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sunnydayzahead

So Many Symptoms - Will It Get Better?

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I have been off work now since April as per my doctor's orders and been having many tests. My neurological symptoms would be my biggest complaint and I wonder how many other people share these and when they will get better? I have been gluten free for 1 1/2 years now, but only extremely careful for about eight months now.

I have had an MRI and cat scan (Both clean thank god!) to rule out tumors and MS because cognitive testing that I had showed problems with my memory, inability to focus and multi task and LOL I can't remember what else, but I definitely know my brain does not work the way it used to. My B 12 was very low so now receive B12 shots and my Vit D was also low so am taking those orally along with other vitamins.

I am super careful with gluten-free diet and have done everything I can to eliminate it from my diet, right down to switching pots and pans. I have got CC a couple of times from eating out, but at home all is fine.

I am still exhausted most of the time - sleeping less but still needing to sleep like 12-14 hrs a night usually with a nap in afternoon, have major tingling and numbness in both my hands and arms. In fact my hands go numb when trying to print sometimes or cooking or using the computer. My memory is a bit better, but still have difficulty with word pulling, and lose myself often mid sentence and have no idea what I am saying. Decision making is very difficult if I have to think of more than one thing at a time and I still limit my activity every day to an hour. When I do too much, I break out in a sweat and have chills/goosebumps all at the same time. My lymph nodes cause me severe pain most of the time but even more so when I am doing something more active. I did not drive for three months and am just now starting to take short trips as my doctor suggested staying off the road for a bit due to an accident I had caused by my inability to focus.

Sorry for the lengthy description - but how long being gluten free before these things will go away?

Has anyone had these symptoms never go away?

How can I tell if there is nerve damage - or is there is my MRI was clean?

Helppppppppppp I am frustrated and although I am doing better than when i first took sick leave, there is still such a long way to go..........

Any suggestions about things that have worked for others to improve these symptoms?

Thanks!! ")

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My symptoms were mostly neuro as well, although I did not have the tingling and numbness. Mostly acute lightheadedness, brain fog, memory deteoriation, lethargy, that sort of thing. I started feeling better within the first month or so, and by the six month mark I was bursting with energy and no signs of the neuro symptoms unless I was cc'd. But I will say that my memory isn't as sharp as it once was 10 years ago (like a steel trap), but that could just be that it's about time for brain overload anyway, gluten or no. It's been over a year now and I seem to have the average memory of friends in my age group.

Here's a thought though: I found very early on that I had a couple other things that gave me the EXACT symptoms as gluten: dairy and soy, both of which I continue to avoid today - although I can probably do a dairy challenge at anytime, I just don't want to jinx it. Sounds like you're vigilant, and if not some other cross contamination you haven't uncovered, perhaps there's another culprit lurking in your diet?

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Hi,

I have struggled for years with difficult to diagnose issues as well. I am new to the site. I was sleep deprived for years due to undiagnosed Narcolepsy. Feeling the need to keep sleeping can be from poor sleep. This can lead to immune system issues and confuse the doctors. After starting sleeping meds to consolidate my sleep it took 2 years for the fevers and really bad headaches to calm down among other symptoms. Some of the other symptoms improved sooner. That was years ago. There is no cure, but some things make it worse including getting glutened. Do what you know helps and keep up your research to find other connections. I have had problems with diagnosis, because so much overlaps. I discoverd the tingling in my hands and feet is related to pinched nerves, but also low potassium, that may be from the undiagnosed celiac. I am doing better since getting educated about gluten. Good luck.

-fierce bunny

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