CharlieThe Voices of Celiac Disease

“Charlie was extremely fatigued and wasn’t able to get out of bed most days […] they began to hallucinate overnight and became very aggressive and withdrawn, slowly becoming suicidal.”

A painting of a person in a cat mask with black cats coming out of their backpack.

As Charlie is still a minor, their story is told by their mother. Charlie’s pronouns are they/them.

Describe life prior to diagnosis:

Life before going gluten-free was very troubling; I noticed symptoms as young as 18 months old, starting with constantly swollen tonsils and general grumpiness that continued into adolescence. When Charlie turned 8, they got really sick. They were vomiting at night regularly and their temperature would drop as low as 95°F.

We got some blood work done and they were diagnosed with Lyme disease. Charlie took the meds to treat Lyme disease for one month and was put on allergy meds for their still swollen tonsils, but things didn’t get better. We switched doctors because of this, and because we noticed the doctor we were seeing was actually a nurse practitioner—we needed more help.

We started with an allergy clinic, where Charlie got a full spectrum allergy test. They recommended I remove red meat, chocolate and caffeine from their diet. There was a small improvement, but not enough.

After seeing a gastroenterologist, we discovered Charlie was experiencing abdominal migraines and was asked to not eat after 7 pm. This helped with the overnight vomiting, but didn’t help with the temperature drop, fatigue, or general well-being. 

It was very difficult to show a low body temperature in the doctor’s office as Charlie was extremely fatigued and wasn’t able to get out of bed most days. Their sleeping schedule was off, they were very cranky and they were beginning to show symptoms of depression. We took them off the allergy meds, which helped, but they began to hallucinate overnight and became very aggressive and withdrawn, slowly becoming suicidal. We got them to see a mental health specialist, which helped a bit. 

A rheumatologist checked their thyroid levels, blood sugar levels, brain functioning, and more, but all the tests came back normal. We again changed doctors given what little progress was happening. 

During this time we moved twice due to job changes, and then the COVID-19 pandemic began. The lockdown was probably the best thing that could have happened for Charlie, because it allowed us to isolate their symptoms; we could tell what illnesses were picked up from school and what were actually ongoing symptoms. They always seemed to catch viruses more easily than everyone else in the home. 

We decided to see an ears, nose, throat specialist (ENT), as there had been no improvements to the tonsils and Charlie was still symptomatic, sleeping 19 hours a day. The ENT said the tonsils were swollen enough to warrant removing them, but would not until we found out why the temperature was dropping. We eventually changed doctors again, as progress had stagnated and our pediatrician was swamped with COVID-19 patients.

How did you come to know (or suspect) that Charlie has celiac disease?

After seeing many doctors who didn’t have answers, we researched and chose a pediatrician who had the most school, was in our network, and had the best reviews. This doctor did her homework and suggested a gluten-free diet almost immediately after seeing Charlie, and it’s made a massive improvement in Charlie’s health. I feel like I’m getting my kid back; very slowly, but this has made the largest improvement. 

We reintroduced gluten into their diet and all the symptoms of vomiting, temperature drop, fatigue, becoming non-verbal, abdominal and cranial migraines surfaced. We also discovered a new symptom: massive dehydration. We are in the process of getting a second opinion for tonsil removal as it’s still a problem, but now that seems to be the only unmanageable symptom. 

If you were diagnosed, who made the diagnosis?

We made the decision not to go through the process of a full celiac disease diagnosis because it was affecting Charlie’s mental health.

How long did it take to get diagnosed since the first symptoms and what (if any) challenges did you face along the way?

It took about seven years. Charlie struggled with everyday tasks and didn’t feel emotionally supported because they couldn’t express what was going on. 

Some of our toughest days were when people didn’t believe the symptoms. I had a therapist tell us Charlie was faking the temperature drop. We changed therapists. A second doctor didn’t believe me about temperature drops either until I brought the thermometer in and showed them how I take Charlie’s temperature and calculate it. The allergy specialist said they didn’t think it was a disease and never took the time to consider other issues. Sometimes it felt like we were enabling our child, but thankfully we had our own therapists who kept us motivated to find the right help. 

Charlie had a teacher harass them for not understanding how to turn in homework, telling them they’re lazy and not understanding that this was a child who needed help. We reported the teacher and changed schools. Fortunately their new school has been very accommodating with their 504 plan, and Charlie is smart and determined. 

At first it was difficult to afford a gluten-free diet, as our family has been in lower-level poverty, but we have had pay increases due to job changes and with the supplemental child care tax credits and COVID-19 relief we have been able to afford going gluten-free for Charlie. The journey has been long and hard, but luckily we have persevered and found answers and support.

This is a continued journey and I’m grateful to live in a time where there are resources and so many gluten-free options. We make gluten-free meals together, as a family, so for the most part Charlie eats the same meals we do and has a normal life. Charlie’s social life is mostly virtual, but recently we have been able to go camping and be outdoors for a whole day, whereas before they could only be outside for two hours before needing a bed. I found a celiac disease friendly camp that is also LGBTQ+ friendly that Charlie will be attending next year, and hopefully they can make new friends who are like them. 

Do you believe anything could have sped up your diagnosis?

Yes. It would have helped if the first doctors we saw didn’t pushing pills on my kid and considered other solutions. If Charlie’s classmate didn’t bully them because they struggled with self-care. If their second doctor would have looked at their chart and noticed they were losing weight, despite appearing to be gaining weight, and recognized bloating as a symptom rather than suggesting we get Charlie to exercise and lose weight. If the allergy doctor considered my concerns when I said I think my child has an autoimmune disease instead of writing it off as a non-issue. Most doctors didn’t understand that temperature drops are a symptom of malabsorption. If any of that had happened, we could have saved a lot of time, pain, and money. As a parent I’m hoping to raise awareness so another family can find answers faster than we did.

Is there anything else you’d like to add to your story?

Don’t give up. If you are a parent whose kid shows these symptoms, listen to your kid. Don’t write them off as lazy or faking it. They are just kids and they rely on our efforts to become independent. They depend on you fighting for them to get answers when they are not capable of it themselves. Look online at credible resources and use critical thinking. Find a school that supports your child’s needs. Find mental health specialists who are genuinely there to encourage your growth and progress. Vet every doctor and understand they are human too and are capable of making mistakes. Have grace with yourself during the process.