My Celiac Story – Part I: What IS Celiac Disease?

Celiac’s Disease is a hereditary digestive disorder involving intolerance to gluten. (It is basically a severe allergy to wheat gluten.) It is a member of the autoimmune disorder family (which means that when your body realizes that something – such as a cold or a tummy bug – is attacking, your body attacks itself instead of attacking the bad germs). 

General symptoms of Celiac’s Disease include diarrhea, bloating, gas, swollen ankles, anemia, fatigue, Vitamin K deficiency and excessive bruising and bleeding. Sounds lovely, eh? And there are SO many more things that can be related to the disease – each person can react differently. And since Celiac Disease is an autoimmune disorder, persons with the disease are very susceptible to developing additional autoimmune disorders.

For me?


This is my story. It’s a story that most people don’t know, and that has always been very difficult to recount, until just recently. There is so much pain (physical and emotional) associated with this story for me, but I see it like this: if I can help just one person by telling this story…then I’ve been able to take a step in the right direction. Hopefully, I’ll just keep on taking those steps!

I was 18 years old, and had just finished my first semester away at college. Lee University in Cleveland, Tennessee, to be exact. I was flat out exhausted from the exams I had just gone through, not to mention the tour I had been on with the Ladies of Lee Choir. I hadn’t been home since I left in August, and I was thrilled to be back for Christmas break!

But about halfway through my break, I realized that I should have felt at least a LITTLE more rested. And I didn’t. And I couldn’t chalk up the constant sick-to-my-stomach feeling to the cafeteria food anymore. I was home, eating mom’s cooking  and sleeping in my own bed – I should have been fine.

In fact, I distinctly remember that I had a friend come from out of state and stay with us for a few days during that break. She didn’t understand why I didn’t want to go out and have fun – and I remember telling her, “I just feel SICK.” 

When it came time to go back to Lee, off I went. My roommate drove us back from Florida, and I slept the entire time. She was just as shocked as I was. And yet…I didn’t feel any better.

Within about a week of returning, I was so sick that I couldn’t even attend my classes. (Which was a HUGE deal for me – I loved school, and I enjoyed doing well. To be one week into a semester and have not even met some of my professors yet was NOT cutting it.) I was completely frustrated, and yet all I could do was lay in bed, saving my strength for when I needed to get up and run to the bathroom. To be perfectly honest, the majority of the time, I was crawling to the bathroom.

My roommate was sure  I was dying. I cannot tell you the number of times I woke up in the night to see her hovering over me. “Just checking to make sure you’re still breathing,” she would tell me.

My friends knew something was seriously wrong. Our dorm room window was right on one of the main walkways, so most times our friends would stop at our window and knock (if we didn’t have it already open) and catch up throughout the day. One particular day, a friend stopped by, and as he leaned in the window to check on me, his eyes got wide and his mouth dropped open. “Good God,” he breathed, “You look horrible. I mean, I’ve never seen you look so awful!”

Looking back, these memories are kind of funny…but I assure you, they were NOT funny at the time. I felt horrible, and I was scared out of my mind.

Medical report

About 2 weeks in, with a friend on either side of me to steady me, I went to the clinic on campus. The clinic folks had no idea what to do with me. All they could say was that I probably had a bad stomach bug, and that I should eat crackers and drink Gatorade until I felt better. My friends took me back to the room, put me to bed and left…then returned with every flavor of Gatorade they could find, and every kind of cracker known to man.

And I just kept getting worse. In fact, over those two weeks, I dropped 40 pounds. Yep, you read right.

At this point, my symptoms were:

  • Nausea
  • Diarrhea
  • Tremors 
  • Extreme stomach pain
  • Tightness in chest/inability to catch my breath
  • Extreme fatigue
  • Hair loss

(I pretty much told everyone that I had food poisoning. That about covered it.)

I had been on the phone with my parents quite a bit during this time, and had been doing lots of consultation with our family doctor. We all came to the general consensus that I needed to go home where my parents could care for me and I could see a specialist. I was so disappointed, but so sick. I was at the end of my rope.

