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LizM

Headaches Worse On Gluten Free Diet?

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I've been having an ongoing headache since October of 07 (has never gone away). I've seen several doctors, including 3 neurologists, who cannot figure out what is wrong with me. My other symptoms are nausea and fatigue. I've had numerous tests (MRI, CT scan, EEG, bloodwork, etc) with everything always normal, and have been on numerous medications with no relief on any of them. I recently read some things that made me think my headaches could be linked to celiac/gluten intolerance. I had the blood test done for celiac, and it was negative. I decided to give the gluten free diet a try anyway.

I started the gluten free diet on Monday (6/30), and my headaches and fatigue have been worse all week. The headache was a little worse Monday afternoon/night, really bad Tuesday and Wednesday, then a little better from Thursday through today (but still worse than normal). No matter how much sleep I've gotten all week, I'm completely exhausted all the time. I was fatigued before, but not to this extent. Also, I seem to be hungry all the time. I'll eat a meal and be hungry again an hour or so later.

If it helps, this is my normal diet before beginning the gluten free diet, then what I've been eating this week. Before: cheerios and a banana for breakfast, sandwich and wheat thins/chips for lunch, and usually some type of meat and veggies for dinner (like fish and a salad or something)/pasta about 1-2x/week. This week: chex and a banana for breakfast, sandwich (on gluten free bread with gluten free lunchmeat) and gluten free chips for lunch, and dinners about the same as before (with gluten free pasta the one time I had pasta). I have not eaten out all week, except once at a local gluten free deli, to ensure that I'm not getting any contaminants.

I've read a few posts about gluten withdrawal, but shouldn't it be getting better after a week? Any ideas?

Thanks!

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If it helps, this is my normal diet before beginning the gluten free diet, then what I've been eating this week. Before: cheerios and a banana for breakfast, sandwich and wheat thins/chips for lunch, and usually some type of meat and veggies for dinner (like fish and a salad or something)/pasta about 1-2x/week. This week: chex and a banana for breakfast, sandwich (on gluten free bread with gluten free lunchmeat) and gluten free chips for lunch, and dinners about the same as before (with gluten free pasta the one time I had pasta). I have not eaten out all week, except once at a local gluten free deli, to ensure that I'm not getting any contaminants.

I've read a few posts about gluten withdrawal, but shouldn't it be getting better after a week? Any ideas?

Thanks!

as each person is different it might take you longer to see results, although with a 3 year long headache I can certainly imagine you'd like it gone asap!

one observation about your diet, have you considered cutting out all grains for a week or so? You were having quite a bit of gluten/wheat in your diet before and it looks like you replaced most of those with the equivalent gluten free versions.

many of us find, particularly in the beginning, that it's best to eat very simple, proteins, fruit, veggies and avoid the processed foods. If you are indeed celiac/gluten intolerant you could have issues with other foods as well and the easiest way to figure that out is to avoid the processed stuff and keep it clean.

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I had memingitis and had to battle headaches for three years after.

If you want to try my relief tip, here it is. Smartwater (water supplemented with magnesium and patassium) with a sublingual vitamin B12 tablet. Deep breathing (imitate a smoker) remembering what it feels like not to have a headache. Stretch out your neck muscles by dropping your chin down to your chest and moving your head back and forth.

((If you have too much of these vitamins, it could cause you to have "D".))

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I had headaches that the neurologist claimed was an atypical migraine disorder. I also had a B12 deficiency that may have been caused in part by gluten/malabsorption, but was mostly due to 10 years on acid blockers (like Prilosec), which are listed on B12 sites as being a primary cause of B12 deficiency (you NEED acid to properly absorb B12).

I was on the acid blockers in the first place due to severe reflux, which was a gluten reaction (but I didn't yet know about gluten).

The thing about acid blockers is that if you've been on them for several months or longer, then quitting them cold-turkey results in a strong rebound effect, where your reflux is WORSE than before you started the acid blockers. You have to wean off--but the doctors are unaware of this, and it's not even mentioned on the package insert, nor is the potential to develop B12 deficiency.

The same is true for ibuprofen and other headache medications. If you are on it long-term and try to stop taking it, you will very likely get a rebound headache that is worse than the headaches that originally sent you reaching for the iboprofen!

Neck issues also play a huge role in headaches, especially for those who spend too much time at the computer (hmmm, like everyone reading this???).

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I do have a B12 deficiency, and my latest neurologist has put me on a daily sublingual B12. Prior to my headache beginning, I very rarely took any type of pain medicine (or any other type of medication). Since the problem started, I've been on and off different medications, and several times have been off of any meds for a month or more, including any over the counter meds (they don't help anyway). So I don't think I'm having any reaction to medication. As for the neck issues, the neurologist has checked my neck and hasn't seen any problems there either.

I guess eating clean for a while will be the way to go. It will be a little difficult for me due to my work, but I'll figure it out. Thanks again for the advice!

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