Burning tongue... Gluten?

[Kriticat]

I accidentally ate some gluten and within a couple of hours my tongue felt like I'd burnt it on hot food, and the whole tip was bright red. Could this be a reaction to gluten? I never had anything like it before I cut it out (gluten, not my tongue! )

[RedApple Administrator]

Kriticat, Sorry I don't know the answer to your question. But my commenting will bring it back up the newsfeed, so someone else might notice and offer their thoughts.

[TiggerMe]

Are you a celiac? Seems to be linked in

[Kriticat in reply to TiggerMe]

I tested negative earlier this year. I had never noticed any symptoms, but after the test I gave it up for 3 months to see if it made a difference. It didn't seem to help, but it was quite easy, and I rarely have any now. But since then I definitely notice more stiff, achey joints the day after if I do eat (or drink) some...worse than the normal aches and pains, that is. First time I've had the tongue thing though. Seems like I'm more gluten intolerant since cutting it out, I wonder if it is possible to become coeliac?

[TiggerMe in reply to Kriticat]

I think they do say that the coeliac test is unreliable and that to get a proper diagnosis they have to use an endoscope.... it certainly sounds like you have an intolerance as they do say cut things out for 3-6 months but there is always a chance that when you add it back in you will get a stronger reaction and sometimes will not tolerate it at all.

Apparently between the ages of 40-60 is when you are most likely to be diagnosed but then that is probably as issues become more pronounced.... bit like hangovers 😵

[Kriticat in reply to TiggerMe]

Interesting, I'm going to have an endoscopic exam later this year to see about reflux, so will ask them to check that too 🧐

[Sleepman]

I stopped gluten a year before I found I was hypothyroid.I had red tongue issues with gluten. (Geographic) that stopped when I went gluten free. Does not sound as severe as your reaction.

My blood test for gluten did not show I was ceoliac but I am definitely gluten intolerant.

I think I have read different people have different reactons but between the brain fogs from both conditions, I could have dreamt this ... I had to read my notes, to check whether redness was a year or 2 years ago.

Do you get other gluten symtoms? I have fatigue/foginess and loose poohs. Not sure if mouth ulcers do not flare up too.

[Kriticat in reply to Sleepman]

I am starting to suspect I'm quite intolerant, but I'm constantly fogged and fatigued, (more constipated than loose, though) and cutting it out hasn't helped ... when my thyroid hormones were high I felt a lot better, so might not be from the gluten. Maybe I'm more intolerant when my T3 is low... it's all such a puzzle 🙀

[Sleepman]

It is complex. How ling have you been gluten free. It takes more than 3 months to heal. Then your bodies been damaged/affected by low thyroid.I am pretty good for the last 6 months.

Have you had b12 and vit D bloods done? They have many if same effects. Uuughh. The wise ATeam on here will help.

Good luck.

[Sleepman]

Read the other posts.

I have to completely gluten free, there are no cheat days. My mum is the same and she is also hypothyroid. I did some gluten trials some months back to see if I could take gluten after getting thyroid hormones under control.

My inexpert view - thyroid destroying antibodies flare up as they attack the stuff gluten breaks down to ( as well as what is left of your thyroid glands) Presuming you are autoimmune under active )

I think this may be related to the aches and pains, they attack other parts of the body too. It is not just the inside of your stomach that is damaged/inflamed. My thyroid notes from last year do not mention aching joints. My gluten free notes from before then do, and I remember having to stretch every day carefully for some time

It take some time for these antibodies to go away. It is slow...

Some poor souls suffer from gluten ataxia where this affects the nervous tissue in the brain as well as other parts of the body.

I remember advice from them that it takes months for effects to go away after having gluten and being concerned at my gluten trials.

I think

[Kriticat in reply to Sleepman]

That sounds plausible, I know everything is related. I cut gluten right down when I was diagnosed, Dec 21, but then this year I had to go back on it for 6 weeks to do coeliac test, didn't notice any difference then, but I don't eat a huge amount anyway. Then I did 3 months totally gluten free, until May, when I went back to England and I really noticed the joint pain and stiffness after beer, Yorkshire pudding, fish n chips and pizza! So been pretty much free again since the beginning of June, with the very occasional bit of flour on fried fish (local speciality, and I don't notice anything after that). But last weekend I ate half a piece of birthday cake, and that's when the tongue thing happened. Fine now, only lasted less than 24 hours, but I'm not going to risk it again! BTW, yes, I'm autoimmune hypo, with Graves antibodies too... my b12 and D are low in range, and my zinc even more so, so working on that.

Thanks for your input, it helps to clear up some of the mysteries! What a learning curve 🤔

[Sleepman]

It was useful for me looking back, 90% sure my aches and joints are gluten related.

I hope you have some good spells where you feel well and vital.

Decent fried fish is a passion for me too, preferably cooked in dripping.

My gluten "trials" this spring was fried fish and that seemed ok. 2 days later I had a bacon butty and that had me running for the loo.

A month or so later I had some draft beer and it was no good for me. Back to gf IPA in tin now and wine/ciders.