We’ve all heard the stories. So and so started a gluten free diet and it made their ADHD symptoms SO much better! Better focus! Better Memory! The kids are so much calmer without gluten.
It really makes you wonder, is there anything to it?
Gluten, Celiac, Gluten Sensitivity, and ADHD
Gluten is a protein that’s found in wheat, barley, and rye. It’s that little protein that wreaks havoc on the body of a person with Celiac Disease.
Celiac is an autoimmune disorder where the immune system mistakes gluten as a foreign invader and forms antibodies that attack the lining of the small intestine.
There are over 300 known symptoms associated with celiac, but most people are aware of the gastrointestinal symptoms.
Non-Celiac Gluten Sensitivity is basically all of the symptoms of Celiac but without the small intestine damage.
A while back, I was diagnosed with Celiac Disease. It was a really strange thing knowing that, even as I sat in my chair, my body was actively attacking me. I had visions of little robots eating my intestines. My ADHD brain gets a little weird and creative with it’s overthinking!
What does a Gluten Free Diet Have to Do With ADHD?
Nothing. And Everything. It’s complicated, really…
I know, I know. My momma always said “that’s clear as mud.” Yeah…
In a direct sense, the two don’t have anything to do with each other. There’s nothing about gluten that would impact ADHD directly. Going Gluten free, for most people with ADHD, is kinda pointless.
Then why does it help some ADHDers to go gluten free?
Well, indirectly it can impact ADHD symptoms in a BIG way.
Celiac, Gluten Sensitivity, and ADHD May GO Together…
Only 1% of the general population has Celiac Disease. Non-Celiac Gluten Sensitivity (NCGS) is not as well studied but we think it makes up around 6% of the general pop.
What’s weird though, like really weird, is it appears as if the ADHD community may be more likely to experience Celiac and/or NCGS.
Studies are limited, but one studied the prevalence of Celiac in people with ADHD and found it made up 15% of study participants with ADHD. That’s WELL above the general population.
Not all studies have shown this strong connection between the two, so more research is definitely needed.
Celiac, Non-Celiac Gluten Sensitivity, and ADHD Symptoms in Common
While most everyone is familiar with the gastrointestinal symptoms of Celiac, few people are aware of the cognitive symptoms or other ways it impacts your emotions, physical body, and brain function.
I know they were for me. Here’s a simplified breakdown of a few symptoms similarities:
- Being Forgetful and struggling with memory
- Having a hard time maintaining attention
- Feeling Overwhelmed and Anxious
- Struggling to get motivated
- Fidgety, hyper, overactive
- And/Or lethargic, chronic fatigue
- Feeling irritable and having behavioral issues
Undiagnosed, Misdiagnosed: Celiac, NCGS, and ADHD
In the studies that have shown a link, the people who responded to a gluten free diet, were the ones with Celiac Disease or NCGS. Some people have had a total resolution of symptoms, finding out that they never actually had ADHD. It was Celiac or NCGS.
Others, like me, have both and a gluten free diet helps the ADHD-like symptoms but doesn’t fix them. When I started a gluten free diet so that my body would stop eating itself, many of my symptoms improved some.
My brain fog lightened. My memory improved a bit. I was more motivated than before. I didn’t hate life and spend every second of my spare time in bed anymore.
But I was still forgetful (maybe a bit less so). I still zoned out on people in conversation (even when I was the one talking). I still lost anything I touched. And I was still behind on everything.
But I did feel noticeably better (after a few months) on a gluten free diet. It was after that when I was diagnosed with ADHD. Starting stimulants was the final piece in giving me the tools to overcome (or at least better work with) the rest of those symptoms.
What Does that Mean for People Thinking About a Gluten Free Diet?
This part is my personal opinion, so feel free to do with it as you will.
When What You’ve Already Tried is Working…
If you’ve already started a gluten free diet and it’s pretty much fixed the ADHD symptoms you have– You may already have your answer.
