Finding out that I have Celiac

A co-worker asked me to share my celiac story because they thought it might help them deal with issues they are having. I’ve been considering doing so already, so I used it as motivation to write this. I also have an article on gluten-free sourdough in the making!

I didn’t start out in great shape

I figure the right place to start is a bit about my health. I’m a 30 year old white male, with a big frame but borderline obese. I’ve had “Irritable” bowels since childhood. I got hospitalized twice before the age of 16 for “Appendicitis” that turned out to be a problem best solved with laxatives. A year ago I was hospitalized for a C-Diff infection. All they really had to do was put an IV bag on me nonstop, but without it I likely would have died of dehydration because I was losing liquids faster than I could drink. I knew my guts hated me. “IBS” was all MDs would say on the matter.

I had other health issues too, my septum was driven back into my skull by a classmate when I was 16, and after reconstructive surgery I still have constant sinus headaches and a perpetually snotty nose. Maybe it was all the snot and blood I swallowed all the time that made my guts hate me. I started having severe migraines at age 16 too. That turns out to have been related to a heart issue (PVST) that got discovered when I was 24. Turns out the 16 year old with severe hypertension and tachycardia was written off as “nervous” by every doctor I had. Basically, I spent the ages between 16 and 24 in constant severe pain. Between the sinus headaches and the constant migraines, I didn’t care or notice that my guts hated me.

At 24, a bit before my heart surgery for the PVST, I started having severe joint pain. The Rheumatologist tested my mobility, found I was hyperflexible and decided I should just expect joint pain for the rest of my life and to be careful not to hyper extend anything. I was used to constantly being in pain, a little more for life actually wasn’t scary.

Then I woke up from heart surgery without a migraine. I’ve had a few since, but not the almost continuous pain I had before. I was ecstatic. Laying in a hospital bed recovering from endoscopic heart surgery, I felt better than I had since I was 16. After a few months of euphoria, I started to notice my old pains again. Doing a lot of research I found out about Ehler-Danlos Syndrome, which is a mutation of collagen that affects joints and skin. It almost fit, and I actually met the formal diagnostic criteria. But most people with EDS are tiny, skinny, white women. I’m not that. Basically, I knew I had a condition that caused inflamation all over my body, but I had no idea what.

Fast forward 5 years of me muddling along. I can look back and see how every year since I was 20ish, I have been doing worse and worse. I had less energy, was less active, and I was more anxious and depressed each year.

Things got worse

In the last 6-9 months I took a turn for the worse. I was having difficulty focusing enough to get work done. I found myself passing out almost as soon as I got home from work most nights. I had almost constant back pain (turns out that was my lymph nodes) and I was not just terrified of losing my job, but that I was going through early onset dementia (I have a genetic predisposition and 5 major concussions in my life). I almost left my spouse and loved ones to go die alone in the woods (I was a bit dramatic).

After being constipated for a week, and having severe gut pain, I decided to go to the ER. They were concerned about appendicitis but found me FOS (“Full of Stool”) with very swollen lymph nodes and sent me home because there were dying people to treat.

A good doctor decided to run a blood test

Celiac had never been on my radar as an issue, I barely even knew it existed.

My GP ran the Celiac panel as part of an array of tests. The celiac antibody test is done, essentially by putting a volume of transglutaminase with your blood and examining how much of it has reacted with your antibodies.Antibodies reacting with 4% of the transglutaminase would be a positive test for Celiac. My antibodies reacted with 100% of the transglutaminase and there were still antibodies left over. This is a much higher test result than most people with Celiac have.

We followed this with a visit to the Gastroenterologist. Normally Celiac has a 2 phase diagnostic process, because the blood test can provide a false positive. I had done my research, and multiple studies had shone that no score higher than 70% on the blood test had ever been a false positive. I knew with 95% confidence (literally) that I had celiac. My Gastroenterologist wasn’t awesome. The next step in the formal diagnostic path was a small intestine biopsy, for which I would probably have to wait another month and keep eating gluten. My doctor didn’t care that there was research to indicate it was unnecessary and wouldn’t support me unless I did the test. I had hope I could feel better for the first time in months, had been off gluten for a week (and was still anxious and depressed). This was the first time I had ever come close to punching a doctor. I didn’t think I could keep my job if I spent the next month unable to do it. I decided to put myself on the “soon as possible” list for the surgery.

