly what I was tested for in the third grade. I’m glad your parents got you diagnosed and treated as a kid. My third grade teacher insisted I had ADHD and apparently I did see doctors for it, but when the doctors wanted to do more tests to reach a determination, my parents pulled me out of my evaluation and “treated” my quirks with vitamins and music lessons. At least I saw doctors – my brother was abused by our father and didn’t get any help when he was struggling in school. He refuses to see a psychiatrist now although he clearly has ADHD and depression. I didn’t get diagnosed until I was in my mid-twenties and by then I was dealing with depression as well.

        I like your comparison of the cynicism surrounding celiac disease and ADHD. I’ve observed that increased societal awareness about any medical condition is bit of a catch 22. The upside is that previously undiagnosed people seek help and improve their lives. The trade off, which is minor in comparison to the benefit, is that hypochondriacs tend to jump on the bandwagon and your medical condition becomes sensationalized and maligned by both the media and society. Speaking of which, did you know Skeptic Magazine published an ADHD denial piece? It was a long time ago – back in in 2000 – but even so, I think the science was in back then that it was a real disorder.

        1. Thanks for sharing your story––I’m sorry to hear that your parents took you out of your evaluation process, and that your brother has internalized this attitude. I hope he comes around to getting help for his ADHD and depression; when I finally did at age 28, I was angry I hadn’t done it sooner. You can’t make someone else get therapy, but you can show them how much it can help and support them if and when they change their minds. Good luck.

          I didn’t know that about Skeptic magazine! ADHD was already being recognized by doctors as early as the mid 1990s, I know for a fact, but maybe denialism about it wasn’t as fringe as it is now. Very interesting.

  3. Three homeopathy ads, one inviting me to learn more about the benefits of Mormonism.
    I’ve found that the autism hop-ons hop right back off after they meet people who are actually affected. It’s a double insult.
    They’ll announce that they think they’re ‘a little bit autistic’ — but not like *that*. Just the that kind of autism that lets them off the hook for being selfish unaware assholes, but with none of the difficulties or challenges of actually being disabled.
    ‘Hop-ons’ is a fantastic way to describe it.

    1. Ugh, the misuse of the term “autistic” (and “aspie,” and “ADD,” and “OCD”) drives me up a wall.

  4. On the flipside as someone who is eccentric and high energy I have had many people (2 of them teachers) diagnose me as ADD. People will argue with me, oddly they can get more insistent when I tell them that I’ve been tested and found to NOT have it. Then around 5 or 10 years ago people started armchair diagnosing me as being on the autism spectrum. It seems when you are a little off beat people want you to ‘hop on’.

    1. Love those armchair diagnoses. Everyone’s a nutritionist, psychiatrist, and birth counselor.

      1. You forgot pediatrician! Everyone will give unsolicited advice about why vaccines are evil and shit like that.

        (Strictly speaking, everyone is a nutritionist, just because ‘nutritionist’ has no legal meaning. The proper term is ‘dietitian’.)

        1. I actually used the term “nutritionist” on purpose, tongue in cheek, because it’s so vague and because it is so commonly used, in line with my complaint that everyone seems to think they have this knowledge. I’m aware of the difference between that term and “dietician.” :)

  5. One of the problems seems to be that people over diagnose ADD – which doesn’t help the people who actually suffer from it – it’s become a catch phrase for any problems a kid seems to have. On the pluse side though, you do get to take some serious mind altering drugs!

    1. I mean, kids don’t really see it as a mind-altering drug experience. And neither do I––yes, technically it is altering my mind, but in a way that makes me feel more calm, capable, and focused, allowing me to actually do the things I want to do. It’s altering my mind in the same way that birth control pills alter my reproductive system or an antibiotic alters my immune system. But yeah, the overuse of the term ADHD really sucks for people who actually have it; people say, “Doesn’t everyone?” Well, no.

  6. Absolutely Ritalin or its equivalent do really help – I’d just be careful about recommending the drugs to anyone else, in particularly children. There are some nasty side effects and they are pretty powerful drugs – if a someone does use them, it should be under the guidance of a specialist. I reckon too many GP’s are to quick to write out a script for a drug which is probably in the class of Heroin or Coke in terms of it’s effects.
    People need to be able to make an informed decision – do you need to take the drugs in order to cope or not? Not sure if a kid can make those decisions especially if they are borderline.

