Celiac is Hell. But It’s Nothing Compared to Living Undiagnosed.

undiagnosed celiac

Hello everyone. It’s good to be back. Vacation was awesome and quite medicinal. I’ll tell you all about it in a future post, but for now I am in catch-up mode with my life a bit.

So today I thought I’d share an unbelievable story about a woman’s amazing journey of living the life of an undiagnosed celiac.

A quick set up: I posted an article on my Facebook page yesterday from the Washington Post about a woman who needlessly suffered for years before finally being diagnosed will celiac disease. When I shared the article, I also posted a link to my Doctor Horror Stories page, where many of my fellow celiacs have posted their journeys.

Well, I got a few more submissions yesterday, two of which practically brought me to tears. It was either that or the raw onion I was eating, but I’m pretty sure it was the story.

Anyway, here’s her journey. It’s a bit long, but I promise it’s worth the read. It saddens me to no end that people have to needlessly suffer like this when a simple test can provide all of the answers. A cynic would say that since there is no money in it for the doctor, a celiac diagnosis isn’t profitable and therefore is not always checked. As I’ve said before, good thing I’m not a cynic.

Take it away my fellow celiac…

First, thank you for asking us to tell our stories. Reading that Washington Post article, I felt like it was written about my life.

Since I was little, I was always sick, always having tummy aches, always throwing up or having diarrhea, always complaining of pain, injury or other unexplained illnesses. Every virus or bug, I caught it. The most common response I heard was to “stop being a baby” or that it was “growing pains” and it would by pass. I remember being about 10 years old and going shopping with my parents and crying the entire time because my feet, knees and legs hurt so badly. My father ended up carrying me on his back (a 10 year old is not easy to carry) to help relieve the pain. After being diagnosed as an adult, my mother commented that she thought I was just making it up all those years, trying to get attention, and apologized for not taking me more seriously sooner.

My worst period pre-diagnosis was between age 13 and age 22. By middle school, I had already had 12 fillings in my teeth even though I brushed twice daily and didn’t really drink soda. I had come to be known by my teachers and classmates as the girl who was chronically injured and chronically tardy. Only I wasn’t always late to school, I often was stuck in the bathroom praying to God it would stop before first class started so all I would miss was homeroom. I was sick constantly. Roughly 2 to 3 days a week I’d have an episode of sickness – usually diarrhea, sometimes vomiting, sometimes both – that would last anywhere for 1 to 8 hours. I had chronic migraines that I never told anyone about until I was going through celiac diagnostic tests. I thought no one would believe me and, like everything else, I would just have to learn to live with it.

My primary doctor had decided I had IBS (translation: she didn’t know what it was) and would just throw a different medication at me every time I’d land back in her office because I needed a doctor’s note, yet again. But no med she put me on for IBS ever worked and I just kept getting sicker and sicker. One example that sticks in my head was my senior year of high school when my bible quizzing team was headed to the national championships in Indiana. We were somewhere in Ohio and had to pull over at a hotel because I was sick. I spent 3 hours in the bathroom while my entire team waited in the parking lot. Everyone was upset with me. Several members wouldn’t talk to me. My mom kept checking on me and asking how I was. The hotel employee kept suggesting we call an ambulance. And we were late arriving to the championships, which prevented us from taking 1st place.

During that decade of my life, I was called “skinny fat” after I shocked the shit out of my classmates when I didn’t have a baby. I had skinny little arms and legs but a huge protruding belly from being constantly bloated and malnourished, so much so that everyone thought I was pregnant. When it turned out I wasn’t with child, they called me the skinny fat girl. I would wear baggy clothes to try and hide my gut and hated wearing dresses and NEVER went swimming because I was so embarrassed.

I spent my 4 years of high school in adaptive gym because I was always injured. I tore the same tendon, the plantar fascia, three times in each foot. I also broke the sesamoid bone (you’ve probably never heard of it, it’s the small bone in the ball of your foot) in both feet, and was diagnosed with tarcel tunnel – which is like carpul tunnel but in your feet. It is rare in teens. Needless to say, I am really good at ping pong and shuffle board because I spent 4 years playing those while everyone else ran track, played basketball or softball. By my senior year, I was told by my podiatrist that if I would likely not walk by age 40 because of the chronic issues in my lower extremities.

