Question about Celiac or NCGS...

[Suffering_sunny]

I am wondering if anyone with NCGS gets neurological symptoms?

I am also wondering about Celiac; if you test negative - does that mean you definitely are not Celiac?

Last tests I got was when I was off gluten - blood and endoscope. So found nothing...

Took a private finger prick one the other day, awaiting results, after eating gluten for months + the 6 weeks that people are supposed to...

So hoping it can tell me more, as I feel that gluten ruins my body. From gastritis, to guts, throat, and neurological (ended up with B12 and Iron issues because they gave me PPI, H2 and antacids at the same time! For what they said was reflux... but what I feel may be gluten)

This all started with issues with my stomach and gut AGES ago. Later started tingling. Then eventually the throat. And, it's just gone on and on. I'm in a really bad way. Currently also getting b12 therapy (started 4 weeks ago).

Stopped gluten 2 days ago...

For NCGS people - how long did it take for everything to calm down?

And same question to Celiacs?

I felt myself do the toilet more normally the first day, felt a bit shaky, and felt my throat a little less... so thinking that this may be an issue for me...

I do think though that my body has been absolutely battered via my gut... and that recovery will take an extended period of time.

Any information will be greatly appreciated 💛🙏🏼

Thank you,

S

[bookish]

Just a quick response from my own reading and experiences - yes, NCGS (and coeliac) can be neurological - sometimes neuro, sometimes gut, sometimes skin, and can be a mixture, or vary over time. My gluten disorder produced skin symptoms, but I also have neuro and neurologist said that gluten would have been at least partly responsible.

And no, negative coeliac testing is not a definitive for not being coeliac. Testing isn't that good and even biopsy can miss the signs. If coeliac is very advanced and damage significant then it is more likely to be found, but still may be missed. In the earlier stages, it is easier to miss.

I went traditional GF first but found I reacted to the corn and potato and rice starches in the GF stuff so ended up going totally grain free. I did start to notice benefit quite quickly but was doing a lot for myself at the same time. I was absorbing really badly so used free amino acids to help with protein, plus iron, B12, other vits and minerals. And I quit dairy - the lactase that is needed is produced at the tips of the villi which are damaged by the gluten, so some can go back on once villi have healed but many do need to be off at least for a while.

Give it time and be kind to yourself, you will heal. I'm assuming you mean B12 injections by therapy? Make sure your ferritin, folate and other Bs, and potassium are ok, to support those injections. Best wishes