The past few months have been a wild journey -- I wasn't feeling well before, but then suddenly in March I started getting unbelievably terrible migraines -- the first one lasted 2 weeks, and then they began to be triggered on top of each other so they were indistinguishable. Part of the 'aura' was that I'd lose all the feeling on my right side and lose motor control of my hand and my foot.. some days it was impossible to hold a pencil or type with my right hand... on top of that - nausea, GI issues, extreme fatigue...
Doctors have gone to two extremes: from 'just stress' to 'MS'. 2 MRI's later, they can't find MS.. and out of desperation I started trying to find something that would help.. I realized that I was eating a ton of greek yogurt right before this started, so I cut out all dairy and it was like someone immediately turned the volume down. The migraines and other symptoms were there, but only about half as bad.. so after a week or so I cut out gluten, and it has been the *only* thing that has kept them under control. Medicine hasn't helped at all. They've run tons of tests and the only thing that's shown up is vitamin B and D deficiencies.
The doctors have been incredibly skeptical so I tried eating bread (spaghetti, a cookie, milk in my coffee...) several times over the past 2 months and each time, I lose all the feeling again within an hour and have a terrible headache for 3 days...
Finally, just so I'd stop asking for it, I think, they ran a ttg IGA test, and it came back definitively negative. Total IGA shows I'm not IGA deficient.
I'm shocked and incredibly discouraged. These are not vague or hard to track symptoms.. I eat gluten and I'm sick in bed for days. I know there are other celiac tests that can be run, but it took a great deal of convincing just to get this doctor to run the one he did. I feel like this was my one shot at 'proving' what's been going on, and now I'm back to square 1 with the doctors.
Of course, the solution is just to stay away from gluten and feel better, but I can't help but want some sort of 'proof' that this is what's going on, especially with the attitude I've encountered from doctors and friends who are convinced that if you aren't celiac you don't have a problem with gluten.
Just incredibly discouraged, and not sure if there's a next step from here?
-Jess
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