Terrified, please help

[Zebdya]

I’ve felt mildly achy and upset tummy for several months. Suddenly I have diarrhoea and severe muscle aches too. Pins and needles all over. Muscle twitches. Can’t pick up small things like bits of Lego because my hands don’t feel right. It’s giving me panic attacks.

Doctor has tested iron, vit D, etc. Waiting for results, I’m already on supplements as a precaution. No tummy bug or diabetes (tested). Already have coeliac but been on a gluten free diet for years.

Multiple doctors keep saying it’s just anxiety. Nothing serious, my symptoms don’t match various disorders they might have considered. But this is fucking severe. I keep thinking it’s too severe to be caused by anxiety. Please help, I’m terrified and worried I’m dying.

If you are coeliac are you on B12 supplements or injections? Have you recently started the supplements you are taking? Only asking because they may skew the blood test results.
diarrhea and neurologic symptoms strongly suggest vitamin B12 deficiency. Diarrhea from celiac sprue, bacterial overgrowth or pancreatic insufficiency can be seen with vitamin B12 deficiency because these are malabsorptive syndromes

Do you eat a lot of gluten free foods like GF bread?

I've found there's been a lot of cross contamination in the last year to eighteen months, some of it eventually followed up with a product alert, but most of the time, it's just another 'fuck's sake, something else that can't be trusted'.

The big brands (Warburtons, the supermarket own brands) are definitely less trustworthy than a specialist brand in my experience. Trouble is that Schar/Glutafin is so expensive and the former isn't often in stock, so it's a case of whether I feel lucky or not, I wasn't lucky last week and I'm still paying the price now.

My B12 levels are normal (271, and above 191 is considered normal). I have borderline low folate for which I was given pills a few days ago.

I don’t eat lots of specific gf foods, I have been glutened a few times but it was over a months ago (someone served me real cake instead of gf by mistake).

Feeling terrible tonight. Anxiety and upset tummy. Aching and twitching and pins and needles. The doctor said these aren’t worrying symptoms and I probably just need some vitamins but that doesn’t feel true. I want to believe her but I’m terrified.

Has your calcium level been checked? I get pins and needles and severe anxiety when my calcium is low. What about your parathyroid function?

My calcium is 2.3, normal is 2.2 to 2.6. So apparently that’s fine. In Feb my Vit D was down to 24 (normal is 50 to 175) so they gave me pills and by March it was up to 77, they’re testing to see if it’s fallen again. But when it was low I didn’t have these symptoms.

They did thyroid tests in Feb and said all was fine, TSH was 1.43 (normal is 0.3 to 4.5). So they said it’s not a thyroid problem.

I’m scared. In my opinion these are pretty bad symptoms, I’m aching and twitching and burning. But multiple medics have just said “you’re fine, it’s anxiety”.

I have coeliac and also low ALP/sky high B6. My GP believes there is a link, though I don't know how mainstream that idea is, apparently he's researching it. It causes a lot of what you describe. I was convinced I had something dreadful wrong with me.

Anxiety, aching, feeling twitchy and itching are all symptoms I experience from being glutened along with the obvious digestive issues. Burning, I get from Psoriasis flaring at the same time (which you don't have, although it can be common for somebody with one autoimmune disease to actually have two - or more - and Coeliac can present with skin issues as well).

If other people in your home eat gluten, it could be cross contamination, even if you never touch the all-too-frequently untrustworthy 'Gluten Free' products.

Emotional stuff like a feeling of anxiety, dread, doom or outright terror can also be a symptom of inflammation in themselves (a well as feeling low and achy from low vitamin D, for example).

Thank you both. This has calmed me a bit thinking it might just be a coeliac flare and not a serious illness. I was badly glutened six weeks ago by a waitress giving me the wrong plate. Four weeks passed then I got sick two weeks ago. No idea if it’s related.

My family do eat gluten, but it’s been years and I’ve never been sick with aches and pins/needles until recently. I think the anxiety is coming from the scary symptoms.

Feeling awful this morning. Arms and legs are burning and aching. I don’t know whether I’m having neurological symptoms or whether I’m just tired and anxious.

I’ve asked around in coeliac forums and one person told me how they were badly glutened then a fortnight later they developed numbness and burning in their limbs, which was thankfully temporary and went after a few weeks. So now I’m hoping that’s what’s happened to me and it will go away.