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I Need Support, Please!

horsegirl

By horsegirl
in Coping with Celiac Disease

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horsegirl Enthusiast
horsegirl
Posted

After happily being gluten free for 5 months, I've now been back on the stuff for 6 weeks in order to get a definitive diagnosis of celiac or gluten intolerance. I go for an EDG/biopsy Friday 8/10.

My neuro symptoms/fibromyalgia are so bad tonight I can barely tolerate them at all.

I ate a donut today (with gluten, since I'm eating it right now), & tonight I can barely move my arms

because they're so heavy feeling, & I'm in serious pain from head to toe. I have a bad headache, feel very depressed, & wonder if eating it is worth it to get a diagnosis in the first place. But, I figure I've come this far, and only have 2 more days to go until the biopsy, & then I'm stopping gluten

for good. My Prometheus blood work came back negative (but I was back on gluten only 2 weeks when I had it done), and my Enterolab tests are still pending.

Anyway, thanks to all for "listening". I needed to vent, & want to know I'm not alone with the neuro symptoms.

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Guest Doll
Guest Doll
Posted

I hear you! I also have neuro symptoms when glutened, and I know *exactly* what the "heavy arms and legs paralysis" feeling is like. It's scary as H*%$! I also have trouble walking. It's really scary when you're out in public. There's been times where I was terrified and didn't know if I'd make it home.

Thank God I did! :D

Do you also get "disorientated" and feel like you're going to pass out?

I know how scary it is, so just try to work through it as best as you can. You'll be able to be gluten-free again soon, so hopefully you have someone you can lean on until this passes.

Know that you are not alone and that this will pass.

PM me if you need to talk.

horsegirl Enthusiast
horsegirl
Posted
  • Author

Hi Doll,

Thanks so much for writing & for the support...it means a lot right now to hear from someone who can relate. That heaviness in the arms & legs is very scary, & yesterday I honestly wondered if I was having a stroke or something, but it just stayed the same & didn't get any worse. I haven't felt really disoriented, but the brain fog is intense, & I have passed out once in the past, & nearly passed out about 3 weeks ago (was driving & had to pull over to rest; finally threw up on the side of the road - gross! Made it home in 1 piece, but had my 3 year old in the backseat, so that was scary).

I can't believe you're doing your whole wedding reception gluten-free! That's so awesome! Looks like a lot of work, but good for you for doing it. Just don't work so hard you forget to have fun!

Thanks again,

M

blueeyedmanda Community Regular
blueeyedmanda
Posted

I have never experienced this but I just wanted to see how you are doing. Hope things are well.

dancer4jc Newbie
dancer4jc
Posted

Im soo sorry u have to deal with this. Before becoming gluten-free, my mom lost all the reflexes in her legs, and waas choking on food b/c she couldnt swallow. She dropped everything and she was terrified of falling. Her GI dr took her off of gluten, and within a week there was improvment. NOw, a year later, she has recovered almost completely!

HAng in there!

horsegirl Enthusiast
horsegirl
Posted
  • Author

Wow - that's weird you should say that about your mom choking, because last night while eating dinner I choked a couple of times, but just figured I wasn't being careful or was tired or something.

Maybe it's related to the other neuro stuff I have. I know these feelings will all pass once I'm off gluten again after my biopsy Friday, but right now it's sure scary! I felt so good when I first went off gluten last January to try to heal my fibromyalgia symptoms. When I was told by my GI to go back on gluten for all these tests, it's like knowing I'm poisoning myself every day. Weird, huh?

Thanks again for all the support; I definitely need it right now.

ravenwoodglass Mentor
ravenwoodglass
Posted
Wow - that's weird you should say that about your mom choking, because last night while eating dinner I choked a couple of times, but just figured I wasn't being careful or was tired or something.

Maybe it's related to the other neuro stuff I have. I know these feelings will all pass once I'm off gluten again after my biopsy Friday, but right now it's sure scary! I felt so good when I first went off gluten last January to try to heal my fibromyalgia symptoms. When I was told by my GI to go back on gluten for all these tests, it's like knowing I'm poisoning myself every day. Weird, huh?

Thanks again for all the support; I definitely need it right now.

Have you told your GI what is going on? If not you should. There is a risk of neuro damage going past the point of being able to recover gluten-free. I am not trying to scare you just to make you aware. If you have not contacted your doctor do so today. He may diagnose you based on your response to adding gluten back in, he should, but being a GI doctor he will most likely want to get those last few dollars from you.

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horsegirl Enthusiast
horsegirl
Posted
  • Author

How long does it take for the neuro damage to be permanent? I'm having the biopsy the day after

tomorrow, & then plan on going gluten-free immediately afterwards. I've never met the GI, only had a phone consultation with him, & will meet him Friday morning in the GI lab for the EGD/biopsy.

That's apparently how my medical group works (the GI doc doesn't usually do a consult ahead of time, just at the time of the biopsy). I did tell him on the phone that regardless of the biopsy results, I am planning on going gluten free because I had such a positive dietary response in the past.

Guest Doll
Guest Doll
Posted
How long does it take for the neuro damage to be permanent? I'm having the biopsy the day after

tomorrow, & then plan on going gluten-free immediately afterwards. I've never met the GI, only had a phone consultation with him, & will meet him Friday morning in the GI lab for the EGD/biopsy.

That's apparently how my medical group works (the GI doc doesn't usually do a consult ahead of time, just at the time of the biopsy). I did tell him on the phone that regardless of the biopsy results, I am planning on going gluten free because I had such a positive dietary response in the past.

I wouldn't worry too much right now. I had severe neuro symptoms for almost 2 years (give or take) and they *completely* went away as long as I'm gluten-free. In fact, I even had an MRI to screen for MS lesions. I was terrified, since I am fully aware of how disabling MS can be.

One of the posts above remind me...I ALSO dropped things all of the time. I'd also trip over my own 2 feet. :P It was SO embarrassing, since I have always been seen as a pretty co-ordinated person. I had asked for a B12 test from my specialist, and surprisingly, it was normal. At that point, I was terrified, and thought I had MS and that my life was over as I knew it. I knew *something* was wrong, and at that point, I NEVER would have suspected Celiac. I didn't get the gastro symptoms until much later.

Of course, everyone is different, but I would think that most cases of "irreversible" nerve damage from untreated Celiac results from poor absorption of vitamin B12. A long-term B12 deficiency can unfortunately cause perm. damage in some cases. Usually though, this occurs after a fairly long period of time.

I just don't want you to worry!

That said, sometimes my dizziness and "passing out" feeling is linked into low blood pressure. My blood pressure and blood sugar usually drop when I'm glutened. Usually only the low blood sugar sticks around for a couple of days, though. If you are having severely low blood pressure, this actually CAN be dangerous, so make sure your doctor is aware of your symptoms. I agree with Ravenwoodglass that he needs to be informed.

Let us know how you are doing and make sure you check in!

P.S. I find that when I have been CC'd and have neuro symptoms (they are usually really intesnse for a day or two, then go away), I just try to work through it by reassuring myself. I actually tell myself that I will be OK, and that this will pass. Little things like keeping the phone beside your bed in case you need to call someone can also be comforting. Having someone call to check in on you also helps when you're alone and scared. I am lucky that my fiance is really good for this. That's why I keep him around...hehe... ;) A neighbor, co-worker, parents, friends, anyone that can at least call you on the phone.

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