I will never forget the relief I felt when my dad arrived at the door of our dorm room. I burst into tears and collapsed in his arms. Within the day, he had packed up all of my things and checked us into a hotel that night. He drove me home the next day. I was devastated. This was NOT how being a college student was supposed to be.

Syringe and blood vial

The next 6 months were a blur. The doctors were fairly sure I had some kind of an allergy, but they weren’t sure WHAT kind. They told me if they didn’t figure it out, I would die. Doctors and tests and hospitals and surgeries…for six solid months. To be 18 and dealing with all of that was not ideal, as far as I was concerned. I would start to feel better, and then suddenly I would become worse than before. It was horribly disheartening. And it was then that I battled serious depression.

My dad had this knife collection on the bookshelf in the living room. They were all different kinds, with the fancy ivory handles and the engravings, and the sharp, sharp blades. The pain I experienced normally came at night, for some reason. I would get up and pace through the house, trying to move around, hoping it would help to ease the awful pangs. I would stop at that bookshelf and handle knife after knife, thinking of how easy it would be to just end it. My stomach already hurt so badly, plunging a knife into it surely wouldn’t be much worse. There would be no more confusion, no more depression, and my parents would no longer be worried…I formulated all kinds of plans. But I was never able to make it happen.

When they finally gave me the diagnosis of Celiac’s Disease, no one knew what that was! It wasn’t a common thing like it is now, and “gluten-free” wasn’t a fad-diet that anyone with a brain could follow! We literally had to start from scratch.


Thank God for my mom, who did SO much research and experimented with SO many recipes for me. I have no idea how she pulled out of her hat everything that she did, but grateful doesn’t even begin to describe it. She was absolutely amazing!

And I started to feel better. I wasn’t thrilled at adjusting my diet, but hey – it was working! I started being able to keep food inside me after months of it washing right through my intestines. I started gaining strength. I could take showers again instead of having to lay in the tub for lack of strength. My hair started to grow thick again. And the pain. The pain eased to a level that I could actually bear.

After the better part of a year…life was started to get back to normal. Well, a new kind of normal. And I was okay with that! Currently, it has been 10 months since I have had a “bout” with my Celiac’s, and for that, I am SO grateful!

Looking back now, I remember all of that as being a horrible blur on the timeline of my life. I don’t wish it upon anyone – and I am VERY glad that it’s behind me. But I’ve chosen to use the experience as a way to help others. 

Do you remember me mentioning at the beginning of this post that since Celiac Disease is an autoimmune disorder, persons with the disease are very susceptible to developing additional autoimmune disorders? Well, last year, I was diagnosed with Hypothyroidism, which is indeed another autoimmune disorder, so things are progressing along as cautiously expected. I’m thankful that this condition was caught very early, and has a very simple treatment: one pill with a glass of water every morning. It could have been so much worse.

I don’t know how many people will be helped from reading my story, or checking through the resources here on the blog, or asking me questions, or just talking and letting me listen. I hope many. But even if I can only help a handful of people…it will all have been worth it!


Due to the amount of comments from all of my wonderful readers, it is not always possible for me to respond to each one. However, I absolutely do read them all, and if you’d like to address something specific, or have a question for me, please don’t hesitate to email me at I will respond to your email as soon as possible! Thank you for visiting the blog!

35 thoughts on “My Celiac Story – Part I: What IS Celiac Disease?

  1. What a scary thing to go through. I can not imagine being sick for so long and not knowing what was wrong. Thank God you finally got a correct diagnosis. And thanks for sharing your story. I’m sure it will help many!

  2. Wow, glad they figured out what it was. I couldn’t imagine. I don’t know anyone personally who has celiac but I’m glad to read more stories and sharing awareness

  3. What a terrible time you had until you found out what the problem was. I can imagine how bad the pain must have been if you wanted to end your own life. It’s great to read your experiences, although I don’t suffer the same complaint. But, it’s helped me understand more or what people go through.

  4. Thanks knew you were gluten free but had no idea why and did not know what this disease was. What a scary story my friend. But Praise God for his goodness in revealing what you had and you getting the help you needed.

