More Questions On Glutening Symptoms

[KCG91]

I've been gluten free for seven months. I didn't have severe or particularly noticeable symptoms before diagnosis so I wasn't sure how I'd know if I got glutened. On Saturday I went for a meal with friends and three hours later (lasting for four hours) I was literally unable to get out of bed with the pain and nausea from an incredibly stiff and sore neck, giving me a headache and back pain, worst when I moved my head. My arms and shoulders shook/shuddered when I moved them (from my forearms to my shoulders - feels as though I've done a good weights session). Also very cold and shivery. Bit of tummy trouble but nothing too serious, apart from retching which I never do. It lasted four hours with a 'beaten up' feeling for the next day.

 

I know everyone's reaction varies but does this sound familiar to anyone? It's only happened once before (in February) and as I'd been at a party the night before I put it down to a delayed hangover but again it started at 6pm having been fine during the day. 

Mods - sorry if this is in the wrong section!

[RiceGuy]

Some of the symptoms sound familiar to me, but as you noted, we're all different. There may very well be other things you'll react to besides gluten, especially now that you're body has has some time to recover.

 

Incidentally, some of the things you've stated have me wondering if you might have consumed any alcohol. For anyone who might be unsure, many types of alcohol do contain gluten. But also I've found that even a tiny amount of grain-free alcohol makes my system react badly. That includes vanilla extract and the like. I've read that alcohol in general isn't particularly well-tolerated by those with Celiac, especially while still healing.

 

Having a meal at a gluten-eating friends house is just asking for trouble IMHO. Even if the food you eat isn't supposed to contain gluten, there are just too many opportunities for cross-contamination to be safe.

[NatureChick]

I was just talking to my sister yesterday about how different our reactions are to gluten, hardly any overlap in our symptoms lists, but neck pain turned up for both of us.

My reactions aren't that immediate or strong, but the only time I accidentally had a full-on glutening, my whole body hurt - for weeks with neck pain occurring first. Also, my reactions are very different now than they were in the first few months after going gluten-free when accidental contaminations were more frequent.

I also don't eat out at all because I always get glutened, even ordering items that were supposed to be gluten-free at restaurants that were supposed to know what was up. (I do have a sushi restaurant that hasn't poisoned me yet.) Friend's houses have the same contamination issues as restaurants but at least there you can bring your own food.

[nvsmom]

I think it could have been gluten or food poisoning.  Sounds nasty either way.

 

I'm sure someone will chime in with similar symptoms... I hope you are feeling better now.

[KCG91]

Thanks guys. I eat out (with as much care as possible, that's the decision I feel is right for me) and drink in moderation and have done since diagnosis without problem, which is why this reaction after a fairly routine event surprised me. 

NatureChick that's interesting about you and your sister having such different reactions (except for neck pain). I've read so much about symptoms that I'd forgotten what was usually pre-diagnosis and what was after a glutening.

 

Incidentally, it's won me a bit more support from my parents on the standards I impose on them when I go home and making a fuss over where we go if we eat out. Years ago my auntie had really bad food poisoning which triggered some sort of rheumatoid arthritis (the key issue was that food poisoning had set off an autoimmune reaction) which she has never fully shaken off (I can't remember the name of the condition) and which basically scared the cr*p out of us all because she was in intensive care before the doctors worked it out. Anyway, now they understand that gluten = scary scary joint pain they seem to be taking it more seriously/have more respect for it. Not that they were bad before but y'know, they're better now! Every cloud... 

[w8in4dave]

When I react it is similar  to being really really drunk. When I don't drink, I am on the floor retching for hrs. the next day I have absolutley no energy! I don't necessarily feel neck pain or havn't noticed because I have pain all over. It is so horrid a feeling! I do not eat at anyones house, unless I take food and pan and cook it myself. I usually bring a dish to pass and I eat out of my dish first then let everyone eles CC it and I am done. Just make sure you get enuf the first time! No seconds. I always bring some gluten-free chips like beanitos , and some dip. I do have a fav. restaurant because when I first went there my friend ordered a salad. It came with cranberries and I forget what eles she ordered the cranberries and didn't get them. They apologized and said they had CC'd the cranberries and had to open a new package. I thought wow she isn't even Celiac and they worry about CC. I have never been Glutenized there.