
LauraH
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My neurological symptoms really came on in the last couple of years before I got diagnosed, and they were what tipped me over the edge to see all the drs it took to GET a diagnosis. I'd had D and intestinal issues for my entire life, but it wasn't until I had an incapacitating number of headaches that were migraine-like but didn't respond to any medication, migraine meds, narcotics, or anything. I had episodes of losing my words and having my thoughts slow down dramatically, and then some episodes of confusion and getting lost in places that I am familiar with. A couple of times I forgot how to drive WHILE I was driving, and wasn't even able to pull over. Thankfully those episodes passed within a minute or two, but after 2 of them I quit driving, and that incapacity, along with the terror of being lost in my own house (I am 47!) and a few times where I had to leave work because I couldn't put together a thought, were what sent me to the neurologist/rheumatologist insisting on answers. After that I went to the GI doc - I was trying to treat the neurological symptoms and arthritis/fibromyalgia before dealing with the D because they were so much more serious, but when I learned that the headaches were probably dehydration I realized I better take care of the D too, and that's when I discovered that it was all the same thing.
ALL of those symptoms have gone nearly entirely away since I changed my diet. I have microscopic colitis too, because of the years of damage to my innards, so my diet is much more restricted than just gluten-free, but the D is manageable, the dehydration is gone, and my innards are getting more resilient to more foods as they heal. In addition, my arthritis/fibromyalgia pain is MUCH better. There are non-gluten foods that trigger a lot of pain, but as long as I stick to safe foods, I'm pretty much fine.
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Hmm. So... no incentive for the restaurant to improve their practices, since you are not coming back.
I would have accepted the card even if I had no intention of using it, because the hope that I would return could be a motive to actually try to fix the problems.
Just saying.
Good point. At that moment I really just needed to get home, and didn't feel like I had time to wait for a gift card. I was wearing light colored shorts... My friends definitely gave the manager and waitress some pieces of their minds too. They have a decent sized gluten-free menu, so they normally take it pretty seriously, and I expect they will in the future. It was probably more of a training-of-that-one-waitress issue than a restaurant issue.
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That's my worst nightmare and why we almost NEVER eat out. I'd have been tempted to stay there and let them SEE what happens when they don't take your gluten free needs seriously... but, for me, it's so severe and explosive (from both ends... sorry for the TMI) that they'd have to scrape me off the floor!
Did you contact the restaurant after the fact and let them know what happened?
Yes, I let them know right away and talked to the manager, who offered me different food (uh, no, I had to leave right then for the same reason you'd want to stay and share it with them ;-) ) and then they offered me a gift card, which I declined because I don't plan to return. I'm doing ok, a few days later - still some stomach pain, joint pain and the squirts, and feeling faint every time I move. I had forgotten that awful faint feeling, it's been so long since I got glutened. Other stuff gives me the other symptoms, but gluten must be the only thing that gives me the faints.
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AAGGHHH!!! I rarely eat out because I also have microscopic colitis, and my diet is ridiculously restricted and the symptoms quick and severe if I eat something wrong, but I was out with some friends - expected to leave to eat at home, but it went long, so I got brave and ordered cheese and gluten-free bread. The restaurant has a good reputation for being careful with their gluten-free foods and other dietary issues.
I should have just eaten the cheese since I know that's always safe, but I was too hungry and lost my good judgment and willpower. Also I haven't had any bread since my diagnosis, so didn't really realize for a bite or two that the bread I had was regular bread. Once I clued in that the bread was too soft, I asked the waitress (had been really clear about the gluten-free bread when I ordered) and she was barely apologetic. OMG.
I left immediately to get home before the symptoms started (got glutened a couple of months ago and had uncontrollable d and awful nausea all night long, followed by a few days of joint pain and brain fog and migraine. I took some gluten-enzyme and have some activated charcoal (pharmacist recommended) for in an hour or so if the symptoms get too bad. I am having pains and cramping...ugh.
Anyway, this is just a vent and warning - you can't trust ANYONE, always ask again before you start eating if you ordered something that isn't obviously gluten-free (like beans), and always carry your own snacks!
SO frustrated that the restaurant obviously decided I was gluten-free to be trendy and didn't really have a health issue.
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You could be developing microscopic colitis, which is inflammation in the large intestine that can be caused by celiac disease. It's possible that the glutening you mention triggered more inflammation that now is being made worse by foods that had been safe for you before - like an already skinned knee will keep being re-injured if you crawl on carpet, but if it wasn't skinned already it wouldn't be a problem. The problem with MC is that a lot of things can cause symptoms, not just the major culprits (grains, dairy, soy, sugar). For me anything raw, fibrous, nuts, and even many cooked veggies make my D worse. I can get it under control for a week or so, but then something will irritate my intestines and it takes a good week of totally safe foods (chicken, well cooked apples, well cooked carrots, broth, bananas, some cheeses) to solidify things back up.
Only a biopsy can diagnose it (ahem, sound familiar?), but maybe read up on it a bit and try cutting back on fibrous veggies and fruits and raw stuff and see if it settles down.
It's funny, when I eat out, the celiac disease is the least of my problems - I can get gluten-free menu items most places, but it's nearly impossible to find stuff that is safe for microscopic colitis :-(
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I find that going to talk to the waiter privately after placing the order, and telling him then that I have Celiac disease but didn't want to make a fuss at the table gives me credibility because I am obviously NOT doing it for attention or to make any sort of point to my friends like a fad dieter might (whether the people at the table know or not is irrelevant). I've always gotten good responses, promises to tell the chef to cook the food in a separate pan or clean the grill (all necessary but not always done) when I do that. That doesn't mean that I've never gotten sick after, but I also have microscopic colitis, so my food issues are deeper and wider than just gluten.
Anyone Suffer From Neurological Symptoms?
in Coping with Celiac Disease
Posted
Oh, MADDI, it's been a year since my diagnosis, and it took about 6 months after doing the total elimination diet (I started at chicken broth) to have enough foods to feel pretty normal and have enough variety that I didn't feel like I might die of a weird deficiency. It took about that amount of time to feel ok physically, and now, after a year, I feel good almost all the days. Weather changes, stress, and the unexpected dose of garlic in my garden spray can make my joints stiff and hurt, but if I get D it only lasts a couple of days now and I bounce back pretty fast.