Lots of tests

[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. 

[Suzi374]

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. 

[trents]

Was a biopsy done when you had your gastroscopy?

Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.

[plumbago]

I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should!

Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know).

Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate.

Three, where was the CT angiogram (of what)?

I could go on and on, but thought I'd start there.

[Suzi374]

All the blood tests are being done now re: deficiencies so waiting for those results. I feel I have had B12 done in the past and think it was normal. I will get blood results on Tuesday hopefully. CT angiogram of heart as they wanted to rule out that the chest pain from ?reflux was that and not heart related. It began with a stress test which showed something little that they needed to explore. Results were NAD. 

I had colonoscopy and gastroscopy and I know he took biopsy of stomach but from what you are saying it was probably not sufficient and at that time celiac wasn’t on the table. I thought you would ‘see’ celiac on the colonoscopy or hints of it that would determine the need for a biopsy. I had blood tests about five years ago I think for celiacs. Sorry I’m a bit vague but this hasn’t been a thought before the neurologist started to query gluten and looking at the tests, it looks like he’s looking at inflammatory responses, malabsorption and autoimmune 

[plumbago]

Ok, so in your first post, you say you've gone off gluten. But in your most recent post, you say you are awaiting blood test results. If the blood was drawn after you stopped eating gluten, it will not be possible to get a good sense of if you have celiac disease or not. You need to be eating gluten for a certain amount of time before you get blood tests. Colonoscopy is not used to look for evidence of the villous atrophy of celiac disease; endoscopy plus biopsy is.

Personally, I like working with neurologists, among the last of the specialists that actually touch a patient. He/she was smart to point you in this direction.

Your ejection fraction and all that are good, I'm assuming? (Not sure if you ever did an echo or not) No HF?

[Suzi374]

Heart all fine.  Heart was never an issue but they don’t have answers and were ruling things out.  I spoke to neurologist, had blood taken and went off gluten. Not on neurologists advice, rather just because I thought I may as well as I looked up Hashimoto and gluten and realised that the two together aren’t ideal. The neurologist was amazing really. I’m a bit wary because I have so many stupid, vague but very uncomfortable symptoms, I feel like I’m whinging and have given up looking for answers. I nearly cancelled neurologist, however partner said go just to see. I only went because of sensory changes in feet - numbness and tingling. I thought he would be interested in my brain or whether prolapsed disc was causing it. But blood tests look like he’s looking for cancers or autoimmune issues (further to my Hashimotos). 

[Suzi374]

The gastroenterologist did biopsy during gastroscopy. That should have indicated celiac if it was evident. 

[trents]

10 minutes ago, Suzi374 said:

The gastroenterologist did biopsy during gastroscopy. That should have indicated celiac if it was evident. 

But you said he biopsied the stomach and not the duodenum/small bowel which is the part that needs to be biopsied when checking for celiac disease.

[Suzi374]

Ah ok Trent’s.  Thanks for the clarification. I’m unsure as to whether other biopsies were performed so that’s a good point you make. I would almost like it to be celiac disease because it would answer so many questions about vague and uncomfortable symptoms. I’ve even noticed the weird buzzing in my head has gone.