INTERNAL DRAGONS: DIFFICULTY OF DIAGNOSING CELIAC DISEASE (CH3)

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 as I continued to fight. My body’s inner dragon was winning against me. Physically defeated, though 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. I had been accused for years of being a hypochondriac, a common experience of those with celiac disease (Green 1). 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. Misdiagnosis or diagnosis of concurrent problems is very common in people with celiac disease. Dr. Peter Green, the Director of the Celiac Disease Center at Columbia University, in the book, “Celiac Disease a Hidden Epidemic, Green discusses this phenomenon stating:

In the United States today, millions of patients suffer with symptoms that neither fit a specific diagnosis nor disappear….Their symptoms are treated, but not underlying cause can be found. One doctor’s diagnoses fibromyalgia, another chronic fatigue syndrome, a third irritable bowel syndrome…Six or seven years into this downward physical spiral, an internist suggests that stress may be the answer. In other words, we cannot find anything really wrong with you – perhaps it’s “all in your head.” Many patients live in a perpetual state of indefinable ill health that after a period of time, they begin to accept as normal. Some of the symptoms seem to ‘run in the family’” (Green 1-2).

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. Dr. Peter Green, the Director of the Celiac Disease Center at Columbia University, in the book, “Celiac Disease a Hidden Epidemic,” states, “Celiac disease is a multisystem disorder whose primary target of injury is the small intestine…Celiac Disease is the most common – and one of the most underdiagnosed – hereditary autoimmune condition in the United States” (Green 2). In the United States delayed diagnosis seems to be the norm. Green states, “The one that most patients have in common is a long road to diagnosis.” (Green 39). Delayed diagnosis stories permeate social media pages as well as books such as the one written by Green. 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.

I was only 15 when I was accused of having an eating disorder and interrogated by a doctor that was unwilling to listen. Doctors that accuse women in particular of having eating disorders is another common occurrence on the path to celiac diagnosis. A celiac patient in Green’s book, Anna, 40 stated:

I knew there was something the matter with me, but no one would listen – that was stressful and frustrating in itself. I guess I’m living proof the body can learn to live with anything. I went to twelve gastroenterologists – four told me its all in my head. One told me: You’re a thirty nine year old female, you’re divorced, you own a home, you have to go back to work, sounds to me like you’re looking for a husband. How many laxatives do you take a day to give you diarrhea? What do you do to make yourself purge? He said I was anorexic. I got up and said, “I’m not going to take this.” I finally saw a gastroenterological specialist and said: “You have to do something.” Well, he did a colonoscopy and endoscopy. The endoscopy came back and he said, “You have celiac disease.” (Green 65)

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 (cited by Celiac. Org, Green cites 5-7 years, Green 3) 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 they suggested I had Celiac disease 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. Many individuals look back on their health history and realize that they likely had celiac for years or decades prior to diagnosis.  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.

In another interview that I did with my friend Lisa on February 3, 2025 at 5:30pm we spent a lot of time discussing her the events leading up to her diagnosis. She is a newly diagnosed celiac patient, having known about it for less than six months. When asked about what happened before and during her diagnostic experience, she stated:

So now that I know it, I can think back really my whole life about certain things. But what really was the tip of the iceberg was several months of just severe digestive changes and issues that weren’t really explainable. And then in October (2024), I got to a point where I was passing blood through my stool and I had diarrhea for like 14 hours straight and I had no idea if it was like food poisoning or whatever and I went to the ER and they told me to follow up with my primary care physician. And then when I went to my primary care physician, she looked at the bloodwork and the stool sample and everything they took at the hospital and she sent me straight to a GI specialist. So, within two or three days after that I saw a GI specialist and they really just asked what all my symptoms had been. I would bloat after anything I ate at all. My stomach was distended out and very hard to the touch and that kind of thing and I just felt terrible all of the time. And so they ordered a colonoscopy and an endoscopy because they didn’t really know what they were looking for. They just had a whole myriad of symptoms. Um, so that was all in October. My procedure was November 11th (2024) and up until then I had kind of started eating more gluten free, but I didn’t realize that was what I was doing. I just ate what didn’t make me as sick. So it was just very basic meat, vegetables, fruit. That was really it at the time. Because I was just trying to eat something that wouldn’t make me sick. And then it was after the procedure, it was about five or six days. Then I got a call from my gastro doctor and he stated that through the biopsy of the endoscopy it was very severe celiac. He labeled it a stage, 3a or 3b, so I’m really familiar with what the different stages mean but he said the words severe…. …And he pretty much told me, the stores have everything you need now, everything is a lot easier. Eat gluten free. That was it. No explanation, nothing.

