Celiac Disease: A New Diagnosis

So, as I always try to remember is true for everyone I interact with each day, there have been some things going on in the background of my life.

One of them is continued stomach aches and GI issues frequently and urgently popping up at inopportune times and seeming without regard to what I've eaten or how I've acted before. Also the chronic yeast infections I fought for years, while MUCH improved since going off hormonal birth control (and thus initiating a chain of events that ended in a tubal ligectomy + ablation and then a full hysterectomy), are not entirely gone despite doing ALL the things you are supposed to do to prevent them. In addition, the occasional heartburn and bloating remain present, along with brittle nails, random patches of eczema or psoriasis, and rosacea.

Thanks to an abdominal CT scan during an executive physical last year, it was discovered that my gallbladder was "packed full" of gallstones. This came as a shock to me since I'd never felt any pain from the stones or had many of the expected symptoms from them. However, after discussing it with my doctor and a surgeon, and noting that I did indeed have GI issues, heartburn, and bloating, and taking into account that a gallbladder as "packed full" as mine can become gangrenous and necrotic and cause a far more emergent situation, particularly while traveling, we decided to have it removed and that surgery was done last fall. And yet, my symptoms haven't really changed? If anything, they recently got worse.

Which brings me to the GI specialist initial appointment I had two weeks ago. The doctor who oversaw my executive physical strongly recommended a colonoscopy as early as insurance would cover given my many GI concerns and the sharp rise in colon cancer among young adults. He recommended a particular doctor in Dallas, who I then failed to contact for many months, and then had a many month waiting list once I finally did.

My appointment was May 8th. I liked the doctor very much. He was attentive, asked a lot of questions, and listened to all my answers. He showed me pictures and charts to explain what he was telling me, and as a fully visual learner, I appreciated this very much. He let me know that 1 out of 100 gallbladder removal patients experience bile acid malabsorption which could be the cause of my recent increased issues. There's a daily pill that often works to fix that, so we're giving it a try. Then he ordered a few tests to rule out other things while we wait to see if the pill fixes the potential bile issue.

One of the tests was a celiac blood panel. It was a relatively small blood draw, done immediately following my appointment, and the results were back in two days. My result for Gliadin AB IGA and IGG were high. My Tissue Transglutaminase Antibody IGG result was normal, while my Tissue Transglutaminase Antibody IGA result was well over 100, more than 10x the normal upward limit.

In other words, I almost certainly have Celiac Disease. Celiac is an autoimmune disorder where your immune system attacks the tissue of your small intesting when you eat gluten, causing damage to the villi, leading to malabsorption of nutrients and numerous other issues (issues like literally everything that's been wrong with me). The only real treatment is to stop ingesting gluten in any form.

While my blood work values are such that a definitive diagnosis could be made based on them alone, my doctor is concerned about certain additional conditions I could have and wants to do an upper endoscopy, take duodenal biopsies, and do a colonoscopy to get a look and a baseline. I'm scheduled for June 12th and have been told to NOT change my diet until after that procedure.

Honestly this is something of a relief as I feel like I have some times to mentally adjust to a big change and permission (indeed, an order!) from a medical professional to spend 30 days saying goodbye to my favorite glutenous foods. A gluten farewell tour, if you will. So I've been eating normally (i.e., not going carb crazy), but very intentionally savoring every bite of the perfect bagel I ate in NYC, my very favorite pizza for dinner last Friday, and the best grilled cheese in Dallas while my mom was here to shop. This is also why James surprised me with the reservation to our favorite Italian restaurant and that small plate of Cacio e Pepe was everything I needed it to be.

I was going to wait to write about this until after the June 12th procedures so I could be certain, but the truth is the blood work is pretty conclusive and my brain is busy processing this now and writing has always helped with that. If my biopsy comes back with a different result after June 12, then I'll process that through writing too. After I got the panel results back I asked my doctor how likely it was I did not have celiac (i.e., can I spend this time researching the disease and mentally preparing myself?), and he said there was almost no chance I do not have it and if research brings me more comfort than anxiety then I should feel free to start.

So I think we all know I IMMEDIATELY dove into research (which I would have done anyway, but I was curious how my doctor would handicap my chances of a "nevermind! continue eating all the gluten forever!" end result). And it has brought me some comfort. It has also answered MANY MANY things that have been problematic and/or mysterious about my body for the last 20+ years.

Like my chronic yeast infections and the painful allergic reaction that developed in response to them, my frequently shitty immune system, my lifelong GI issues, my surprise gallstones, my headaches, my frequent mouth sores that constantly appear even though I barely eat any sugar or candy anymore, my skin rashes, my frequently low levels of vitamins in my blood work, and more. It's so much that I alternate between relief at the idea of future improvement and fury that I never had this simple blood test before. I have seen so many doctors for so many years. Relief and fury, indeed.

I am comforted by the close friends I have who have been living a gluten-free life with Celiac Disease for years. I know it can be done and I know there have never been more gluten-free options than there are now. But I'm also in mourning. I know it will be fine, but I also love Cheez-Its and bread and pizza and pasta and cookies and CHEEZ-ITS and I will miss them.

It made me feel better when, during our dinner date at Nonna on Saturday night, I mentioned to James that I was a little sad to be eating my last plate of classic Cacio e Pepe. "Oh I'd be devastated," James immediately replied, holding my hand and giving it a squeeze. "I'm being positive for you, but all the best things have gluten. I would be so sad." And I felt seen. This man who seems to be able to adjust his diet at will- to cut out foods he thinks make him feel bad, to add in foods he doesn't like because they make him healthier, to stop drinking alcohol for a decade at a time because he wanted to see how it would feel- this man who cut out all candy and desserts when he decided to get back into competitive swimming as an adult, who stopped eating most gluten a year ago when he decided it made him feel better. THIS MAN would be emotional, devastated, depressed... I really did feel better.

So that's where I'm at. I'm truly largely just relieved and excited about how much better I think I'm going to feel in the future. I'm energized by the challenge- I love change, and I love all the reading and thought and work that goes into one. I'm aware of how small a change like this is in perspective to the health issues of so many others. But I'm also sad? There are alternatives to all my favorite things (well, maybe not cheez-its), but those alternatives are just that- alternatives. Stand-ins. By definition, not the original. Everywhere I go I look at the menu or the conference room food service station and assess the gluten-free options. Sometimes they aren't great.

James is all in on support. He does nearly all the cooking will adjust our menus accordingly. The kids are on gluten watch and constantly telling me when they come across it in the wild (constantly, this is constant). I'm reading and learning and mentally adjusting every meal I see to what it will need to be in the future. I'm bracing myself to have to answer "yes" when the server asks if there are any allergies or sensitivities they need to be aware of, and having to potentially turn down well-intentioned food or treats made or served to me (this is more horrifying than almost anything else). I worry a little about all our future travels and the additional awareness and research that will need to go into all of it and the fact that I will not be able to dive face-first into the fluffy pita plate like I did when we finally got to eat after landing in Egypt.

But! I am largely relieved and optimistic. I'm currently on a plane flying home from a trip to DC (my take on the airport's gluten-free options was they were few and unimpressive) and would love to know any stories, resources, recipe blogs or books, and/or anything else that might be helpful. I've got 21 days until my biopsy and I would like to have read the entirety of the trustworthy part of the internet and feel more prepared by then!