INTERNAL DRAGONS: DELAYED DIAGNOSIS OF CELIAC DISEASE

The clock on my bed stand changed from 10:00 to 10:01. My stomach was acing so badly.  I tried to force myself to sleep. I knew that if my stepdad heard me get up again to go to the bathroom that I would be in trouble. I already had gotten a lecture about going to bed.  The lumpy gushy snake feeling inside my bowls moved again and I grabbed my knees.  I listened for snoring.  If I could just hold in all of my illness until I heard snoring, then maybe I could be quiet enough to use the bathroom again. As I slowly got out of bed, my head was spinning. As I pushed my head against the wall to listen for the rumbling sounds of my stepdad sleeping, the liquid snake moved again. Ugh I wasn’t going to make it. I had to go now. I crawled across the carpet and reached up to the door knob.  I fumbled as my bowls grew more angry. I clung to my stomach as I rushed to the next door. The bathroom was long and narrow with the toilet at the furthest end. 

As the fluorescent lights flickered on brightly onto my sleepy face, I began to see splotches of blackness. I felt like a spotlight was shining on me, trapped in my own darkness, a prison of illness. I grabbed the toilet bowl to sit, pouring with sweat and barely able to distinguish anything. I grabbed a towel and put it on my lap and my head.  The blackness consumed me as I wretched in pain.  I felt my consciousness slip as everything went dark. I felt my body fall and could do nothing about it. The pain in my bowls was unending.

“Michelle – Michelle,” I heard my stepdad roar.  I looked up pouring in sweat. What did you do?  I blinked and rolled onto my back. I looked up at the empty town rack, confused as to whether he was angry at the towel which was now on the floor or if he was angry that I was on the floor. His anger was constant and uncontainable. There were a thousand reasons for his anger and also no reason for it at all.  

“I’m sick” I said. 

“You need to clean this up, immediately,” He demanded. 

“Yes, sir,” I responded not knowing what he was even talking about.  I stared at the popcorn ceiling wondering if I was going to pass out again. I was pretty sure that I was. My stepdad slammed the door and the internal dragon inside unleashed its fury in another violent bout. I again went for the toilet bowl and rushed to sit. Resting my head on my knees, I look to my left and see piles of my own shit in a path toward the toilet. “Oh, I thought. I didn’t have the energy to be embarrassed. I was too weak to think anything other than “oh.” My body was limp and my spirit was deflated down to the point of accepting just about anything. I had no choice but to succumb to a set of chores for the rest of the night, but I not yet. I faded in and out of consciousness several more times, taking off all of my clothes. My body temperature swung like a pendulum from feverishly burning to shivering with cold as the sticky cold sweats raged over the surface of my skin. I felt utterly alone in my illness.

As I passed between the doors of darkness to skin on fire to numbing emptiness, I thought, “This isn’t normal, something is wrong. This happens too often to be normal.  No one else that I know, goes through this. What is wrong with me?  Why do my parents call me a hypochondriac when I am like this?  Is this going to kill me?  What IS this?” I was 13 and longed for the confusion of teenage identity compared to the confusion of an ill body and apathetic parents.   

“Knock Knock” I heard my stepdad say on the other side of the door. I was relieved that he didn’t come in again after what he saw before. He asked, “Have you got it figured it?”

“Yeah. About to take a bath,” I said.

“Make it quick” he replied and walked away with heavy footsteps immutable by carpet. 

I ran the bath and cleaned myself off with wet toilet paper. I was use to dealing with a lot of shit at this point in my life. I grabbed more toilet paper and scooped up the biggest blobs of my sickly shit as quickly and as neatly as possible. I swiped small brown shit smears on the white tile while trying to avoid getting it onto the grout. What a fucking mess. My stomach was still smoking from its fire and fury. I must have flushed a hundred times and wondered if I my stepdad would charge me extra water usage for that month as he threatened such “fees’ all of the time. He most recently threatened to have me pay for my own education if he “had to send me to private school.” I wondered if he would allow me to pay for a doctor to get to the bottom of all of this. Doubtful. 

I grabbed the Ajax from under the bright red sink and scrubbed the tile floor. The tiles felt as cold and clammy as my skin. I hoped that a bath would help.  Finally, I finished cleaning “my mess” and sunk defeated into the bath. My stomach remained angry and on fire. I closed my eyes and tried pushing back my sickness. It was ever present. It felt like a lava wave welling up in my gut. The tides were momentarily low, but they rose quickly. I leapt out of the bath and back to the toilet. Then the dragon grew. I was forced to turn around as I felt vomit upwelling into my throat. Tears rolled down my cheeks. This night’s battle was not going well at all. I felt defeated even though I as I continued to fight. My body’s inner dragon was winning against me. Physically defeated, though ironically not self-defeated. The irony was not lost on me, even at 13. Several hours of misery and another bath later, it was wee hours of the morning. I finally crawled back to my room. I heard the methodic sound of snoring coming from the other side of the wall. 

Before passing into sleep, I thought, “They know something is wrong.  They know this isn’t normal.” A memory from five year before rushed into my mind. At the time, we were living with my grandmother because our house had sustained major damage from a flood. I slept with her and used her bathroom every night. I tried my best to hide my illness from others partly from embarrassment and partly out of fear of retaliation by my stepdad. One day, my grandmother confronted my mom.

