Where Are Your Gluten Related Headaches?

[Elisa D]

Hi everyone. I have, yet again, another bad headache this morning. I'm still on gluten while awaiting my biopsy but have recently been diagnosed through blood work. I've had these headaches for a long time and I know that's a common complaint. I get the same kind all of the time and don't know if it's just me or if a gluten headache is similar for most people. Mine feel like a crushing pain in the back of the head and neck but not really in the center or top, well maybe just a radiating discomfort, but nothing like the death grip in the back. Every once in a while I get an aura migraine without pain, but it's nauseating to not have full vision. How are your headaches? Elisa

[Adalaide]

I had the exact same headaches. Always just to the left. I thought that maybe it was tension or something for years. Sort of kind of like a tension headache... only not. It was literally every day that I had at least a very minor headache, most days a moderate headache and sometimes it escalated to a full blown migraine. This didn't clear up off of gluten. I told myself I needed time to heal and to be patient. I was so ready and willing to blame every last health issue on one little thing.

Then one morning I woke up and slowly started losing my vision. I thought I was having a stroke. So did the doctors at the ER. I had a CT and an MRI. After many hours and tests I got sent home with an ocular migraine. Within a week I was in a neurologists office and got a real diagnosis, psuedotumor cerebri. The amino acid tyramine in foods can cause some people to create more fluid in their heads than they can get rid of. I'm one of these people apparently. Treatment is as simple as topamax to get symptoms under control (just a few months) and a tyramine free diet. If I have a flare up I take an imatrex.

Now I didn't tell you this to scare you. Unless it goes untreated well beyond the point of the blurred vision or something similar it really isn't a horrid illness. You watch what you eat, no biggie, we're all familiar with that. I just wanted you to know that it's possible there are other answers out there and if you don't see improvement once you're gluten free you could explore the idea of this or something else even. Its just the way you describe the headaches with the auras and vision disturbances that sound so much like me for so long, I'd hate to see you spend the 6 months I did waiting around for relief when there is none to be had.

[nvsmom]

I didn't realize my migraines were gluten related. I think I had a migraine 1/2 to 2/3 of the time before going gluten-free. They happen behind and above my eye sockets and radiates out from there to my whole head or my jaw. I feel like I want to squeeze my skull because the pain is expanding outwards... if that makes sense. I too would get auras, usually on the tail end of a migraine, and my vision would get jumpy so it was hard to read.

After 3 months gluten-free, I have only had one migraine that was not linked to being glutened. I've had two other migraines due to glutening.

I usually wake up with a headache in the morning too but it is very mild and easy to ignore; hypothyroidism often causes morning headaches so I've assumed that is what causes my headaches.

I hope you find realief soon.

[Elisa D]

I had the exact same headaches. Always just to the left. I thought that maybe it was tension or something for years. Sort of kind of like a tension headache... only not. It was literally every day that I had at least a very minor headache, most days a moderate headache and sometimes it escalated to a full blown migraine. This didn't clear up off of gluten. I told myself I needed time to heal and to be patient. I was so ready and willing to blame every last health issue on one little thing.

Then one morning I woke up and slowly started losing my vision. I thought I was having a stroke. So did the doctors at the ER. I had a CT and an MRI. After many hours and tests I got sent home with an ocular migraine. Within a week I was in a neurologists office and got a real diagnosis, psuedotumor cerebri. The amino acid tyramine in foods can cause some people to create more fluid in their heads than they can get rid of. I'm one of these people apparently. Treatment is as simple as topamax to get symptoms under control (just a few months) and a tyramine free diet. If I have a flare up I take an imatrex.

Now I didn't tell you this to scare you. Unless it goes untreated well beyond the point of the blurred vision or something similar it really isn't a horrid illness. You watch what you eat, no biggie, we're all familiar with that. I just wanted you to know that it's possible there are other answers out there and if you don't see improvement once you're gluten free you could explore the idea of this or something else even. Its just the way you describe the headaches with the auras and vision disturbances that sound so much like me for so long, I'd hate to see you spend the 6 months I did waiting around for relief when there is none to be had.

Wow! Thank you so much for letting me know. I wasn't too worried about it as they don't happen very often but at least now I'll know more about it of they get worse. Even still, this info will help anyone else reading it! Thanks! Elisa

[kittty]

I didn't realize my migraines were gluten related. I think I had a migraine 1/2 to 2/3 of the time before going gluten-free. They happen behind and above my eye sockets and radiates out from there to my whole head or my jaw.

Mine used to start at the left eye socket, and radiated out. There was a lot of sinus pain in between the eyes too. I also had the CT/MRI and they found nothing wrong. I occasionally had auras (the scintillating scotoma kind), but rarely did the aura come with the pain - they were usually completely separate things.

I've only had one migraine since going gluten-free, and that was immediately after being glutened. The migraine showed up before any other symptoms. My eye sight has also been less blurry since going gluten-free, and my night vision has improved.