What is Celiac Disease and the Gluten-Free Diet? Celiac.com - https://www.celiac.com
Stories of Celiac Disease Symptoms—Both Undiagnosed or Misdiagnosed
Amy Leger

My daughter was diagnosed at 15 months old back in 2000. I have been passionate about celiac disease and the gluten free diet ever since. Now my brother was just diagnosed and during the 2008-2009 school year my husband and I took in a Norwegian exchange student with celiac disease. I have just started a blog called www.thesavvyceliac.com and enjoy sharing my views and experiences with others through my blog.

By Amy Leger
Published on 12/12/2008
When people tell me their story of diagnosis, I always think it's incredible. Sometimes the mystery seems to be more difficult and have fewer "clues" than others. As a result, the missed diagnosis or misdiagnosis takes a toll on our bodies. These stories of diagnosis run the gambit of drama and difficulty, but they are good to share so we can empathize and learn from as a celiac community.

Celiac.com 12/12/2008 - The tales of diagnois for celiac disease are almost always dramatic: Some people go for years dealing with aches and pains and thinking that this is just the way their body was built. I remember feeling that way when my one-year-old was so crabby—walking around with her big old “Buddha” belly. Recently, I requested the top three symptoms from adult and child celiacs to put together a survey of the top symptoms on my blog. I didn’t ask for the diagnosis stories, but people offered some insight into the trials and tribulations of getting diagnosed with celiac disease—and eventually leading a new and healthier life!

It took a major virus, three doctors, x-rays, blood tests to get to Emma’s diagnosis.One doctor told me “kids throw up” (once every nine days? Really?), a second opinion recommended Milicon for her “gassy” tummy. Luckily, it all ended the way it should have, with a diagnosis of celiac disease that only took about 5 months—which is relatively little compared to some of the stories you’re about to hear.

One woman wrote me describing her daughter’s symptoms when she was diagnosed at age 15, but then she wrote back about the subsequent diagnoses of her sister and mother.Jean was diagnosed at age 70 but she and her family tell me her severe scoliosis at age 12 was a symptom! Can you believe being misdiagnosed for 58 years?Jean even had to be put in a back cast for a time.

Jean’s daughter, Vicky was diagnosed with Crohn’s disease at the age of 12—which included 3 major surgeries! Her celiac disease diagnosis didn’t come until the age of 51. By then major damage had been done to her body with the onsets of several health issues:rheumatoid and osteo arthritis, thyroid disease, severe osteoporosis (both hips have been replaced ...one twice) and severe scoliosis. It turns out: three generations of women in the same family all started showing their symptoms in those early teen years.

Kim wrote me and said she was diagnosed at 39 years old when she was hospitalized with stomach pain, vomiting and diarrhea.But she added at the end of her note, “[I] probably should have gotten tested at [age] 11 when I had the same severe cramping that put me in the hospital.” The bright spot in this story is that her eventual celiac diagnosis, led to the quicker diagnosis of her 5-year-old daughter who was just beginning her symptoms of low weight and anemia.

Another contributor said her 14-year-old son was diagnosed with celiac two years ago, but has also had a kidney issue for the last 9 years.But since he has been eating gluten free…his kidneys have also gotten better, last report was the best since before he was brought in at age 5!!  Now I wonder which really came first?”It does make you wonder.

But there are some success stories:

One mom mentioned her son’s quick diagnosis. “[It] started with diarrhea.  Thought it was a stomach bug.” Then it moved to constipation and two weeks later things still weren’t right.Then their doctor put two and two together, “[An] amazing pediatrician said ‘This sounds like Celiac’ and ran the blood tests. Andrew was only ‘sick’ about 1 month before diagnosis,” she said. However looking back on it all, he had a big belly and slow to grow.

Others talked about having celiac disease and not even feeling sick.

  • I only found out about the anemia through a blood test done as part of a complete physical; my general health to that point was excellent, including running marathons,” Danny wrote.
  • “The only reason [my 3-year-old daughter] was diagnosed was her yearly blood draw came back positive so we had the biopsy,” said Monica, a mom of two celiac children.
  • Anna’s dad, Tom, was diagnosed in his 40s after a family-round of blood testing. He is asymptomatic.

The last two points show how important it is to take part in preventative measures, by getting regular blood testing done for first-degree family members. The National Institute of Diabetes, Digestive and Kidney Diseases says, “…because celiac disease is hereditary, family members of a person with the disease may wish to be tested. Four to 12 percent of an affected person’s first-degree relatives will also have the disease.”

The stories of diagnosing celiac disease may leave many of us angry, frustrated, and possibly grateful—all at the same time. The missed diagnoses and misdiagnoses of those who have this disease presents a roller-coaster ride of emotions. I hope this article helps you in knowing many others have gone through it and are likely going through it as we speak.We just need to make sure we’re spreading the word and getting as much awareness out there as possible to help others in similar situations.