Lisa’s experience with diagnosis was like a whirlwind, going quickly from a trip to the hospital to diagnostic biopsy. However, the severity of celiac damage indicates that she had gone for years before she was diagnosed.  Green explains the difficulty of diagnosis stating,

The symptoms of celiac disease may come on gradually or they may appear suddenly and dramatically. Symptoms may also wax and wane over a long period of time. Compounding the diagnostic challenge, there are approximately six “silent” or asymptomatic cases for each symptomatic one. Underlying the entire discussion is the medical question of what constitutes a symptom of celiac disease, since the definition is changing and covers a large spectrum of disorder” (Green 26)

I asked her to recall some of the physical symptoms she had before her diagnosis. I explained that in my case, I was notably sick from the age of eight. This was her response:

L: Me too! Mine was very young. I was never able to really do sports. Like any sports I would try I would become so over heated like so quick that my whole face would be blood red, my skin would be hot and itchy and my hair would be ringing wet with sweat and since I have gone gluten free, I do not sweat like that anymore.

M: There you go. Wow.

L: I was known for sweating like that. So that’s one thing that has really changed that I have always had since I was little. Temperature regulation, I guess.

M: Oh Yeah

L: So then, skin issues. I was told forever that I had eczema. That is gone now. Um, for the most part. Unless I get glutened, then I have skin rashes and all kinds of stuff. Let’s see. I was actually physically sick a lot as a kid. Like I was in and out of the doctor all the time. I caught every virus that was going around and I still do. And I don’t know if that has to do with autoimmune. I’m not sure. Um, my hair has fallen out.

M: And my hair will do the same thing. And when I got real sick, it was so thin that I actually had to cut it short because when it started growing back I had two different lengths hair all over the place.  

L: Oh yeah. I can see that. People just don’t understand all of this. Um, What else? I had a lot of balance issues. I don’t know if that’s related.

M: Oh yeah, that is. It likely is.

L: I still have balance issues.

M: What’s funny is, um ok…I was just watching a video today about that. Um, it’s called…whenever it affects the brain (gluten), it’s called gluten ataxia

It’s important to recognize that not all symptoms of celiac disease are stomach related. Stomach related issues, persistent bloating and diarrhea in particular, are the most indicative symptoms. In his book, Green devotes dozens of pages discussing different manifestations of celiac disease from skin issues to balance problems (ataxia), as well as discussing other autoimmune and concurring diseases associated (and possibly caused by celiac disease). Green states:

A delay in diagnosis also increases the chances of developing associated autoimmune diseases. Most adults with celiac disease have bone loss, resulting in osteopenia or osteoporosis. Anemia, malignancies, peripheral neuropathies…dental enamel defects, hyposplenism…and infertility are also secondary conditions associated with the disease (Green 3).

We know that myriad of symptoms occur in an individual with celiac disease. Other respondents to my questionnaire stated the following when asked “What sort of symptoms did you experience prior to diagnosis?:   

Horrible stomach cramping, weight gain, bloating (1K-T)

Dermatitis rashes, lightheadedness, anxiety, acne, acid reflux, bloating, joint pain, bad breath, receding gums, low iron, sciatica nerve pain, (2M-A)

None (3K-C)

Bloating, nausea, diarrhea, intense cramping, mucus in stool, lots of gas. (4-LJ)

Terrible diarrhea, cold sweats, passing out, vomiting, shaking, terrible stomach pain, low blood pressure, low blood sugar, body aches, headache, bloating, vitamin deficiency, weight loss, hair falling out, itchy rashes (5M-S)

