# The Day You Get the Celiac Diagnosis By Gregory Wilson · Excerpt from Chapter 1 of *Celiac vs Me* If you're reading this, there's a good chance you've just been handed a piece of paper, or a chart on a screen, that has changed your life. Maybe a doctor said the word celiac to you for the first time this week. Maybe you Googled "tTG-IgA" at eleven o'clock at night and have not slept right since. Maybe you're the spouse, or the parent, or the friend of someone who got that news, and you're trying to figure out how to help. Welcome. This is the book I wish someone had handed me on the day I learned I had celiac. ## The number on the screen Eventually my primary care doctor referred me to a GI specialist, who ran a fresh round of tests. One of those tests was the simple IgA blood panel that screens for celiac. It measures an antibody called tTG-IgA, which your immune system makes when it's reacting to gluten. The result came back to MyChart, that's the patient portal, where you can see your lab numbers before your doctor calls you about them. The number you want for tTG-IgA is below 20. Anything over 30 is considered positive. Mine was 1021! One small note before we go on. The exact cutoffs for tTG-IgA, what counts as "normal," what counts as "positive," vary by lab and by the specific assay being used. The "below 20, over 30" numbers I'm giving here are the ones from my lab, on the day of my test. If you are looking at your own result on MyChart and the reference range printed next to it is different, that is normal. Read the range your lab printed, not mine. And keep in mind that you may see other antibody tests on your panel: Deamidated Gliadin Peptide (DGP-IgA), anti-endomysial antibodies (EMA), and total serum IgA. Each reports on its own scale, with its own reference range. Don't compare numbers across tests. Only compare each result to the range printed next to it. If you're newly diagnosed, you probably know your own number, or one like it. And you probably know the feeling of staring at it. There is a particular silence that happens when you read something on a screen that you do not have the framework to interpret, but that you can tell, instinctively, is not a number that's supposed to be near where yours is. My doctor called me within five minutes. "Well," she said, "we know what the problem is. You have celiac disease." ## The wall The first thing I felt was that I had no idea what to do next. I had been told to stop eating gluten. I did not, in any meaningful sense, know what gluten was. This is the wall. The whole book is about the wall. The world tells you "just don't eat gluten" the way someone might tell you to "just stop drinking coffee" or "just get more sleep." Like it's a single decision you make once. That is not what it is. Gluten is in most soy sauce. Gluten is in the malt flavoring in Rice Krispies. Gluten is in some salad dressings. Gluten is in the gravy on the turkey at Thanksgiving. Gluten is in the wooden spoon your friend used to stir their pasta water last Tuesday and then used three days later to stir your supposedly-safe stir-fry. Gluten is in the soup base at your favorite Vietnamese place. Gluten is in the shared fryer oil at the restaurant you've gone to for ten years, the one where the onion rings and the french fries take turns in the same basket. What you have not been given, on the day of your diagnosis, is a working model of where gluten is in your life. You have been given a rule — do not eat it — without the map you need to follow it. That's the wall. The wall is the gap between the rule and the map. It is enormous. ## The grief, and the Tuesday afternoon That feeling has a name. It's grief. Specifically, it's grief for an ordinary life that worked just fine yesterday and does not work today. If you are newly diagnosed and you are feeling that, I want you to know two things. The first is that you are not being dramatic. You have lost something real, and it is OK to grieve it. The second is that you are going to be fine. Not next week. But somewhere a few months in, on a perfectly ordinary Tuesday, you are going to realize that you have not thought about gluten for an entire afternoon. The wall does not go away. But you will have learned how to climb it, and now climbing it is just one of the things you do, like locking the front door, or putting on a seatbelt. --- This is an excerpt from Chapter 1 of Celiac vs Me. The full chapter also covers four years of misdiagnosis before the test came back positive, what to expect from the upper endoscopy, why the GI tells you to keep eating gluten right up until the biopsy, the suggestion to plan a deliberate last-gluten meal, and the most important thing you can take from the whole book: you are about to lean hard on the gluten-free community, and they will save you, the way they have already saved me. - [Paperback](https://a.co/d/0ci9KEzr) - [Kindle Edition](https://a.co/d/0dqv86CH) ## Related chapters - [The First Weeks of Celiac Life: Rebuilding Your Kitchen](https://celiacvsme.com/the-first-weeks/) - [Telling People About Your Celiac Diagnosis](https://celiacvsme.com/telling-people/) - [Reading Gluten-Free Labels: Certifications, Ingredients, and Hidden Gluten](https://celiacvsme.com/the-aisles/) - [Eating Out with Celiac: Trust Signals, Dignity Signals, and the Bridgeport Ribeye](https://celiacvsme.com/the-table/) - [Celiac Travel: Road Trips, Hotels, and the Parking Lot Moment](https://celiacvsme.com/the-road/) - [The Holiday Calendar with Celiac: Thanksgiving, Birthdays, and the People Who Love You](https://celiacvsme.com/the-calendar/) - [The Body Underneath: Bloodwork, Healing, and the Real Goal](https://celiacvsme.com/the-body-underneath/)