“I have to talk to you about Michelle in the bathroom,” I heard my grandmother say as I listened from the other room. “She has diarrhea, every time. All the time.” I was mortified by the personal details of this conversation. Yet, a small part of me hoped that my mom would listen. I wanted to deny that anything was wrong. I wanted to hide from them and myself. Having to talk about bathroom stuff was difficult enough but knowing people are talking about your bathroom behind you back was traumatic. I didn’t want attention focused on my bathroom habits but at the same time, I wanted help. 

“What do you mean?” my mom asked.

“Well, it’s just that ever since we have been sharing a room, she gets up a lot at night and in the morning. She takes a long time in the bathroom and she is going the whole time.  She’s not in there fooling around. She goes from sleeping and she wakes up to go.”  I loved how my grandmother prefaced her statement by answering the parental doubt of “kids fool around to avoid sleeping” that she instinctively knew was my mom’s “go to” argument.

My mom quickly changed the subject and the rest of the conversation trailed away in my ears as I crept back to the bedroom I shared with my grandmother. I felt safe in that room and in that bed. I felt safe knowing that when I was sick, my grandmother watched over me. I felt relieved that she didn’t talk to me about it, knowing I would be embarrassed to discuss poop. It was oddly reassuring that she was listening to me have diarrhea every day. Her concerned left me feeling as though I wasn’t alone in my suffering.

The 8 year old that heard that conversation became a teenager. During those five years, we moved back into the flooded house and moved again into the house with the red sink. As our housing improved, my bodily home declined. I grew bigger but weaker each year. My consciousness felt fierce and hopeful, but the inner dragon was giving me a beating. The abusive nature of my parents was wearing me down further. 

Daylight peered in from the window, shining onto the clock. I rolled over, frustrated and still ill. I covered my head. “They know.” I kept thinking. “They know, and they don’t care.” The snoring continued. As I drifted to sleep, I knew that soon an alarm would go off in the other room. When that happened, he would be back. Sleep fell over me, hard and fast from pure exhaustion. 

Like a recurring nightmare, I relived this scene in my youth. Like a hamster on a wheel, I cycled thorough illness. I tried to hide my illness but it was over too great and overcame me. I found myself asking for bathroom passes at school and hobbling down the hallway as blackness spotted my eyes. I passed out in the bathroom stalls and prayed for the feeling to pass. I was always afraid of getting in trouble for being in the bathroom too long both at school and at home. All the while, I would think to myself, “My parents know what is happening to me, they know and don’t care.” I wondered if I would survive the state I was in. I wondered if I would have a normal life, become someone’s wife, have children, have a career. I didn’t know what was wrong with me. I didn’t know if I would survive it. Whatever it was, it got worse every year.

By college, I was accustomed to passing out all the time. Falling on the floor unconscious, hitting my head on the way down, seeing black was all part of an odd normalcy. Living in pain was normal to me. At 19, doctors diagnosed me with endometriosis. During the multiple surgeries they performed, they cut away scar tissue that grew all over my intestines and my bladder. I was riddled with stomach issues and an overactive and painful bladder. Doctors attributed stomach issues to the presence of scar tissue. It took ten more years to diagnose my celiac disease and interstitial cystitis.

When I started seeking help, doctors told me I had irritable bowel syndrome. They performed no tests to be sure. Endometriosis provided a catch all excuse for my symptoms as apathetic doctors pushed me out their doors with no answers year after year. It was almost as if the psyche of my parents infiltrated the doctors. No one seemed to listen to me and no one seemed to care. Finally, when I was in my PhD program, one of the campus doctors listened to me. She sent me to a GI specialist and an urologist. After a myriad of tests, the GI specialist finally diagnosed the celiac disease. The urologist only needed to hear my bladder pain beginning at age 8 to know what my problem was. I felt hopeful that doctors were finally helping me and angry that it took so long.

Delayed diagnosis is one of the hallmarks of celiac disease. Delayed diagnosis stories permeate social media pages. For example on October 7, 2022 on Gluten Dudes Facebook, he posted,

Just received the following heartbreaking email: “I was a 21 year old naïve girl when a doctor said I had an eating disorder because eating gave me pain and nausea. I was nearly 50 when I was urgently admitted to a neurology ward having been unable to coordinate my body for months. I was deficient in everything including B12, vitamin E, iron,  calcium, etc. Too late; the damage to my body and life has been done” I’d like to have a few words with the first doctor. (Gluten Dude)

