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I feel terrible!


SusD

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SusD Newbie

I just got diagnosed with Celiacs (with blood tests and a biopsy) a month ago. I was pretty asymptomatic - it was through a routine physical that they found out. So basically, I felt fine before the diagnosis. Based on how high my blood tests were and how severe the damage to the villi is, my doctor was shocked that I don't feel terrible. She said I'll probably feel amazing after going gluten free. Well, I've been gluten free since October 3, and instead of feeling amazing, I feel terrible. I've been getting terrible headaches twice a week since this started. I'm not sure if they're full-blown migraines, but they're pretty debilitating. 

I talked to the nurse at the Celiac center I got diagnosed through, and she said headaches are not a typical symptom and that gluten withdrawal is not a thing. She said that eating gluten free versions of other foods could cause it, but I'm not eating those very much. And the few times I did, don't seem to correlate with the occurrence of the headaches.

Has anyone experienced something like this? Did it go away? I can't imagine what else would be causing this, as the only change in my life is going gluten free. It was already a big adjustment to deal with the deprivation of the gluten-free diet when I didn't feel sick initially, but to have the deprivation and feel worse? I'm losing it. 

Any advice would be appreciated!

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bartfull Rising Star

The nurse was wrong. Gluten withdrawal is a VERY real thing. Just like when you quit coffee, you get headaches. Most of us went through it. The headaches for many of us are accompanied by mood swings, ravenous hunger, and an almost light-headed, dizzy, something's-not-right feeling. Some only go through it for a week or two. Some go through it for a month or so. You should start feeling much better, and very soon.

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  • 2 weeks later...
StClair Apprentice

I am seven months out from diagnosis and going completely gluten-free, and let me tell you that gluten withdrawal is very real, and headaches were one of my major symptoms.  You have to hang in there and be religious about your diet and avoiding cross contamination, and you WILL feel better.  I remember being so impatient to feel better and wondering if my symptoms would be permanent.  Thank goodness they weren't.  It took six and a half months to finally see real progress with the gastritis/esophagitis, but even that is calming down now.  Take care, it's going to get better.

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