When I was 12 years old, I got my first migraine. I had just gotten my first period, and along with the cramps and general ickiness of that, I was nauseous, my neck was killing me, and my head felt like an ice pick had been driven into my skull.

This is normal

That’s all the women in my life told me. That they had the same thing, every once in a while on their period. But not me. I got migraines on my period, on random Wednesday’s, after seeing movies with friends, after walking the dog, in class, in bed…in short, every where, any time, with no warning. That isn’t normal. So 12 year old me was packed up in the car and taken to a doctor.

This is normal

That’s all the doctor told me. I was told to take acetaminophen and ibuprofen, put an ice pack on my head, and deal. So I did. Two years passed of near constant migraines; I changed my behaviour, hoping it would help. I stopped going to movies, I stopped hanging out with friends if there was even a chance I’d get a migraine. Somewhere in this time, not only was my period a major migraine trigger, but it was heavy enough that I would pass out and need more pads than any woman should ever need. At 13ish, I was put on birth control. It took 12 years to get off of it. Eventually, the dizziness and fainting got so bad even outside of my period that finally, after months of begging, I was sent for a blood test where they discovered my iron levels were so low, they were literally undetectable. So now, armed with birth control, pain meds, and iron supplements, I was ready to start high school. Except none of those things were helping. The migraines got worse and worse, the iron supplements hurt my stomach and didn’t help raise my iron levels, and the birth control was not only unnecessary (raging lesbian here) but were likely causing more migraines! My first year of high school, I missed so many classes that I was told at the end of the year that if I had missed one more class, I would not have passed. I had a headache everyday at the end of school, so I would leave before my last class ended. My iron levels were so low that I could barely participate in gym class, and had to nap for hours a day just to feel a bit of energy. At the end of grade 9, after once again begging for months, my doctor sent me to a neurologist.

This is normal…but if you think you have a brain tumour, let me know

That is a genuine quote from my neurologist. And since I didn’t think I had a brain tumour (and he scared me to death with that sentence), I instead sought out other doctors who could help. From the age of 14 to 19, I saw chiropractors, physiotherapists, acupuncturists, nutritionists, naturopaths, hematologists, and more. I had Botox injections, took every type of medication under the sun, from triptans to anti-seizure meds to antidepressants to painkillers, and nothing worked for more than 3 months. That was the limit on every med and every treatment. Nothing really made my migraines go away completely, but they helped a little.

When I went to university, things got a little better. I got a new doctor who was willing to offer new treatments, I was happier, and I had a room with blackout blinds. All a girl could need. I was still getting migraines weekly, but somehow they seemed more tolerable. That was until the summer arrived, and with it, some of the most stressful times of my life. I had gotten a fun summer job, was living at home again, and generally relaxing for the summer. But as the summer arrived, humidity, thunderstorms, and some family issues would elevate my migraines to some of the worst I’d ever had. Trips to the ER offered no relief as I was told to just take more ibuprofen, the chiropractor was visited daily, and I had to quit my job because I missed weeks on end.

The migraines lessened as the summer ended, but my iron deficiency had made everything worse. I was dizzy, tired, and irritable. So, after years of supplements that hurt my stomach and did nothing for my iron levels, I asked for an infusion and instead, I got injections. 10 of them, in my glutes. It was awful, and they left stains on my butt, but my iron levels were finally detectable. When I went back to school, I needed a doctor to sign off on the injections to get them from the school nurse. Now, at my school, you don’t see the same doctor every time so I was sent to see a new doctor who asked a question that somehow, in 12 years of dizziness and supplements, no doctor had ever asked.

Why

It seems like a silly question, but it would change my life. This was the first time a doctor had gone past the explanation of “woman with low iron”. Why did I have low iron? I took supplements, I ate red meat, and I didn’t bleed a lot on my period because of the birth control. So how did my iron never get better unless it was injected directly into my muscles. There were a few potential reasons that we quickly ruled out through tests or family history, and then the doctor said “I have one last thing to check for, but it will almost definitely come back negative since you have none of the symptoms, but we should try anyway”. The test was $100 bucks out of pocket, and until recently, I don’t think I would have gotten that test done if I wasn’t so desperate for an answer.

A week after the test, my doctor called and asked me to come in. They would never discuss results over the phone, so it didn’t seem like anything important to me, just another negative test and no answers. But when I got there, and my doctor opened the results to read, she literally laughed out loud. I was the first person she had ever sent for the test, with no symptoms, and yet I somehow had the highest levels she’d ever seen. I’d need a biopsy to confirm, she warned, but she was 100% sure I has Celiac disease. Now this might be obvious to you due to my account name, but at the time I was floored. Allergic to gluten? I’m an Italian Jew, all we do is eat gluten. My stomach never hurt, I never had digestive issues, and yet my body was destroying itself every time I had so much as a crumb.

I got the biopsy and an official diagnosis, I stopped eating gluten, and slowly but surely, my migraines went away. Not entirely, I still have a migraine on my period, and if the weather gets really crazy, but once a month is better than always. But now I get to see movies with friends, and go to fireworks shows, and go on long walks, and dance in night clubs. I’m making this post to help others like me, who have searched and pleaded with doctors to do something and gotten no where. I want to make it so clear right now that I did everything I could. I advocated for myself, I asked questions, I tried every treatment offered to me, and got no where until some random doctor asked a question no one had tried to answer, and just happened to know that migraines and iron deficiency could be symptoms of Celiac disease.

I’m making this post, and this account, to tell people that they should ask to get tested, even if there’s no family history or stomach troubles. The asymptomatic version makes it hard to diagnose, but my life got so much better when I found out. I’m not cured. I still have low iron and migraines, but it’s better. I’m happier.

The rest of this blog is going to be actually good recipes, GF alternatives, and some need-to-knows about being gluten free. But I hope my story will get out there and help at least one person suffering (My grandma tells everyone she’s ever met who’s had a headache to get tested, and she’s already helped 3 people so I think my chances are pretty good.)

Thanks for sticking around to read this. I appreciate it.