Almost hoping I HAVE Celiac Disease at this point
Hi all,
Thought it was high time for an update and since I posted one to my LJ the other night I'm copy and pasting part of it here, with some more info I found that I thought MIGHT be helpful to some here.
HAVE YOU BEEN TESTED FOR CELIAC DISEASE? So many of my symptoms are the same as those with gluten intollerance. But I'm getting ahead of myself here.
The puppy woke me up last night...well this morning at 12:30AM and of course then she went happily back to sleep asleep somewhere and I couldn't get back to sleep. PLUS my ears were ringing in a VERY irritating way all morning. It's a bit less now. I had hoped to stay up all day so I could hopefully sleep tonight, but 11AM I crashed and could no longer keep my eyes open so rather than gasping for breath on the couch (I have Sleep Apnea) I went to bed and slept 11AM to 5PM. While I was asleep the dr called to schedule my MRI and inner ear test. I had wanted to ask them to also fax my lab the celiac blood test orders so when I go in on Wed they can test for celiac disease as well.
Just got the new meds. The meds that made me feel like I had the flu didn't help the migraines at all. I thought they were at first because I was having a good day, but I kept a daily record at the request of my neurologist, and then plotted the migraines on a chart so that she could better understand what my migraines look like. The chart made it very clear that the meds didn't help AT ALL. Bummer. So new meds it is.
Then I came home and took the emergency migraine med she gave me, and it knocked my migraine down from an 8 to a 3. BIG difference! I felt a lot better. When it wore off, I took another one 6 hours later as suggested and it went down from a 4 to a 1. Unfortunately it has caffeine in it which makes my muscles hurt and my brain alert, so I didn't sleep at all the last 2 nights.
So now I'm titrating off of the Effexor. I'm taking one every other day this week as recommended and then one every 2 days at the start of next week till they're gone.
I start the new daily maintenance medicine at 1/2 the small dose daily for a week, then a full dose after that. titrating up until hopefully it works. Plus there's another migraine emergency medicine i can only take up to 3 times a week, but I can't take that until I get off of the Effexor. And last but not least, a run of Prednisone to try (again) to knock the migraines out. At the time the neuro asked, I thought I hadn't tried prednisone, but when I got home Carlie corrected me. I'm trying it anyway... I'm in a different place now than I was last time, maybe this time it will help. And I'm more aware of what I'm eating, so hopefully I won't gain anything but water weight (which I can already see/feel all over me it HURTS)
After I try these new meds if they don't get rid of the migraine the only option left is injectable migraine meds, and if that doesn't work, narcotic pain meds. Narcotics, in the past, were said to have made my migraines worse, so we're not wanting to go that route. Plus my grandmother was an alchoholic so I'm big on NOT becoming an addict.
My neurologist has signed me up for an MRI, blood tests for valley fever and some other things, and an inner ear test because of the constant dizziness on changing position (lay down, roll over, or sit up and the room spins) Next week I'll call the neurologist to schedule my appointment for next month since she doesn't want to go 2 months between visits this time. (this medicine works faster apparently)
Since then I came home and watched the documentary about Gerson's Miracle which Dr Gerson created to deal with his migraines and then discovered helped other things as well. It's basically a vegitarian diet with an emphasis on a detox protocol, and some supplements. We ordered the book, and are going to try it, but not until AFTER I get my celiac blood tests done, because I was warned not to change my diet until then, as it could results in false negatives if I'm eating vegetarian. Basically don't fix yourself before we know what's broken. LOL
If you haven't been tested for celiac disease, check out this checklist and if you also find you have many of the symptoms and may have celiac disease, PLEASE PLEASE ask your doctor for a test, because I know people who have gluten intolerance, and it's such a simpler dietary change than something as drastic as Gerson's Therapy or some of the other things we try.
At this point I'm almost HOPING to have celiac disease because a gluten free dietary change would be much simpler than Gerson's Therapy and much more something I'd be willing and ABLE to do for the rest of my life. I know I can live happily gluten free and if it fixes even a fraction of my symptoms it would be life changing. I'm really hoping it will decrease the fatigue, joint pain, gas/bloating, ibs, brain fog, occasional mouth sores, and migraines. But if it just fixes the ibs and migraines I'd be eternally grateful too. If it turns out I never had fibro...or that celiac was the underlying cause for the whole thing tho... I'm going to be PISSED! Because over 19 years of pain, fatigue, and life debilitating symptoms could have been resolved with a simple test and dietary fix. If that's true, I'll be pissed but grateful to have finally found it, and you can bet I'll be a massive advocate for people with gluten intolerance. (which apparently runs in the family and my cousin has it...makes me wonder if my mom's mild fibro is actually gluten intolerance as well)
If I do turn out to have this I'll let you all know and I'll suggest the rest of my family members get tested. Plus my cousin has some really yummy recipes she's created and is thinking of selling, so I'll have the major benefit of some free delicious gluten free recipes that aren't out there in the world yet. Who knows, maybe if I finally feel better I can go back to work and help her start her new business!
