As Sahar is a minor, her story is told by her sister, Misbah
Describe your sister’s life prior to diagnosis.
Before my sister was diagnosed with celiac disease, she had struggled with iron deficiency and being underweight since she was around 12 or 13 years old. She took iron supplements, but her iron levels continued to remain low. At that time, she was not experiencing the severe gastrointestinal symptoms that people commonly associate with celiac disease.
Then, a few months before her diagnosis, things began to change. She started experiencing severe GI symptoms in addition to the problems she had already been dealing with. That was when it became much clearer to our family that something more serious might be going on.
How did your sister find out that she had celiac disease? Did you suspect it beforehand?
We did not initially suspect celiac disease. My sister had struggled with iron deficiency and being underweight for years, but her iron levels were not improving despite taking supplements, and at one point an iron infusion was being considered. A few months before her diagnosis, she also began experiencing severe gastrointestinal symptoms.
Through my science and nutrition courses, I had learned about celiac disease and how it can interfere with the body’s ability to absorb nutrients. This made me question whether there could be an underlying reason her body was not properly absorbing iron and other nutrients.
We brought our concerns to her doctor, and she was referred to a gastroenterologist. Her GI doctor ordered blood work and stool testing and eventually performed an endoscopy with biopsies. The results confirmed that my sister had celiac disease.
How long did it take for your sister to get diagnosed and what (if any) challenges did you face along the way?
Looking back, my sister may have had signs of celiac disease for years. She had been underweight and iron deficient since she was around 12 or 13.
One of the biggest challenges was that her earlier symptoms did not immediately make us think of celiac disease. For years, her iron deficiency was treated with supplements, but her levels continued to remain low. Once she began experiencing severe GI symptoms on top of the persistent iron deficiency and low weight, we knew we needed to look deeper into what was causing everything.
Do you believe anything could have sped up the diagnosis?
I believe greater awareness of the different ways celiac disease can present could have helped my sister receive a diagnosis earlier.
If the possibility of nutrient malabsorption or celiac disease had been explored when her iron levels continued to remain low despite taking supplements, she may have been tested sooner. Her experience showed our family that celiac disease can sometimes cause less obvious signs for years before more severe gastrointestinal symptoms appear.
Describe your experience living with celiac disease:
My sister’s diagnosis has affected our entire family. We had to learn about gluten, cross-contact, reading food labels, eating at restaurants, and making sure foods prepared at home were safe for her.
As her older sister, I also took on the responsibility of helping my parents understand her diagnosis. My parents are immigrants, and celiac disease was completely unfamiliar to them. I remember having to explain what the disease was, why she could no longer eat gluten, and why this was not simply a food preference or something she could occasionally ignore. There was definitely a learning curve for all of us, but over time we have become much more knowledgeable and careful.
What would a cure mean for you and your sister?
A cure would mean so much not only for my sister, but for our whole family. I would love for her to be able to eat without constantly worrying about ingredients or cross-contact and to go to restaurants, family gatherings, school events, and travel without having to plan everything around whether there will be safe food available. Most importantly, it would give me peace of mind knowing that an accidental exposure to gluten would not harm her health. Watching someone you love constantly have to think about whether food is safe makes you realize how much freedom a cure could provide.
Is there anything else you’d like to add to your story?
Being my sister’s older sister throughout this experience has taught me the importance of advocating for the people you love and continuing to ask questions when something does not seem right. Her iron deficiency had been an issue for years, and when supplements were not working, we knew there had to be a reason. Her diagnosis also showed me how important education is, especially for immigrant families who may have never heard of celiac disease. I had to help explain a completely unfamiliar condition to my parents while also learning about it myself and supporting my younger sister through a major lifestyle change. I hope that by sharing her story, other families will realize that celiac disease does not always begin with obvious stomach symptoms. Sometimes something like unexplained iron deficiency or being underweight can be part of a much bigger picture.