My Celiac Story – From Anemia to Recovery
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Everyone has a story. If we’re willing to share it, we can aid others in their own life’s sagas. If my journey through disease, diagnosis, and recovery can help just one person, it will be worth it. If this Celiac story sounds familiar to you or of one you love, please encourage them to get a proper diagnosis.
Celiac Symptoms in Teenage Years
My Celiac story and journey of noticeable symptoms started when I was in high school. Every day after lunch, I would struggle to stay awake. It happened every day like clock work, in French class. Madame Ross was gracious enough to let it pass many times and let me sleep. It wasn’t until years later, after diagnosis, that I realized that this was a side effect of my anemia. (This was due to the malnutrition caused by my damaged villi.). Mme. Ross, where ever you are, Merci Beaucoup.
During high school, I also had a number of chronic yeast infections. Every time they would test me for diabetes, as my grandmother was diabetic. Each time, it would come back negative. I just chalked it up to being “normal” for me.
Chronic Fatigue In College
My Celiac story involved a larger set of symptoms as I got older. In college, I worked my butt off to get good grades. I often was taking a class load of 20 credits, AND working 20 hours a week. In general I felt okay. Headaches often plagued me and felt I always needed a nap. Halfway through my college career I started to have really bad abdominal problems.
My bowel movements seemed to be abnormally large. It was rather embarrassing, and my roommates didn’t seem to understand what my problem was. (How could they when I didn’t understand myself?!) I just assumed that I wasn’t eating enough fiber. Therefore, I started eating shredded wheat and oatmeal as much as I could, thinking that would alleviate the symptoms. In retrospect, that was definitely not the solution.
Anxiety and Anemia: Precursor to a Diagnosis
Finally, towards the end of my college career, the anxiety disorder started to kick in. It was during this diagnosis that my physician’s assistant noticed that I looked rather pale. She had the lab draw some blood and tested my iron and hemoglobin levels. We both stood shocked at the results. My doctor said that my ferritin was so low that I shouldn’t even be able to stand up or walk. My (undiagnosed) Celiac story starts to change from here.
From there she sent me to a hemotologist, where I would get daily (painful) iron injections. They did this because it was obvious my body was not absorbing iron from my diet. I went through a series of other tests during this last semester on campus.
Everyday I was nauseous. I would throw up bile in between classes. This phase of my Celiac story became almost more than I could handle. Again, I was blessed with great, understanding professors at Central Michigan University. It wasn’t until the end of my stay there that the hemotologist directed me to see a gastroenterologist. Since I would be going home to do my student teaching, I would wait another two months before a diagnosis.
Finally, A Celiac Disease Diagnosis
What happened then was rather surprising. My mother had been a employee at Ingham Medical for over 20 years, and knew all the best doctors. She went with me to my appointment. At this time she told the gastroenterologist that my dad and my grandmother both had Celiac Disease. Therefore, she figured that this was my ailment.
What? My dad had been “sick” all this time and I never knew about it. How was this possible? For starters, neither my dad nor my grandmother every talked about it or followed the dietary restrictions that it required. I later learned the army discharged my dad because they could not accommodate his dietary needs. When I learned more about Celiac Disease, I grew concerned for my dad’s health. I pushed him all the more to stick to the diet.
Because of my my own lack of knowledge of my family history, I make sure to let everyone I know about Celiac Disease, and about its genetic component. If you have Celiac Disease, someone else in your family HAS to have the genes for it. Therefore they should ALL be tested.
Passion for Celiac Disease Awareness
Sometimes I wonder how my life would be different had I received my Celiac Disease diagnosis as a child. At the very least I would have been spared from some of the disease’s symptoms. For example, the joint pain that my mom just assumed was growing pains may have been alleviated. I would have been spared the many cavities due to the lack of enamel on my teeth. Obviously I would have preferred avoiding the bathroom embarrassment I incurred during my college years. I often think it’s no coincidence that my birthday is September 13th, which is National Celiac Awareness Day.
So if I seem to go on and on about Celiac Disease at times, or I seem to think that everyone should be tested, don’t get frustrated with me. It would be my honor if I could help you understand the causes of some of your ailments. I’d be overjoyed if I could lead you on the path to recovery. I know not everyone has Celiac Disease. However, maybe if you know more about it, maybe YOU can help someone else out.
What’s your Celiac story? Was your diagnosis quick or did it take years? Please feel free to share your symptoms so we can help educate others!
I didn’t realize that you had the same iron issues I did too! My hematologist had me do two infusions of iron about 4 weeks apart, before I was ever diagnosed. I was my own best advocate (thanks to an article my MIL found) and asked my primary to test me for Celiac – my hematologist never did!
Drives me nuts that doctors don’t try to figure out the “why” and just give meds. Egads. Glad that you were persistent!
Thanks for the post and yes it was a long trip before I had been finally diagnosed at the age of 25, twenty five years ago now. Anemia was the main symptom, through years, but none of my family had it or have it actually. And I try to spread information and awarness around me, of course 🙂
So glad that you were able to finally get a diagnosis!