  5. My youngest daughter also received a Celiac diagnosis about 2-3 years ago. She also recently had her gall bladder removed, and is doing better overall by making necessary lifestyle changes.

  6. I knew someone a LONG time ago that discovered she had this and I always thought it was so foreign. It’s amazing how much more known it is and common in so many people.

  7. Hi Kristen,
    Thanks so much for sharing your story 🙂 My mother has the same celiac disease, but I did not know that much about it, until I read your post, tons of great info 🙂

    Learned a lot!

  8. My daughter has celiac disease. She was diagnosed in college as well. She was diagnosed right before the gluten free fad, so it got easier once more gluten free food started popping up.

  9. I cannot eat wheat, dairy, gluten, sugar, soy, nuts & fruit… And STILL suffer from severe stomach aches at least every other day… If not on the daily. 🙁 I also don’t have a large intestine, so I completely feel your pain.

  10. I had no idea you had gone through anything like that. How horrible for you. Life with Rory has been a roller-coaster like this since she was born. I know exactly how frightening and hopeless things can seem, especially when there is no diagnosis. So glad they figured it out for you. Your story is empowering and inspirational. I know it will help people–with and without Celiac’s disease.

    Life With Lorelai

  11. Thank you for sharing your story with us. I have a friend that is going threw tests to see if she has Celiac’s Disease .

  12. Very scary, but informative post indeed! This is the first time I have heard about this celiac disease. There is nothing more important than your health. Your post is very helpful to know more about the disease & create a huge awareness as well. Thanks for sharing your story.

  13. Kristen,
    Thanks for sharing. I can so relate to several of the symptoms, including the depression.
    I have hypothyroid too.
    And I bruise so easily, in college I was convinced I had luekemia.
    So grateful to God for you finding a diagnosis.

  14. Bless your heart … what an awful experience!! I have heard of it taking lots of time before getting the diagnosis for others, too. I’m so glad your doctors figure it out and you were able to get back on a path of health again.

    It’s good to be able to share our painful stories and help others, I have found also. It gives some purpose to the pain so it doesn’t feel like it happened “in vain.” I hope you are able to learn of many who are helped by your story.

  15. We have a friend with Celiac’s, but I’ve never really heard him speak about it much. I had no idea how awful it could be, or how scary it would be to not know what it was! I’m very glad you didn’t do anything drastic during that scary time.

  16. Wow! What a horrifying experience. Nowadays, Celiac’s disease is the first thing they check for when you have GI issues. Crazy! I still remember the first person who told me they were allergic to gluten – “Huh? What’s gluten?” was my response. Then a few years later it was all the buzz. Thanks so much for sharing this! Now I know a good place to send people who I know struggle with this as well. Ironically, did you notice that Lorelai featured a gluten-filled muffin this week. 😉 I giggled. Thanks again for having me as a co-host this month at #HomeMattersParty

  17. Kristen, thanks for sharing this important real life story. What an awful time you went through getting a diagnosis. Doctors seem a bit more aware these days. I don’t have celiac, I do have the hypothyroid problem, but I have gone gluten free and low carbohydrate, I feel better than I have felt in all my life. All the best for you Kristen going forward.

    I am enjoying co-hosting your great party,

  18. Thank you so much for sharing your story! My aunt has celiac’s but I never knew too much about it. Thank you so much for teaching us all of this!!

  19. I was diagnosed with celiac in 2012 after having it for a while. My weirdest glutening symptom is depression. I get really, incredibly depressed when I ingest gluten. I feel so much better after going gluten free.

  20. When I was younger and a nanny for twin boys, their mom had undiagnosed Celiac Disease. I remember her being sick like you were. She was like that all the time. I felt so bad for her. When she was finally diagnosed, I was there that day. She came home from the doctors with a stop to the grocery store on the way home. She literally had a car full of new foods that could eat without getting sick. The fridge and cabinets were emptied and replaced with the new food. She was still sick, but she was so happy to find out what it was and how to get to feeling better.

    Thank you for sharing your story at #ChronicFridayLinkup! I pinned your post to the Chronic Friday Linkup board at

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