During those years, I was also a holy terror. I could not control my emotions, so I rarely spoke. Because I was so quiet, and because when I did speak was not nice, I had only a few “friends.” Of course, my parents and doctor chocked my attitude up to being a teen and having hormones. But I’m pretty sure my mom constantly wondered where she went wrong as a parent because she I would have weekly knock-down-drag-out fights, usually about nothing. Between the constant pain, the headaches, the sickness, the frustration, the stress from always being late or having to catch up, AND the hormones, I was a short fuse. But no matter what, I couldn’t’ control my fuse. Even birth control didn’t help. I would cry for no reason, become enraged over nothing at all and would often feel like I was watching this girl flip out only to realize it was me. I hated who and how I was but I felt helpless because I could do nothing to stop it.

Like the woman in the Post article, I was hopeful that college would be different. But based on my rough math, in the 5 years it took me to graduate, I missed about 30 percent of my classes because I was so sick. By my junior year, I had my own Americans with Disabilities coordinator who worked with me to get special accommodations that allowed me to miss classes due to my unknown-at-the-time illness without repercussions. The ADA order I obtained, signed by the VP of Student Affairs at my school, also required my professors to allow me to make up tests or anything I missed due to being sick. For the first time, it felt like someone believed me, someone listened.

My ADA coordinator was a blessing. He pushed me to keep seeing different doctors and identify what was plaguing me. He went to bat with the administration when they denied my request to move off campus early so I could live somewhere with a kitchen and prepare all of my own food. See, my college required all students live on campus through their junior year unless they lived at home with their parents. You also had to buy the meal plan whether you lived on or off campus. My parents lived too far away, and I didn’t eat the food. My mom was worried after she learned I spent an entire year living off canned green beans, carrots, pita and hummus because that made me less frequently sick. With my ADA coordinator’s help, I got my waiver and was able to both move off campus and not pay for the meal plan. Most of my professors were extremely sympathetic when I would miss class, run out halfway through or come in late looking like death washed over me. It was becoming clear to people that I was not faking it. That is because it was also getting worse.

The summer before my 5th year of college, I came to my mom in tears. I had just been reprimanded by my boss at work for being late and disappearing for hours at a time, and was told I had one more chance or I was fired. Shit was real. I told my mom I wanted to do whatever it took to make this stop and that I couldn’t live like this any more. I knew it would cost a fortune (and did) but she said yes. We spent that summer at various doctors until I landed at a gastroenterologist. He first tested me for just about everything under the sun – Crohns, Colitis, ulcers, gastroperesis, H.Plylori, Giardia, Ulcertive colitics, colon cancer, intestinal cancer, stomach cancer – and I drank more barium than is probably safe.

Then the doc said he was running another blood test. A week later, he called me in and said he needed to repeat it, because the number was too high and he thought it was an error on the lab’s part. When it came back the same, he said the test indicated I had Sprue, also known as Celiac disease, and he needed to do more tests to be sure. He went out of order, but regardless, after cutting out gluten and having the biopsy, he called and said “You have Celiac disease. The only treatment is to follow a strict gluten free diet. Follow the diet and come back and see me in a month.” In a month, I walked into his office, feeling better than I had in years, possibly my entire life. It took several years to truly feel well and to heal, but it was clear to me within days that we finally figured it out. I remember crying because I was so happy. It would stop.

Yes, the struggle of living with Celiac disease and eating gluten free is real, but it is nothing compared to the hell of living undiagnosed with this disease. I am so thankful that doctors are starting to learn how to ID this so hopefully people don’t have to live as long as I did with the pain and suffering this disease can cause.

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15 thoughts on “Celiac is Hell. But It’s Nothing Compared to Living Undiagnosed.”

  1. Your story really touched me. my symptoms did not get as severe as yours until my 20s. During college I had diahrea 3 to 5 times a day. I had chronic migraines as well. It didn’t really get really horrible until my first job and I had just left home. I started having severe balance problems, and it felt like my brain was in slow motion. It’s a miracle I wasn’t fired. I began having severe abdominal pain and wicked acid reflux. I ended up having to move back in with my parents at the age of 26 because I couldn’t function anymore. I went through all of the testing as well and they never found anything. I was diagnosed with IBS and GERD. The balance issues and diahrea continued for the next 12 years. I spent various times talking with my PCP trying to figure out what was going on. I was tested for c Diff a couple of times due to the severity of the diahrea. I kept having abnormal liver results as well with no known cause. Finally, after years of misdiagnosis I had a new job at a new company with different insurance. All new doctors. My symptoms had gotten to the point where I was in agony. I was sent to a GI specialist, his time after numerous tests they finally found something. I was so grateful. They diagnosed me with Celiac and I am now GF 18 months and am symptom free! Follow up testing showed I had low vitamin D and osteoporosis. My teeth have been falling apart as well. I had 6 cavities the year before my diagnosis and 9 the year of. I look back and feel like I was cheated out of my 20s. The one thing I am so grateful for is that no one ever made me feel like it was all in my head. Everyone around me was extremely concerned.