On the drive home, I talked things out with my spouse and decided that I would go off gluten. If the biopsy test was more than 2 or three weeks out, then this would likely bias the results of it, so I wouldn’t do it and just figure things out on my own. My spouse’s phone rang when we got home (mine was dead) and a nurse set me up for a last-minute canceled surgery slot that monday, 3 days later. Basically I got lucky.

I spent that weekend eating way too much gluten. I expected it to be the last time I ever did. I had all the food I loved to glorious excess. Then I felt so sick and bloated that I still don’t miss gluteny food due to the experience.

I had my biopsy that Monday. They sent us home with pictures of my guts. I’ll spare you the images, but they looked like the ones on wikipedia to show off celiac. My Gastroenterologist sent me home saying that he was pretty sure I had celiac. My intestines were as smooth as a baby’s bottom and nobody really knows how I am managing to be fat while also starving to death. The biopsy confirmed severe atrophy of the celia in my intestines and they were full of white blood cells. I officially had Celiac.

I don’t just have Celiac, I have it bad

I’m a CS Phd and I did a lot of work in bioinformatics. I know how to read medical journals, which is an advantage I have over most people with Celiac. (I’m going to keep this vague and citationless because im lazy and this is more about narrative than reality). Basically, Most people with the condition are thin, essentially starving to death. Regaining weight is a normal journey for them. 15% are fat like me. We tend to lose weight after a diet change. My blood work and biopsy both indicated that I had a severe reaction and if anything it was confusing that I was doing so well. I’ve eaten a 4K+ calorie diet most of my adult life, but my weight has been constantly stable (225±5 lb for the past decade). Our working theory was that this was a symptom of celiac, and the only way I managed to stave off severe nutrient deficiencies and starvation so long. The fact I’m eating a lot less now, three months after my diet change supports that but my weight hasn’t changed at all. My diet is simple now: Rice, vegetables, meat and gluten free soy sauce (tamari). With attempts at gluten free bread as a treat.

I am doing a lot better

My post gluten life has been accidentally intertwined with my experience of the covid-19 crisis. Where most people have had a horrible 3 months, mine have been some of the best of my life. My mood and energy levels have remarkably improved. I’m exercising and putting on more muscle than ever before. I had to look up what “healthy poop” looked like because mine was doing this weird thing I had never experienced before (Bristol type 4). My brain fog has cleared, and I haven been able to reason and argue this clearly since before my undergraduate degree. My life is overwhelmingly better.

Getting Glutened Sucks

The next challenge has been getting glutened. It has happened twice so far, both from accidental contamination while cooking. Both must have been literally a microscopic amount of gluten.

In both cases, the experience has been dramatic and both have followed the same chain of events. The second time was easier because I knew what was going to happen.

• 1-2 hrs after exposure: Horrible gut pain and diarrhea, coppery smelling stool that is probably my intestinal linings
• 1-2 days after exposure: Severe constipation. Exhaustion. I can barely stay away and I slept almost the entire days
• 3-4 days after exposure: Less physically distressing, but acutely anxious and depressed. Essentially 2 days of solid panic attacks
• 5-7 days after exposure: I feel mostly better, but my constipation is ending and I am constantly having bowel movements (of increasing solidity)

Between talking to my GI and research, I’ve found that I’m probably 1 or 2 sigma on the “more sensitive” end of the bell curve, but none of this is unreasonable. The mechanism of the neurological side effects haven’t been established by the medical research community yet, but they have been observed. There is a lot of modern research about the interaction of the Vagus Nerve (which runs through the intestines) being highly involved in mood regulation. I imagine everything around it getting inflamed and swollen is involved in my experience. As a consequence of the severity of my response I’ve become very gluten-risk averse and probably I am a bit too paranoid.The cost of a mistake is literally a week of my life returning to a physical and mental state that terrifies and disables me. Right now at least I’m erring on the side of paranoia. I’m worried about going back to the office as the covid crisis ends. The loss of control of my environment and loss of easy access to my now spotless (for the first time ever) safe gluten free food prep space terrifies me.