You may have Celiac or NCGS (but if you’re on a gluten free diet already, the path to getting diagnosed is more complicated). You may not have ADHD.
If you have ADHD and your medication has pretty much fixed the ADHD symptoms you have– You probably already have your answer. It’s probably ADHD and Gluten Free is not likely to be terribly helpful.
When Your Current Treatment Isn’t Cutting it…
If you’ve been diagnosed with ADHD (and treated) and your symptoms just aren’t improving, it might be worth it to you to explore a possible role of Celiac or NCGS.
If you’ve been diagnosed with Celiac or NCGS and the gluten free diet has helped, but the cognitive stuff is still a major struggle, it might be worth exploring a possible role of ADHD.
You see, you could have ADHD. You could have Celiac or NCGS instead. Or You could have both.
Since apparently it’s a bit more common together. Lucky us 😒
Regardless of any of this, if you have a parent or sibling who’s been diagnosed with Celiac–go ahead and get tested unless you’re already gluten free. Celiac runs in families the way ADHD runs in families (though to a lesser degree).
Should YOU Do the Gluten Free Diet for Your ADHD Symptoms?
This part is a mix of fact and opinion but I’ll try to make sure you know what’s what. And remember, when it comes to my opinion, I’m not a doctor and none of this should be taken as medical advice. Talk to your doctor 😉
Ultimately what you eat is up to you, but you know that. These are the factors that can be helpful to consider when you’re pondering this question (and hopefully discussing it with your doctor).
A Gluten Free Diet Can be Dangerous if Not Done Right
This part is a fact. MOST of the time, when you cut out an entire category of food, it can be dangerous because it may lead to you lacking key nutrients.
Going gluten free is no different. Gluten is found in breads and pastas (as the obvious places but it’s SO much more covert than that). Those foods are often a major source of certain vitamins and minerals that are harder for us to get enough of elsewhere.
For that reason, and a few others more related to the damage in my intestines, I have to have regular blood work done to monitor vitamin deficiencies.
Cutting out gluten often means cutting out important nutrients that you need to monitor and make sure you are getting enough through other means.
When you have Celiac, you basically HAVE to cut it out. But if you haven’t been diagnosed, you might consider pursuing diagnosis before just cutting it out.
The Right Diagnosis May Be REALLY Important
Another fact here…
If you have NCGS, you might be able to get away with just limiting your gluten intake or not having to worry about cross contamination.
But if you have Celiac, your gluten free lifestyle has to be militant. The amount of gluten it takes to cause your body to attack itself is so small you need a microscope to see it.
If you have Celiac Disease but aren’t diligent about even the minuscule amounts of gluten, you’re at an increased risk for other autoimmune disorders and certain types of cancers (EVEN if you DON’T experience symptoms).
We’re talking so diligent that flour in the air from baking the day before renders anything made in that kitchen today off limits for someone with Celiac.
To maintain that level of gluten avoidance, I needed confirmation of the diagnosis. I knew if I didn’t have it (even though my Gastrointerologist was pretty confident that’s what it was), in a year or two, I’d start relaxing. Be less diligent. Most people are like that.
And meanwhile get more and more malnourished because that’s what Celiac does.
Maintaining a Gluten Free Diet is Really Hard
As you probably guessed, this one is my opinion. Some agree, some disagree. Personally, I think it sucks.
Especially since it’s life long. There is no, “later, when I really really want it I’ll just have a bite…” When that hit me, I got really angry and a bit depressed. It took some time after that to come to terms with the whole Celiac thing.
Going out with friends is different (especially if you have Celiac). I live in a big city and one that’s more gluten friendly than others but my options are still limited.
Why? Because I can’t do gluten friendly. It’s militantly gluten free or I’m sick for weeks.
Going out for a friend’s birthday? Either they pick one of the few restaurants you can eat at or you sit there watching people eat. Crunched for time? Take out (even at restaurants that are really good at gluten free) is super risky.