    1. It occurred to me I didn’t relay my lowest moment. On my wedding day with future wife waiting for me to get up to the altar so that she could do the procession up, I was stuck in the bathroom doing what undiagnosed Celiacs do on a routine basis.

  2. How horrible to have lived through all that, but so wonderful for you to share. You may be helping others by doing so. My question is…why, with all of the new information and research going on, is testing for Celiac Disease so far down a doctor’s list??

  3. I can’t recall the last time I read something that hit home so deeply with me. Thank you so much for sharing your story, for opening up and allowing us to see inside your pain and struggle. I’m so glad you’ve found your happy place after all these years.

  4. I had a very similar experience to this woman. I went roughly 20 years before having a holistic doc tell me (within 15 minutes of speaking with me about my multitude of symptoms) that I needed to eliminate gluten from my diet. I never got tested. I just cut out all gluten. Within 2 weeks, I felt like a different person. I refuse to purposely eat gluten again, so I won’t be having a blood test or biopsy. Just feeling human again is good enough for me. Those years of not knowing why I was always sick were truly awful though.

  5. Her story resonates with me. in many ways. I was diagnosed 10 years ago, I am now 48. By then the disease had done a lot of damage to me. Migraines, bad teeth (even though until adulthood I was monitored brushing and flossing I had fillings in all my back teeth, even my baby teeth, and my parents didn’t get me a lot of junk food). Pain in my feet, my back, hips. Feeling nauseous most of the time growing up, so much so that I’d learned to accept it as normal. Got a stomach virus every year; sometimes it was so severe I burst blood vessels in my eyes. Days of diarrhea, knowing where every bathroom was wherever I went, and having the ability to find one quick in unfamiliar places. Things smelling like dying cells coming from me. By the time I was diagnosed i really thought the allergist was going to tell me I needed to see my doctor and get my affairs in order. I had hives frequently with no apparent cause, so my doctor sent me to get tested; along with celiac disease I am allergic to about 45 other things. she didn’t even have to do the biopsy to know, I had just about every celiac symptom there is. Now, although I feel much better off the gluten, when I am accidentally glutened the reaction is worse. I have few teeth left because they simply dissolve over time no matter what I do; I have a partial but will need dentures soon. My hair has thinned too early. Other side issues of gluten and other allergies, such as gallstone, kidney stone, low blood pressure, I have them all. I am glad I Was finally diagnosed, because my quality of life is better, and because living with it undiagnosed is pure torture, especially because many doctors check for everything else but celiac, not because they are avoiding it, but because they are used to not looking for it. So not only do we suffer all the time, but then we begin to think we are crazy and it’s in our heads, so we suffer in silence. She is fortunate-her mother did apologize and acknowledge her illness once diagnosed; my family prefers to believe mine doesn’t exist.

  6. So much of this is familiar. I was fortunate that I made it through most of my childhood with “just” stomachaches (we ate very little processed food growing up, which is my only explanation). Once I hit college with pizza and beer, the symptoms started. Then the years of doctors (including board-certified gastroenterologists) telling me I had “atypical IBS” because my symptoms (vomiting, hot and cold sweats, crippling stomach pain) really didn’t fit IBS but they had no idea what I had. Several doctors told me it was just stress or that I wanted attention (trust me, I have better ways of getting attention than vomiting). At the time, I did not connect my vertigo, chronic anemia, and hives/boils to my stomach issues, just thought they were more stress-related issues. When I finally self-diagnosed and found a doctor who specialized in celiac, she reviewed my records and said, “I almost don’t need to test you, everything you’ve been telling the doctors all along shows me you have celiac.” I consider myself very fortunate to have been diagnosed and to have regained my health on a gluten-free diet. The thing that makes me the saddest is doctors who have no clue and make us feel like we are the crazy ones.

  7. Hillary Kingsbury

    I can so relate to this! I am 23 and living in a nursing home because of my medical complications due to undiagnosed celiac. It sure is hell!