I am not sure how many women with celiac disease I have read about that were wrongfully diagnosed with an eating disorder, but I experienced the same treatment. At 15, I sat in a therapist’s office as he ordered me to get onto a scale. “Ninety pounds. You are severely underweight for your height,” he said. “Your bloodwork shows that you are anemic. It seem to me you have an eating disorder. Are you afraid to gain weight.” My eyes glazed over as I sat in his office. Self-induced numbness was a state I thrived in at this point. My parents’ abusiveness had erupted to the point of me moving out of their house. I was back in the safety of my grandmother’s house. However, they intently set me up as a scapegoat for their abuse. Instead of seeking therapy for their narcissism, medical neglect and violent treatment of their only daughter, they put me in therapy. He disguised their abusiveness with lies. I again found myself ease dropping on conversations held behind my back. “She’s just so thin; we are so worried she is starving herself. She definitely has an eating disorder; we just know it,” my mother told him. Before I even walked into the door, the doctor’s mind was made up. I didn’t fight with them. Glassy-eyed I just stared and waited for the session to be over. “I want you to work on eating better,” he said. “I can prescribe something for you but let’s see each other again in six months to see where you are at. I want you to gain ten to twenty pounds by then. You can eat things like milkshakes and eggs to help you put on weight.” I didn’t bring up my stomach issues, I didn’t vocalize at all. I just nodded.

I never saw that doctor again. The relationship with my parents deteriorated more over that year. I saw them less frequently each month. Eventually, discussion of eating disorders faded into the past. I was still thin and I was still in pain. I searched for answers. Relief poured over me when I finally was told I had celiac disease. At first, the doctor thought I had crohn’s disease as the entirety of my bowels and GI tract were inflamed. I suffered from reflux, diarrhea, nausea, and vomiting. Miraculously thought all of that, I mustered up the strength to pursue graduate school and a PhD. Maybe I was so used to being in pain that I was able to trample though my schooling. However, more likely I was on survival mode constantly and my schooling was an extension of that.

Delayed diagnosis is a huge issue for some people with celiac disease. On the website NHS Inform, a November 19, 2024 post stated that it can take an average of 13 years to diagnose celiac disease (nhsinform.scot). On celiag.org updated January 13, 2022, they posted an article entitled “20 Things You Might Not Know about Celiac Disease.” The article states,

There is an average delay of 6-10 years for an accurate diagnosis of celiac disease. Without timely diagnosis, celiac disease can lead to intestinal cancers, type 1 diabetes, osteoporosis, thyroid disease, multiple sclerosis, anemia, infertility, and miscarriage, epilepsy and more. The later the age of celiac diagnosis, the greater the chance of developing another autoimmune disorder. (celiac.org)

The delay in diagnosis has a huge impact on sufferers of celiac disease. When I interviewed my friend Larson on February 16, 2025, we discussed the delay in his diagnosis.

Our conversation was as follows:

M: That’s good. That’s really good. So then moving to celiac. When did you start noticing symptoms of celiac?

L: Um, it started when I was about 13, about to be 14. I noticed that I was just getting randomly bloated more often. Having to use the bathroom a little bit longer. Having just gas in general. Like burping a lot, farting a lot. Stuff like that.

M: Yeah

L: Um, that went on for about 2 years before I was officially diagnosed. I was diagnosed sometime in the beginning of ahhhhh 2010? Yeah 2010.

M: And they did a biopsy diagnosis for you?

L: Yeah. Um my doctor already suspected it because I already had the Type 1 diabetes and those tend to domino into each other but um they did the biopsy and it showed positive.

He went onto state “Um, my doctor actually said if that situation had happened even two years later my body would likely not have recovered from being in that state.”

Doctors treating individuals with Type 1 diabetes have celiac disease on their radar. Some of them do bloodwork to see if there is any indication of CD. One of my questionnaire participants experienced this as he also had Type 1 diabetes. When asked How long it took to be diagnosed after beginning the pursuit of diagnosis for symptoms, he responded, “As a type 1 diabetic, I was tested as a part of my routine blood work and told I had celiac disease” (3K-C) another stated, “At 14 years old, went to see a general physician about my sudden stomach pain and incontinence and theysuggested I had Celiac discease because I already had type 1 diabetes and it was common to develop” (4-LJ).

For Larson, despite his doctor suspecting celiac disease, it took two years to diagnose with severe consequences. Larson lamented how sick celiac made him due to delayed diagnosis. The discussed the way it changed his life trajectory. He stated

L: Um, but it just and just like the celiac hitting me so hard what if I caught onto it sooner or wasn’t that sick. Like just so many what ifs that you know could be one thing if you are spending what ifs like what if things ended up with that girl but when it changes your life so starkly and so dramatically yeah it really does feel like a spiritual death, an ego death.

Delayed diagnosis is a recurring issue for those of us with celiac disease. The methods of diagnosis leave a lot to be desired. Most individuals do a “gluten challenge.” This entails eating enough gluten for long enough to induce a significant amount of flattening of the villi. Biopsies are not a perfect science. The doctor have to find the damage using only a scope and is often missed. Some Celiacs have multiple biopsies before confirmation of damaged villi. The testing for celiac disease is in itself part of the delay. The delay of diagnosis is compounded by apathetic doctors blowing off gastric symptoms by misdiagnosing them as eating disorders or minimally invasive diseases like irritable bowel syndrome. The need for better diagnostic tools is great. Community member with undiagnosed celiac disease continue to suffer as the medical community lacks in its funding and research of what is the most common autoimmune disease in the world. The impact on the psyche of those who experience delayed diagnosis of celiac disease should not be underestimated. We must do better for the community.