In addition to stomach issues, the questionnaire sample and interviews cite skin issues, temperature regulation issues, balance issues, brain fog, joint pain, passing out, vitamin deficiency, hair loss among others. In an article posted by Timothy Cole in 2017, a list of 281 ailments are attributed to celiac disease. https://universityhealthnews.com/daily/gluten-free-food-allergies/celiac-disease-symptoms/ The number of symptoms increases the difficulty of diagnosis as many symptoms may be attributed to other causes. Cole states “Non-classical symptoms can make celiac disease harder to spot, particularly if a patient has other medical conditions.” Green further echoes this idea by stating, “Celiac disease has been dubbed the “great pretender.” Its protean symptoms and systematic manifestations can easily masquerade as a number of other illnesses. And its those conditions that are often diagnosed instead of celiac disease. The one that most patients have in common is a long road to diagnosis.” (Green 39). As Lisa and I further discussed her experience. She noted that she had a colonoscopy due to symptoms at age 17. She stated:

L: Um, that and I’m trying to think of anything else. A lot of stomach issues. I always had a stomachache. I just never realized it was from food. When I was younger, you know, there probably wasn’t as much damage to my intestines and stuff so it wasn’t like right after I ate. It was just that sometimes, I would randomly have stomach issues. I actually, when I was 17, I had a colonoscopy.

M: Woah.

L: Because of similar issues. And they just thought it was irritable bowel syndrome, but they didn’t do an endoscopy so there would have been no way for them to realize that it was celiac so um, then things kind of got a little better until they didn’t I guess… See they never ever did bloodwork on me because I got the endoscopy and they were like “the biopsy is the gold standard” 

At the time of her celiac diagnosis, Lisa was 36 years old. Her first colonoscopy without endoscopy took place at age 17. We can deduce that if her stomach issues at 17, attributed to “irritable bowel syndrome,” were caused by celiac that it took an additional 19 years for her to be diagnosed. Of course, with Lisa recalling stomach issues as early as eight years old, her diagnosis likely actually did not occur for 28 years. Misdiagnosis and late diagnosis is difficult to prove as there is no way to time travel and accurately test someone. We only can rely on ad historium when it comes to discovering how long each person suffers with symptoms of celiac before diagnosis. I know I suffered for at least 22 years before I was diagnosed and Larson also cited having stomach issues for years before his diagnosis.

Responses to my questionnaire I received also indicated misdiagnosis of IBS in particular. IBS is another topic Green discusses at length in his book stating, “Many patients (of atypical celiac disease also have mild but persistent gastrointestinal symptoms such as reflux, bloating, and dyspepsia that often get labeled as irritable bowel syndrome (IBS)” (Green 29).

As I furthered my research, two respondents also cited being told they had IBS when asked, Did you have doctors that misdiagnosed your celiac as another ailment?  Please expand on your experience. Here were two of the responses:

Respondent 1: They thought IBS at first due to family history (1K-T)

As a child was told I just had sensitive skin and needed to eat more bread and potatoes to gain weight. (2M-A)

Respondent 2: Yes, multiple other ailments.  IBS and also my endometriosis were assumed to be causing symptoms. (5M-S)

While celiac remains a relatively common autoimmune disease with a “pooled global prevalence of 1.4%. It is estimated that 83% of American who have celiac disease are undiagnosed or misdiagnosed with other. Green states, “While the disease is considered common in Europe, South American, Canada and Australia…only recently have studies shown that celiac disease affects approximately 1 percent of the I.S population…and about 50 percent of them are undiagnosed.” (Green 3). A lot of people in the United States consider celiac disease to be rare. Doctors personally have told me that the disease is rare, however globally professionals consider it common. The United States is lagging behind both in its perception of celiac disease and its ability to diagnose those with the disease. Green cites one person’s experience in his book stating, “There are some things that make me angry…misinformation among the major support groups, the price of gluten free food…but most of all, the lack of awareness of celiac disease among the medical profession. It’s the most frustrating thing.” (Hecky, 43) (Green 66). Another experience that Green includes in his book are one in which a young girl was close to death due to delayed diagnosis of celiac disease