  8. I think I had it for 30 years before diagnosis, at least.
    A younger cousin was diagnosed when I was about 8. Mum asked the doctor, who said it wasn’t possible, because it was always diagnosed before a child turns two.
    So, with coeliac disease ruled out, I had unexplained: mouth ulcers, anaemia, pms, ibs, rheumatoid arthritis, condromalacia patellae, tooth enamel deficiencies, post infection malabsorption syndrome, chronic fatigue (and probably hypochondriac) on my medical history.
    Then I got a tummy bug. After a fortnight (with no improvement) I went to the doctor. IBS, said he. Have some tablets. I’ve taken those, said I, maximum dose for 2 weeks, they don’t do anything. Ah yes, said he, you need to take more of them, the real maximum dose is much higher, have lots.
    A few days later I had run out of pills, and was still losing 8ounces every day, so I went back. I feel terrible, said I, and I can only work because my desk is nearest the loo. IBS, said he, take your pills. But the pills don’t work, said I, I’ve taken all the pills you gave me. Oh, said he, maybe we’ll do a blood test.
    A week later, and another 4lb lighter, I see him again. You are anaemic, said he, probably the IBS, but I want to do another blood test.
    A week later (and another 4lb lighter) I tried to speak to him. But his dragons protected him fiercely. You cannot speak to the doctor until your blood test results are back, said they. We don’t know why you are worried, it’s only IBS.
    Another week went by, and the same thing happened. So I went to the pharmacy to buy a cork.
    You do look ill, said she, come through and tell me about it. When she had finished listening she said: have you heard of coeliac disease? Stop eating gluten, and join Coeliac UK. So I did. And I felt better.
    A few days later, the doctor called me. Have you heard of coeliac disease, said he?

    1. Sometimes, doctors make me sick. Figuratively, and literally. Glad you finally have a diagnosis. Took me 38 years undiagnosed, with all sorts of similar maladies-my favorite was the tooth enamel thing…parents watched me brush and floss, had dentist visits every 6 months as recommended, still had fillings in both my baby teeth and adult teeth, yet I was the horrible person to blame for it all, because I must not have been brushing my teeth or caring for them. In any case, I hope you have since moved along to another doctor now that you have your diagnosis, and perhaps an allergist as well, they are sometimes a great help.

    2. I know this is an old thread but I’m only just reading it now and I love how you wrote your post, the said he’s and said she’s were funny as. I had this real mental picture of a doctor going, here take these pills, in such a condescending way as they do too. If this was facebook, I would be liking the shit out of your post

  9. Reading that was brutal. I’m so happy to have a reason for all of the years I spent sick, exhausted, miserable, and emotionally wrecked… But it also really bums me out to wonder what my first 20 years of life could have been if I’d never, ever experienced gluten.

  10. This really resonates with me. I was diagnosed a little over 6 months ago after 4 years of chronic pain in my lower extremities, along with numerous visits to specialists, and 2 surgeries. Not ONE of the doctors I saw suggested celiacs, it was my own mother who suggested I get tested. I am still in so much pain, but finally my antibody levels are falling. Reading her story gives me hope I can feel better again, but I am so angry that doctors let this disease wreak havoc on my body for so long.

  11. Thank you all for sharing your stories. It’s really nice to hear I’m not alone…

    I’m 50, and got diagnosed almost 2 1/2 yrs ago, but they believe I’ve had it since childhood (looking at the list of symptoms and related ailments, I think at least since high school, but possibly earlier). I’ve had several doctors over the years likely think I’m a hypochondriac. Walking into the drs office, and have them look at me and say, “Ok, what’s wrong with you NOW?” Even my own GP wasn’t the one to send me for the test, it was a walk-in clinic dr, even after having my iron so low I was passing out at work (and eventually having to undergo several rounds of IV iron infusions at the hospital). It’s a simple checkmark on the blood work panel, why is it so hard for them to choose it?

    After having been gluten-free since diagnosis, because I had it so long and so much damage to my system, I’m still having issues that now I’m undergoing testing for several other secondary autoimmune diseases (Hashimoto’s, MS etc.) I wonder when the pain will all stop, when I will ever feel healthy or any sense of “normal”. Some days I want to tell my partner to just give up on me, because I feel like I’ll never be able to do “normal” activities (I developed osteoarthritis in both knees around age 20, have had 5 reconstructive surgeries as well). I used to be able to walk, swim and cycle but now have possible metatarsal fractures in my one foot from setting it down wrong when biking (also possibly supplemental side effect from the disease-weak bones) so now with COVID I’m stuck at home watching too much Netflix.

    Has anyone else had more than one autoimmune disease develop from long-missed diagnosis? I feel a bit at a loss at the moment, and struggling to see the light at the end of the tunnel. Any feedback or suggestions would be much appreciated. Cheers.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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