MakamaeThe Voices of Celiac Disease

“It is frustrating to live like this, having no one take you seriously about your symptoms.”

A photo of Makamae with her child, who is wearing a skeleton costume.

Describe your life prior to diagnosis:

I dealt with a lot of pain, mostly in my hands and joints. It started after my first pregnancy and it escalated after my second pregnancy. Every time I ate gluten, I’d pay for it the next day. If I tried to work out, even doing something simple like a squat with no weights, I’d end up getting injured.

How did you come to know (or suspect) that you have celiac disease or non-celiac gluten sensitivity?

I was going in for a colonoscopy and asked the doctor to check for celiac disease because I suspected I might have it. He thought that I might, but I had to go to another gastroenterologist for something else later on and the second doctor wasn’t convinced I had celiac disease because my biopsy was inconclusive. He checked my blood work for the “celiac gene” and found that I don’t have the genes. So his official diagnosis was non-celiac gluten sensitivity.

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

From the time I first experienced symptoms, even though I didn’t know gluten was causing it, six years.

Do you believe anything could have sped up your diagnosis? If so, please explain:

Doctors taking non-celiac gluten sensitivity seriously instead of brushing it off as something else.

Describe your experience with living with celiac disease or non-celiac gluten sensitivity:

Most people are accommodating, but I find I’m met with a lot of frustration on my spouse’s part. He doesn’t seem to think that it’s real or that it causes the pain that I say it causes. He is often pressuring me to eat gluten anyway, because many of the places we used to eat don’t accommodate the gluten-free diet.

It’s not an allergy nor is it celiac, so I also find it very frustrating when restaurants will ask questions like, “Is this an allergy or a preference?” It is neither. I don’t want to eat like this, I have to eat like this. It’s not going to kill me, it’s just going to cause pain that usually takes weeks to subside. I’ve also wondered if my PPA/regular anxiety is exacerbated by gluten. My moods overall seem to be better when I am off gluten.

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

It is frustrating to live like this, having no one take you seriously about your symptoms. I feel like the end all be all diagnosis non-celiac gluten sensitivity doesn’t allow me to search for more answers.