Twix

I have a friend who has coeliac disease and without knowing had a bar of twix! What should she expect to feel like if any different? Can some people have things containg gluten once in a while without any symptoms after?

[Penel]

Hi

Everyone reacts differently to accidentally eating gluten. I get a lot of pain plus v and d., although it doesn’t usually last long.

Even if she doesn’t get a reaction (some people are “silent coeliacs”) the gluten will cause damage to her insides. It really is important to check everything for gluten.

[Hidden]

Thanks for your message Penel...yes uve said what I've been thinking. I read once that it takes long for the gluten to get out of your body..what did that mean exactly? Does it mean starting all over again?

[Penel in reply to Hidden]

I’m not sure about how long it may take for gluten to leave the body, the effects do seem to hang around for some people. After many years of being gluten free I’m hoping that my insides are well healed and that the effects of gluten won’t be too damaging. My body seems to get rid of it very quickly!

[Hidden in reply to Penel]

II've only been told in gluten intolerant not long ago so don't know as much as you and most of you as you've probably figured out by now.

I've just always thought one you have started your gluten free diet then that's it...u have gluten again then you'll be starting your diet from the beginning basically. Uve done the damage..I'm probly not making any sense to some of you I know

[WobblyCaroline]

As Penel says it can vary massively. I am gluten interolant with possible coeliac and my glutening proper (I.e. if I ate as much as a twin) symptoms are long and drawn out and complex. Starting with dizziness and drunk feeling, then feeling starving for 24 hours even after eating, then more neuro symptoms being unable to see or coordinate properly, then fever, then D. Takes 3-6 weeks for me to feel better. If I have contamination it is hard to pick up and can lead to long term glutening with only funny gut but then eventually scary stroke like migraines. The last one put me in hospital. So as you can see not everyone is the same in their reaction

[WobblyCaroline in reply to WobblyCaroline]

That was meant to say twix!!

[Frodo in reply to WobblyCaroline]

I have the same similar symptoms as you, plus exhaustion. I don't have the starving sensation though. I haven't come across anyone else who has these same symptoms so good to get confirmation, as when I mention gluten to doctors it isn't taken very seriously.

I was vomiting (with the migraines) almost every day until I stopped eating gluten. Then the vomiting mostly stopped. The migraines continued but a bit more spaced out and not usually quite as extreme.

Unfortunately yesterday I ate some chocolate I thought was safe, then double checked and it said it MIGHT be contaminated with gluten. Woke this morning with migraine.

Every so often I try to eat GF oats and always get a reaction, last time a scary 2 hour zig zag aura. Think I should probably stop dairy but there's less and less I can eat so ...

[WobblyCaroline in reply to Frodo]

Hi Frodo. I think you may well be reacting to either very minute amounts of gluten below 20ppm which is possible, or you are reacting to another storage protein which may be present in all grains. My advise would be to keep off grains. Do you have any ataxia? Any balance issues, or vision (of course apart from the obvious in migraine). I recently saw Prof Marios H, who told me that headaches are all part of the glutening/coeliac and non-coeliac gluten sensitivity picture. Let me know on the balance thing and it may well be worth you asking to be referred to the ataxia unit in Sheffield as I have been.

[Frodo in reply to WobblyCaroline]

Ah, interesting, thank you. I definitely had worsening balance issues before going gluten free (and having B12 injections) so much so that my GP suspected Menieres. I still sometimes slightly lurch sideways but not so much anyone else would notice. Vision-wise I get some blurring and a lot of floaters. Also interesting that a specialist I've seen for something else talked about a doctor in Sheffield who is an expert in the field.

[WobblyCaroline in reply to Frodo]

Hey Frodo... it certainly sounds like you have the symptoms of gluten ataxia. I saw the prof just two weeks ago and had bloods and he is looking at my last MRI. Really he just ensures that no more damage is done. My last big migraine put me in hospital with a suspected stroke... except it was gluten caused. If you can get an appointment with him do get referred. Print out their referral sheet from the gluten ataxia unit and take it to your GP. I also had the lurching and many of my friends thought I was wildly drunk!!

[Hidden in reply to Frodo]

Oh, tell me about it. It gets pretty narrow, the things you can eat and get away with it! Life without chocolate and coffee????

[nooc in reply to Frodo]

Watch out for Glucose syrup which is frequently made from wheat. it may not effect you but it makes me weak and starts my eczema off.

[CATRYNA49 in reply to nooc]

When you say eczema is it eczema or Dermatitis Herpetiformis?

[Hidden in reply to WobblyCaroline]

Hi WobblyCaroline..your reaction to eating gluten is much worse than mine I can see. I'm so surprised it can have such horrible reactions on different people. I in a way feel lucky or I should say I thank God my gluten and lactose intolerant problems are not as bad some people's.

[WobblyCaroline in reply to Hidden]

I think a lot depends on how long you have been gluten free. I have technically been GF for 6 years and my sensitivity grows year on year. How long have you been?

[Hidden in reply to WobblyCaroline]

Mine isn't years mines only months! That's why I'm still struggling with the problem and the food. I'm trying to and have to be patient yes but it isn't easy

[sailor0655]

I was diagnosed as being coeliac in '92 but I am not as sensitive as some. Should I inadvertently eat gluten usually it has very little effect on me. I am glad that I don't suffer as much as some.

[Anj1a in reply to sailor0655]

I'm the same, and was diagnosed 6 years ago by bloods and endoscopy, but sometimes I honestly question my diagnosis! I've never knowingly eaten gluten since my diagnosis, but my low sensitivity had made me a teeny bit complacent re contamination... and my bloods are always 'negative'. I asked the gastro doc at my last checkup if there are levels to sensitivity but he didn't seem to think so. its interesting...

[CRYSTAL11]

Gluten is gluten toxic to a person with coeliac. So no they shouldn’t eat any even a crumb can affect them

[Whin]

Hi SID123...everyone is different. Some coeliacs might just feel unwell, but I've heard some can suffer something akin to anaphylactic shock and can end up in hospital. And NO!!!! lol If you have coeliac it is never safe to eat gluten ever again!! Even if you have limited symptoms you really shouldn't do it, as you will be damaging your insides, and the long term risks are just not worth it. Having said that we do all have lapses...but coeliacs should strive to keep those to a minimum. I ate something about the size of a twix by accident about a year ago ( freezer mix-up) and was violently sick for hours, and I honestly felt like I was going to die. It took me a day or so just to feel normal again, and meanwhile I was weak and wobbly, headaches, shivering and had nausea ( probably due to the extreme dehydration). If I have only a tiny contaminant like a crumb in a toaster it can get further through my system and will cause bloating, pain and diarrhea for a day or so. Fortunately I'm very careful and rarely have 'slip ups' ...the after-effects are way too nasty!!

[Rmichelle]

Hi there I'm celiac and was glutenesed 1 month ago by a digestive biscuit, mix up with a cup of tea, I always know as 2-4 hours later I'm vomiting with stomach cramps and fatigued with achey legs, usually goes by 24 hours depending on how much ice consumed by accident, hey stay away from twix its biscuit!!

[Hidden in reply to Rmichelle]

Thanks Rmimichelle I definitely will be staying away from that!

[Rmichelle in reply to Hidden]

Lol be careful.😁😁