We have had an interesting few months in our household. Our 3-year-old daughter had a fever off and on (mostly on) for almost five months. We have been to her pediatrician several times, have seen six specialists, and treated her with three different antibiotics. She has had a CT scan, chest x-ray, MRI and five blood draws as the doctors have tried to find a cause.
So blogging and house projects have taken a backseat.
Our daughter was finally diagnosed with Celiac Disease last month. We are relieved, especially considering all the others things they were testing for. We can manage Celiac. But this diagnosis didn’t come easily. This was something I had to fight for after I started suspecting Celiac a month prior.
This whole experience has disillusioned me with the medical community. I had three doctors literally throw up their hands and say “I don’t know.” They didn’t point us in the direction of any other specialty, but left us to figure out the next step on our own.
How we DIY’ed my daughter’s healthcare
I have tried to avoid Googling symptoms in the past because the internet will tell you that you have cancer and two weeks to live. But after the visit to the last specialist who had no answers, I decided to search for a holistic approach to healing her “fever of unknown origin”. I simply Googled “fever and diet” and came across one documented case study of a fever being attributed to Celiac. I then started reading forums for parents of children with Celiac and I found so many stories of children who had fevers until they were put on a gluten free diet.
My first thought was “why didn’t they initially test my daughter for Celiac if a fever is a symptom?” But then I found that even the Celiac Disease Foundation doesn’t list a fever as a symptom.
So I did research on other symptoms of Celiac and found that my daughter had exhibited a few. The unfortunate part was that when I had mentioned these other issues in the past, they were repeatedly overlooked. They included:
- My daughter is small for her age. At this point, the doctors project that she will grow to be 5’3 at full height. In many families, that is a perfectly respectable height, but I’m 5’9 and my husband is 6’0. It never made sense that my daughter was coming up so short when we are so tall.
- She has very firm stools and has a lot of constipation.
- I have a gluten sensitivity but not Celiac Disease.
I thought for sure, that armed with my list of symptoms and the documented case study, that I would be able to ask a doctor to test my daughter for Celiac. After all, they had tested her for so many things with far less to go on.
But when I made my request to one of the specialists, I was shut down with a simple “I don’t think it’s Celiac.”
So I went to another specialist we had seen. “I think that’s a waste of time and would put your daughter through undo stress with another blood test.”
So at an appointment with a third doctor who had just finished telling me she could find no reason for my daughter’s fever, I presented my case and made my request for the test.
“It’s not my field.”
I couldn’t believe this. They had no answers and I had found a viable answer for my daughter’s issues but I couldn’t find anyone willing to run the test. I told the third doctor that if I couldn’t get a test done, I was going to put her on a gluten-free diet anyway. She said everyone wants to blame gluten for their issues but gluten-free was not “nutritionally sound” for a child.
Needless to say, I left many doctor offices in tears out of sheer frustration.
I talked to my husband and we decided to go back to the pediatrician to discuss whether a gluten-free diet would be harmful to a 3-year-old. When I called, I was told that the practice had just brought on a new doctor and he was available that day. We took the appointment.
After discussing my daughter’s case, he had some ideas of things he wanted to run blood tests on. I then told him about my research on Celiac Disease and asked that when he ordered the blood work, he include a test for Celiac. He obliged.
A week later we got the call – positive for Celiac.
I have always heard of stories where mom’s “had to fight” for their kid’s health. But I felt that I could trust modern medicine to figure things out. I never would have thought I’d come up with so many obstacles just to have a simple test done.
We have been gluten free for a while and her fever is gone. Our daughter is having a bit of a growth spurt now. We’re assuming because she is able to properly absorb the nutrients.
I share this in hopes that our story encourages other parents who are dealing with unknown illnesses. This blog will also serve as another source documenting that Celiac can indeed cause a fever.
Hopefully life can now get back in order and I can get back to sharing the DIYs that are more fun.