    1. Kids aren’t able to walk into a psychiatrist’s office or pharmacy and ask for these medications; they’re prescribed after a medical analysis and discussion with the kid’s guardians. I always emphasize that people need to make decision about psychiatric treatment with a medical professional, and as I said above, not everyone with ADHD is a good candidate for medication.

  7. I’ve always worried that I’m a hop-on with gluten. I’m not coeliac. But I do have IBS, and my symptoms are consistently worse when I eat wheat than when I don’t. My GP thinks it’s a reaction to something in wheat, but not the gluten. We can’t work out what, but avoiding gluten helps, because “gluten” is labelled, while “something in wheat and maybe barley but not oats and we’re not quite sure what” isn’t.

    There are a bunch of diagnoses that are basically “you have a bunch of symptoms, we’re not quite sure why, we’re not quite sure what to do about it, but there’s a load of other people with similar symptoms”. IBS is one of those.

    At any rate, the fact that everyone is now much more careful about GF makes my life a lot easier.

  8. You forgot that Adderall and other amphetamines are also (ab)used as the academic version of steroids.

    The annoying thing is, it makes it really hard for people who really have these problems to say anything. I’m even shy to ask if the food at a restaurant has lactose in it now, because I don’t want to be associated with ‘those people’. (People who think particular food items, rather than dietary patterns as a whole, make them gain weight; people who think nutrition is some sort of medical theory of everything; etc.)

    In the case of celiac, it’s made worse because people have this confusion that “avoid gluten” means “eat only things labeled gluten-free”. The result being gluten-free olive oil, margarine, orange juice, and even gluten-free dog food, never mind that, to my knowledge, dogs don’t get celiac disease.

    1. I believe I did mention the misuse of Adderall by college students, a couple of times; it is indeed used both for fun and as a means of staying awake to study all night (or drive a long distance, which is the example I used). I could have gotten way more into the issues of what stimulants do for people and the risks of misusing Adderall and Ritalin (this is also partially in response to Ryan72) but this is already a long post and I’ll probably do another.

      I feel you on the issue of not wanting to say anything; chefs and “foodies” can be particularly cruel to people with actual food allergies because they often lump them in with all the people who are just eliminating whatever food group they’ve been told is bad for them lately. And that’s hilarious about gluten-free dog food; I’ve never even seen it but I’m not surprised.

  9. Regarding the misuse of Ritalin/Adderall etc, the guy I see for my prescription has told me many times that the drugs don’t work for people who don’t have ADD. So they are taking it but not benefiting from it at all. So there seems to a huge amount of misunderstanding regarding ADD and the relevant drugs.

    1. There certainly is; the decision to treat any illness medically is one that has to take multiple factors into consideration and it usually involves some trial and error. I don’t think I suggested that everyone with ADHD should be on medication; rather, I was pointing out the difficulties for those who are when people act like ADHD doesn’t exist or conflate the theory that it’s overdiagnosed with the accusation that no one really needs medication for it.

  10. As a psychiatrist, I have lots of thoughts on ADHD which will probably take too long to include. Often ADHD and other mental illnesses are diagnosed by primary care physicians because it is hard to find child psychiatrists. I think is a good website. There are also questionaires you can fill out. It helps to also have a friend or relative fill one out also. There is a kind of testing on the computer through some ADHD oriented treated centers that can really clarify the diagnosis. Sometimes ADHD can be confused with bipolar and vice versa. The difference is that kids with bipolar tend to do well in school sometimes and then do poorly the next few months. For people without ADHD, a stimulant acts like caffeine. So it does work to a certain extent for people without ADHD. One thing that has been debunked is that certain foods exacerbate ADHD
    It does drive me up the wall when someone claims he/she has gluten sensitivity but then doesn’t go to a GI doctor to get tested. The only doctors who will dislike the fecal calprotectin are GI docs who make most of their money off of procedures

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