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Neurological Symptoms Help


Chako

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Chako Apprentice

I am looking around and see so much of my middle son here. I had no idea that neurological symptoms could be present as well. My husband and I call him our "perpetual motion boy" as he is constantly moving or twitching some body part. He is NOT ADHD. We went so far as to have him screened by a psychiatrist as we were sick of hearing about him being so and ruled it out right away.

He has a lot of pain issues and has a facial "tic" that comes and goes. He comes across as worried, fretful, and says he is sad when he is in pain (understandable). I was just wondering what the more common signs are as I could not find them easily on site.

Thank you!

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2kids4me Contributor

The clinical signs vary so much, that is why many people go years before being diagnosed.

I can only tell you what I saw change in the week after diagnosis and starting gluten-free diet, and what I found out was related afterwards.

My son - stopped bedwetting, joint pains (previously told were "growing pains") went away, stomach aches stopped, gained weight and started growing again, blood glucose levels stabalized (he is Type 1 diabetic).

My daughter with Aspergers and what was called "ADD primarily innattentive form", migraines, neckaches, stomach aches, come and go mild fevers, fatigue, crying spells,........ ALL the symtoms disappeared!! I had teachers stopping me in the hallway telling me what a miraculous transition they had seen, suddenly this chid who struggled with reading and math rose to the top 5 of her class, she ran to the top of hills instead of asking to sit down, she smiled instead of crying.

It was like I had 2 new kids!!

My son lost weight and looked skinny, my daughter was bloated and puffy looking and gained weight prior to the diagnosis. Neither had diarrhea. To get an idea how bloated - she looked pregnant! (she was 11 at the time), she hated wearing pants cause they "hurt her tummy".

She asked for jeans this past fall and a belt - for all who have had bloating - you know this is a sign of wellness!! : )

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    • plumbago
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      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
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      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
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