Medusa
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Hello! I'm a British expat living in Sweden, soon to be moving to NZ. Both of my daughters have been fairly recently diagnosed as having coeliac disease, my dad has had it for nearly as long as I can remember, and having gone gluten free as a family I'm now finding that I'm a whole lot healthier without gluten too. Awareness of gluten intolerance is extremely low in Sweden, so it's been wonderful for me to be able to read all your posts and have access to this community's combined wisdom. Sooner or later we all run into the same kind of problems and it's such a huge relief to find that I am not alone. Thank you! 
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ARCHIVED First Menstrual Period gluten-free, Feeling Aweful!
Medusa replied to possiblyglutensensitive's topic in Coping with Celiac Disease
If it's any consolation my periods are way better since I went gluten free. They are less painful, shorter and best of all I have so much less PMS beforehand - it used to be awful and last up to two weeks before my period started. I used to feel like my hormones ruled my life - in a very negative way! They are not very regular now, but that could be because... -
ARCHIVED Could 6 Or 7 Yr Old Have It With Not Lots Of Symptoms?
Medusa replied to mommyto2kids's topic in Parents, Friends and Loved Ones of Celiacs
Nobody ever got sick from gluten deficiency. Try the diet and see if it helps! Wait until after the tests though, since they are so soon anyway and going gluten-free now would mess them up according to the medics. A gluten-free diet is worth trying anyway though, even if you don't get a diagnosis - see all the other posts on these forums about that issue... -
Could also be a twisted kind of denial - some people are soo determined to "prove" that celiac is all in your head they will try and prove it to you by "testing" you - secretly or openly - by glutening you on purpose. If she is having to face the possibility that actually, she might need gluten free food too, but doesn't want to accept it, that can only make...
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ARCHIVED Brain Power Getting Lower And Lower...
Medusa replied to Pyro's topic in Coping with Celiac Disease
Poor thing! That's horrible. Have you had your thyroid activity checked lately? How certain can you be about cc - some people are incredibly sensitive to even tiny amounts of gluten, maybe you are one of them? (Sharing a teflon coated pan with a non gluten-free cook could be enough). I tend to agree with the others - time to get checked up by a doctor... -
No worries! I am so used to people thinking I am a nutter for believing my daughter's neurological symptoms are coeliac related I am probably just horribly over-sensitive! It did occur to me that I should have offered some sort of evidence for my statement - it does sound far out! This is a good summary: Open Original Shared Link You know...
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I mentioned this because my daughter suffers seizures when she has been badly glutened which look like epilepsy (she falls unconcious and cramps violently) but according to the medics are something different as they last too long, up to a few hours at worst. Possibly extreme migraines as she gets a visual aura first. The attacks have continued even after...
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Have you looked in the Gluten Intolerance and Behaviour Forum? There's loads of stuff there which strengthens the argument for a neurological connection. I've also heard of research on epilepsy which fails to respond to medication but is relieved by a gluten-free diet.
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ARCHIVED I Thought Hurrrrah Until This Morning...
Medusa replied to rgarton's topic in Coping with Celiac Disease
It took ages for my insides to go back to normal after I quit gluten - not unreasonable, after a lifetime of damage! In fact, for a couple of weeks after an initial honeymoon period, I actually felt worse before getting better again. But I did get better! Hang in there! Depending upon how sensitive you are, cross contamination could be an issue, even... -
Ha! Maybe I am just senile! Just remembered that there is some interesting stuff being done in Christchurch, NZ on the possibility that gluten has neurotoxic effects and isn't *just* a gastrointestinal issue... A very quick google revealed this: Open Original Shared Link I'm sure I remember reading something more recent in the paper though. Now where...
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My daughter was getting cc problems from the so-called "gluten free" food at school which we found out about when she got physically sick. Talking to her teacher we discovered that she was way behind in school and was struggling to scrape in half marks in her weekly tests. Apparently she did no work at all after lunch. I started sending a lunch box from home...
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ARCHIVED Behavior Signs In Teen
Medusa replied to My3B's's topic in Parents, Friends and Loved Ones of Celiacs
We found out my eldest was having problems concentrating in school after she got physically sick from cc in the school meals. Only then did her teacher say that no work got done after lunch and that she seemed to be in a dream all afternoon... I started sending a lunchbox with her and her weekly test results improved dramatically, from barely scraping through... -
ARCHIVED Gluten Contamination Problem In School Meals?
Medusa replied to Medusa's topic in Parents, Friends and Loved Ones of Celiacs
A quick update - my daughter went from scraping through her weekly tests with half marks to getting full marks (even in maths) once she stopped eating the "gluten free" school lunches and just ate what I sent from home. Her teacher *was* surprised! Does that count as scientifically proven? Thanks again! -
ARCHIVED Symptoms Like Tourettes In Newly Diagnosed 9Yr Old
Medusa replied to Mummyto3's topic in Parents, Friends and Loved Ones of Celiacs
I know when my eldest has been accidentally glutened because her behaviour gets so odd - she gets loud, agressive and hyper and this is wierd, makes loud sudden noises for no apparent reason. On the occaisions when she has been severely glutened she passes out and suffers convulsions - there's no doubt in my mind that gluten can have severe neurological side... -
ARCHIVED Does Daughter Have Celiac Disease?
Medusa replied to stanleymonkey's topic in Parents, Friends and Loved Ones of Celiacs
It really sounds a lot like celiac - you won't necessarily get positive tests results though. I'd agree with Shadowicewolf that it's worth trying a gluten free diet - you could well see results pretty quickly, my kids improved literally overnight. It doesn't have to be super restrictive, there are a lot of options out there if you are prepared to spend time... -
ARCHIVED Is Red Around Eyes A Gluten Reacton
Medusa replied to Mizzo's topic in Parents, Friends and Loved Ones of Celiacs
My daughter gets eczema round the edges of her eyes, looks like she's been crying, or at worst like conjunctivitis - it clears up when she's gluten free. A recent problem with cc in school dinners seems to have brought it back on again, but it's going away again now she's taking a lunchbox. Must be a connection! I had huge dark rings under my eyes before...