Thought it was high time for an update and since I posted one to my LJ the other night I'm copy and pasting part of it here, with some more info I found that I thought MIGHT be helpful to some here.
HAVE YOU BEEN TESTED FOR CELIAC DISEASE? So many of my symptoms are the same as those with gluten intollerance. But I'm getting ahead of myself here.
The puppy woke me up last night...well this morning at 12:30AM and of course then she went happily back to sleep asleep somewhere and I couldn't get back to sleep. PLUS my ears were ringing in a VERY irritating way all morning. It's a bit less now. I had hoped to stay up all day so I could hopefully sleep tonight, but 11AM I crashed and could no longer keep my eyes open so rather than gasping for breath on the couch (I have Sleep Apnea) I went to bed and slept 11AM to 5PM. While I was asleep the dr called to schedule my MRI and inner ear test. I had wanted to ask them to also fax my lab the celiac blood test orders so when I go in on Wed they can test for celiac disease as well.
Just got the new meds. The meds that made me feel like I had the flu didn't help the migraines at all. I thought they were at first because I was having a good day, but I kept a daily record at the request of my neurologist, and then plotted the migraines on a chart so that she could better understand what my migraines look like. The chart made it very clear that the meds didn't help AT ALL. Bummer. So new meds it is.
Then I came home and took the emergency migraine med she gave me, and it knocked my migraine down from an 8 to a 3. BIG difference! I felt a lot better. When it wore off, I took another one 6 hours later as suggested and it went down from a 4 to a 1. Unfortunately it has caffeine in it which makes my muscles hurt and my brain alert, so I didn't sleep at all the last 2 nights.
So now I'm titrating off of the Effexor. I'm taking one every other day this week as recommended and then one every 2 days at the start of next week till they're gone.
I start the new daily maintenance medicine at 1/2 the small dose daily for a week, then a full dose after that. titrating up until hopefully it works. Plus there's another migraine emergency medicine i can only take up to 3 times a week, but I can't take that until I get off of the Effexor. And last but not least, a run of Prednisone to try (again) to knock the migraines out. At the time the neuro asked, I thought I hadn't tried prednisone, but when I got home Carlie corrected me. I'm trying it anyway... I'm in a different place now than I was last time, maybe this time it will help. And I'm more aware of what I'm eating, so hopefully I won't gain anything but water weight (which I can already see/feel all over me it HURTS)
After I try these new meds if they don't get rid of the migraine the only option left is injectable migraine meds, and if that doesn't work, narcotic pain meds. Narcotics, in the past, were said to have made my migraines worse, so we're not wanting to go that route. Plus my grandmother was an alchoholic so I'm big on NOT becoming an addict.
My neurologist has signed me up for an MRI, blood tests for valley fever and some other things, and an inner ear test because of the constant dizziness on changing position (lay down, roll over, or sit up and the room spins) Next week I'll call the neurologist to schedule my appointment for next month since she doesn't want to go 2 months between visits this time. (this medicine works faster apparently)
Since then I came home and watched the documentary about Gerson's Miracle which Dr Gerson created to deal with his migraines and then discovered helped other things as well. It's basically a vegitarian diet with an emphasis on a detox protocol, and some supplements. We ordered the book, and are going to try it, but not until AFTER I get my celiac blood tests done, because I was warned not to change my diet until then, as it could results in false negatives if I'm eating vegetarian. Basically don't fix yourself before we know what's broken. LOL
If you haven't been tested for celiac disease, check out this checklist and if you also find you have many of the symptoms and may have celiac disease, PLEASE PLEASE ask your doctor for a test, because I know people who have gluten intolerance, and it's such a simpler dietary change than something as drastic as Gerson's Therapy or some of the other things we try.
At this point I'm almost HOPING to have celiac disease because a gluten free dietary change would be much simpler than Gerson's Therapy and much more something I'd be willing and ABLE to do for the rest of my life. I know I can live happily gluten free and if it fixes even a fraction of my symptoms it would be life changing. I'm really hoping it will decrease the fatigue, joint pain, gas/bloating, ibs, brain fog, occasional mouth sores, and migraines. But if it just fixes the ibs and migraines I'd be eternally grateful too. If it turns out I never had fibro...or that celiac was the underlying cause for the whole thing tho... I'm going to be PISSED! Because over 19 years of pain, fatigue, and life debilitating symptoms could have been resolved with a simple test and dietary fix. If that's true, I'll be pissed but grateful to have finally found it, and you can bet I'll be a massive advocate for people with gluten intolerance. (which apparently runs in the family and my cousin has it...makes me wonder if my mom's mild fibro is actually gluten intolerance as well)
If I do turn out to have this I'll let you all know and I'll suggest the rest of my family members get tested. Plus my cousin has some really yummy recipes she's created and is thinking of selling, so I'll have the major benefit of some free delicious gluten free recipes that aren't out there in the world yet. Who knows, maybe if I finally feel better I can go back to work and help her start her new business!