I have a similar story, years of ferritin infusions and college years spent exhausted getting my BSN. I had numerous issues with pregnancies and miscarriages but do have 3 healthy children who have tested negative for Celiac disease. For around 8 years i struggled with migraines, they would take me out at work! Luckily the Dr I worked for would give my a migraine cocktail and i could rid them fast. But after 5 pregnancies and only 2 live births my weight was drastically low and my blood results kept coming back worse and worse. I also was losing my memory, my child’s birth weights, froends from childhood, or where I was headed whwn I got in the car. I was so embarrassed because I was a nurse in town who remembered everything about my patients and I currently could barely remember my boy’s birthdays. I am very that while an infusion my hematologist/oncologist came in. She was concerned how much weight i deopped and scared I had a pituitary tumor but wanted to run a few labs first before getting a scan. And sure enough my numbers all had greater than symbols for everything Celiac! Finally a possible diagnosis! Off to U of M gastroenterology I went, biopsy done in a couple days and was told mine was the worst they had seen. I was so in shock and not aware of Celiac at all really, so on our way home we shopped for a few GF items and tried to make the best of it. But once I got home I was overwhelmed. I stood in my pantry and kitchen crying, I love food, especially bread! I love trying new restaurants! I love fast food! What was I going to do? Let me tell ya, seeing a counselor was the best thing I could have done. No one in my family understood, my friends kinda looked like I was nuts, and I needed to vent. Luckily now after almost 3 years I am again healthy following a strict gluten free diet and love helping others learn about Celiac.
Thank you so much for sharing. I especially appreciate that you are a nurse, and share how the medical background you have didn’t prepare you for this either. We need to do so much more in educating our health care personnel. You can’t help others unless you’re taught what to look for!
I had issues all my life and was diagnosed with endometriosis after my second child. I numberous surgeries to remove large cysts and finally after 3 surgeries in 5 years a hysterectomy at 43. The stomach issues continued as well as low iron, vitamin D and b12. I was always exhausted! My Daughter complained about her tummy off and on but when my Daughter was 13 she got really bad becoming a vegetarian than vegan. She could barely function the next few months. We took her doctor and specialist appointments. She continued to feel terrible. We finally saw a Natropath who was our saving Grace! My Daughter started a gf diet and I did it with her. We both started to feel better. She was also severely anemic, low b12 and vitamin D like me. Our family doctor than suggested getting a celiac blood test that came back negative and now we know that it was due to a gf diet. We have thought about trying to eat gluten again in order to get tested for Celiac but it would be hard. We both still suffer with constipation yet we eat a very healthy diet! Thanks for sharing your story!
I was just diagnosed with celiac disease 5 weeks ago, at 47. I always needed a nap after I ate, felt bloated after most meals, had seriously embarrassing bathroom issues for over 7 years, and always felt run down. My former primary physician did not seem to care, just told me to increase my fiber, so I did and felt worse. I changed my primary and was immediately referred to a gastrointestinal doctor. My blood work came back normal so I was thinking ibsd, oh well. After the upper scope and the colonoscopy, I got the results, celiac disease and microbial colitis. I’m in the 10% that do not show in blood work. To my knowledge, after asking around on both sides of my family, I’m the only one with celiac disease. I’m still craving bread and getting moody, but doing alright. Reading your journey is helping me embrace this disease. Thank you.
Dear Jennifer,
Welcome to the Celiac Disease community. (Although “welcome” may seem like a weird word to say.) Although others in your family may not be diagnosed with Celiac Disease, it’s still possible they have it and are unaware of their symptoms. All of your 1st degree relatives (parents, siblings, children) should be screened. I’m glad that my blog post has been of help to you. Please know you’re not alone, and feel free to email / message me any time. 🙂
Thank you for sharing your story. It’s quite interesting this disease. I feel it’s one of the most difficult diseases to be diagnosed. I experienced symptoms for many years before being properly diagnosed. Anemia was a big headache in my life. I almost die and the doctors had to “bring me back “. A very scary time for sure. Now, I have more symptoms… too long to list here!
I appreciate your posts, guidance and kindness. Thank you for sharing your story and for reading mine.
thank you for sharing your story. Sadly, I’ve heard too many stories of people being near death prior to getting a diagnosis. This should not be so. Doctors should be more aware and screen for it more frequently.
My diagnosis happened for me not being outwardly sick. And strangely my gynecologist is the doctor who followed up on weight loss and a few years of early age low bone density. So I was sent for the Celiac panel of bloodwork. That showed my vitamin D level down to 3! Yikes! Now he refers me to get an Endoscopy. That confirmed the Villi completely flat. So Malabsorption of nutrient , vitamin, etc. gave me a diagnosis of Celiac. It’s been an eleven year journey of gluten free diet and I am maintaining a healthy life. Following my diagnosis, one year later three of my grandchildren were diagnosed, all in one family. Fortunately, they did not have to go through their growing years being sick before being diagnosed. They all have learned and grown well with a gluten free diet. Their mother, my daughter not Celiac, is a guru on keeping up with the GF diet and is a go to person for many of us in the family. I also have cousins diagnosed, so I believe this is a genetic disease.
Stay healthy. Denise
That’s one amazing gyneologist! So glad he helped you get diagnosed.
And yes, Celiac Disease is genetic. The risk of developing Celiac Disease when a family member already has it is 1/22, vs 1/100 in the general population. My father and grandmother both had Celiac Disease.
Newly diagnosed in September, now having food intolerence. Hearing positive stories helps a lot. Anyone know how to heal leaky gut? Just started happening this month. Anyone know a place I can get gluten free food?
I would recommend trying to find an in person or online gluten free group specific to your area. They will be able to beter help you find groceries.