The easy, naturally gluten free meals get old fast. Currently, I’m sick of rice, quinoa, corn tortillas, gluten free bread, salads, and anything to do with eggs.
And the gluten free substitutes for bread or pasta taste terrible.
Except Shar Brand. It’s the only one I’ve tried that doesn’t end up tasting like you have sand in your mouth. Even my husband (who hates everything gluten free) likes the Shar Ciabatta rolls (in case you need to know a good one.)
God forbid you are also a vegetarian (which I am because meat is a sensory nightmare for me). Most of the non-meat sources of protein I used to eat are now off limits due to gluten.
On a Gluten Free Diet, A Noticeable Difference in Symptoms May Take Time
My dad was diagnosed with Celiac when I was 9. He almost died before his doctors found it. But once he was diagnosed and started a gluten free diet, his symptoms were drastically improved in less than a week.
So quick relief is a possibility.
But me? I wasn’t as sick as my dad (thanks to a faster diagnosis). But it took almost 3 months on a gluten free diet for me to start feeling better.
My sister was diagnosed with Celiac recently and it took her almost 3 months to feel better, too.
So quick relief definitely isn’t guaranteed.
Just know that if you decide to start taking gluten out of your diet, it may be a while before you experience anything, IF you experience anything.
There are just a few things to know, but there are many more.
Start with a Diagnosis or Gluten Free Diet?
If you can’t tell by now, I’m all about getting the right diagnosis. I think it’s important so that you know that the efforts you are making are worth it.
To me, it’s the healthiest option and it’s what the experts recommend.
And yet, I know that this option can sometimes be difficult. Many doctors are misinformed about all three: Celiac, Non-Celiac Gluten Sensitivity, and ADHD.
I was lucky to get some great ADHD doctors and didn’t personally have to experience much misinformation with that diagnosis.
Celiac was a different story, though.
You know how some doctors insist that if you’re sitting still and didn’t fail out of elementary school, there’s no way you have ADHD?
Well, some doctors think that you can’t have Celiac Disease unless you are seriously underweight or that the blood test and endoscopy for Celiac WILL. BE. NEGATIVE. if you are already on a gluten free diet (even if you really do have Celiac).
I was originally misdiagnosed with Irritable Bowl Syndrome because of that.
I had already started a gluten free diet because I needed some kind of relief and didn’t have health insurance. That, combined with my (at that time) doctor’s ignorance about the blood test, caused me to suffer longer.
Sometimes you have to do what you have to do, but that experience taught me the importance of doing a lot of research on any doctor that I work with.
That research is how I finally got the Celiac confirmation AND how I got diagnosed with ADHD later. A good doctor is invaluable.
I’ll Leave You With This…
When you hear stories of a gluten free diet curing a person’s ADHD symptoms, just remember it didn’t cure their ADHD.
It may have treated an undiagnosed Celiac, NCGS, or something else.
A Gluten Free Diet Helps Undiagnosed Celiac or NCGS, not ADHD
And both of those are more common with ADHD so it’s not always one or the other.
If you’ve been reading this and think you might need to explore a possible problem with gluten, talk to your doctor.
If you are looking for a new doctor, I’ve found it helpful to research a well informed doctor on the subject. Here’s how I do the research…
A Good Doctor is Invaluable for Getting the Right Diagnosis. Here’s How to Find a Good One.
I looked for a doctor that identified where and when they got extra education or training in working with Celiac (I did the same with my ADHD doctor).
Then I looked to see that the doctors I found had a lot of positive recommendations. Getting dismissed is the worst and if they have a ton of people talking about how sweet and helpful they are, it reduces the chances of a condescending attitude.
Whatever you decide to do, knowledge is power.
Leave me a comment and tell me your experience with this!
There’s an affiliate link in this post. If you decide to buy that surprisingly good gluten free Ciabatta bread, Amazon will give me a few cents. But not at your expense.