My daughter weighed twenty-five and change at her two year visit, and five months later, she was sixteen pounds. I told my husband I don’t think she’s going to make it …The gastroenterologist discovered the celiac disease four days before we came to the hospital. I was told, “Just give her gluten-free foods, any store will know what you mean, she’ll be fine, and he hung up on me. When she stopped moving, we drove in the middle of the night to the hospital and the resident told me If we’d waited a day longer she would have been dead. She was so severely dehydrated and malnourished….We had gotten so far ito the disease that her intestines and her gut were just in such disrepair. We had to train her to walk again, I thought she was going to die (Ilyssa, 33). (Green 27-8) 

The average time it takes to diagnose someone is 6-10 years according to the Celiac Center at Beth Israel Deaconess Medical Center. https://www.beyondceliac.org/celiac-disease/facts-and-figures/ Not only are people that are symptomatic that have a delayed diagnosis, but there are people that are asymptomatic. These people are often diagnosed by a fluke like a regular testing for those that have Type 1 diabetes as was the case with one of my questionnaire participants or those with a Celiac family member that participates in a family study. He stated, I was asymptomatic at the time of my diagnosis, but struggled with stomach pain and diarrhea as a child As a type 1 diabetic, I was tested as a part of my routine blood work and told I had celiac disease.” (3K-C) This was the case for a family in Green’s book. He cites their experience 

I was diagnosed in 1991. We had my daughter screened in 1993 because she was so very thin. Her test results were totally negative. In 1997, she was a college senior, at a good weight. To our surprise, she was diagnosed after participating in a family screening study. One of my sons was also tested at that family screening. He had no symptoms and the test results were negative, as expected. A year and a half later, he was screened again as a part of a family genetic study. We were all shocked when his antibodies were totally positive.

Both my son and daughter were completely asymptomatic, yet their diagnosis was confirmed with positive biopsy results…I was so surprised by the results of my children’s screenings that I wrote the article – ‘Don’t try to Guess Who is the Celiac in Your Family.” (Sue Goldstein, founder of the Westchester Celiac Sprue Support Group) (Green 29-30)

The range of experiences leading up to diagnosis is mind-boggling. The only gold standard for diagnosis in the United States is biopsy, which is extremely tricky since it is often unreliable. Green states:

You can have celiac disease and still have negative blood tests…You can have negative blood tests and develop celiac disease later in life…If you are not ingesting much gluten, your antibodies can be negative and you can still have active celiac disease…The physician may also biopsy sections of the mucosa that are normal and ‘miss’ the celiac disease (Green 47-9)

In order for a correct diagnosis, most individuals do a “gluten challenge.” This entails eating enough gluten for long enough to induce a significant amount of flattening of the villi. As cited, biopsies are not a perfect science. The doctor has to find the damage using only a scope and is often missed. Some Celiacs have multiple biopsies before confirmation of damaged villi. Also, some people are unable to do the gluten challenge and therefore unable to get the “gold seal of approval” with a recognized diagnosis. Green states, “The gluten challenge is an area of controversy. For one, people with positive blood tests and inconclusive biopsy often do well on a gluten free diet, and some health care professionals, consider this a positive enough diagnosis of celiac disease….In addition, a gluten challenge may be dangerous for some patients because the reaction may be severe” (Green 53). 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. Unfortunately, the difficulty in diagnosis affects the overall health and well-being of those with celiac disease. In order to understand celiac disease better, we must continue to study the diagnostic experiences of individuals that have been diagnosed.  

When I was diagnosed with celiac disease in 2005, I felt relieved and angry. I was angry at my parents who called my a hypochondriac, I was angry at the doctor who decided I had an eating disorder, I was angry at all of the doctors that didn’t even attempt to explore celiac as a possibility. I was relieved to have an answer, and I was confused as to what that meant for me. At the time, I didn’t know how hard it would be to “just eat gluten free.” Doctors seem to think that its easy, not recognizing how sensitive we are to cross contamination. I had no idea that the “future me” would suffer greatly from gluten contamination of my thyroid medicine. I had no idea that the gluten free diet would become a fad and the butt of jokes. What I did know is that I felt betrayed by the medical community and their lack of ability to diagnose me sooner. With celiac disease being one of the most common autoimmune diseases in the world, we need better protocols and more empathy among medical practitioners.