Henry: I think around 13 is when I first got symptoms—stomach pains, which are typical, but it didn't necessarily manifest in the way that doctors would expect, like a lot of issues in regards to just temperament, fatigue, mood.

My name is Henry, I live in New York City. I live with my girlfriend Lindsay, and I have celiac disease.

The adjustment period was kind of rough. I think it also is just a disruption to life, and disruption in life in general is tough to go through, especially at the age of 14 or 15.

Marilyn: At 15, we had a child who was so malnourished because he could not absorb the nutrients due to the damage from celiac disease that he literally could not get out of bed.

I spent as a parent about the first year just trying to figure out how to feed him.

Three weeks after following a gluten-free diet, Henry stood in our kitchen and he said to me, “Mom, my brain is no longer telling me to kill myself.”

No parent should ever have to experience a child who was going through that much trauma.

Henry: As I think about the challenges when I was newly diagnosed and particularly in the teenage years, you have to start making significant changes to your diet. You have to track things and be aware that if you don't, you're going to get sick.

It makes you feel like anything from going to get food after school to dating can become an awkward conversation.

Marilyn: I think the most common misconception about celiac disease is that it's not actually a disease, that it is a dietary preference, a food allergy, something that you can easily cure by simply not eating products that have wheat in them.

It is one of the world's most common genetic autoimmune disorders. It is not something that you can grow out of, and the gluten-free diet is actually very difficult to follow.

Henry: Symptoms change with time with celiac disease. That said, if I eat gluten at this point—which it's hard to avoid if you're eating out in New York City—I'm still going to get those gastrointestinal discomforts, kind of the symptoms of food poisoning effectively.

I do recommend symptom tracking to anyone living with celiac disease. Actually putting pen to paper, confirming the insights that you have hypotheses for is incredibly important. And then being able to describe that in a quantitative way—to be able to say 1 to 1: I ate this food Tuesday and Thursday. I got ill both times. I think I'm going to remove that from my diet.

I give a lot of advice in the vein of: you should probably be more aggressive than you think that you should be in terms of telling people in restaurants, “Hey, I have celiac disease. Can you change your gloves? Can you use different utensils?” If you're making pasta, boil a different pot of water than the normal pasta is made in. All those things that make you feel a little bit more comfortable.

When I can buy ingredients, cook, eat in, I have control. I have the gluten-free kitchen. I use gluten-free appliances. That's a version of control.

I think there's a lot of reason to be motivated, excited by where celiac disease has come from and is going to. I think there's just a general movement in terms of how the world has perceived celiac disease over the last decade.

I have a lot of hope when it comes to what's on the horizon for celiac disease.