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About Medusa

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  1. 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 of the stress of imminent emigration... ;)

    I agree with the idea that cycles have a run in time of a couple of months - it may take a while to see positive changes, but yes, absolutely gluten issues affect hormones in the body - how about the effect on thyroid levels for an example?

    Gluten/wheat derivatives turn up in the weirdest places. It really wouldn't surprise me if it was in sanitary products too.

  2. 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!

    One of my kids is tall, very strongly built, the other petite and slim - not sure there's any correlation there. The eldest did break both bones in her forearm really badly jumping off a kitchen chair and landing on the concrete floor though (pre diagnosis). One bone snapped, the other shattered and bent like a banana. The surgeon had never seen anything like it. Looking back, I don't think it was coincidence. Both kids have terrible teeth. So does their dad and his (untested gluten-free sceptic) sister and mother. Hope that helps!

    Good luck!

  3. 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 matters worse.

    We got round any such issues by going gluten free as a family, it doesn't have to be expensive although it can be limiting at times. Actually, we all felt much better for it. If your sister is that anti-gluten-free, she might then move out and solve your problems!

  4. 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, if only to rule out all the possibilities you are probably worrying about. Hope you get better soon.

  5. 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:


    You know what they say - the British and the Americans are "two peoples divided by a common language"! ;) Oh help!

  6. Yes...what she said!! LOL

    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 the intial "poisoning" (what else can you call a huge plate of ordinary pasta for school lunch!!!) which put her in hospital, although they have got milder, leading me to believe that some serious neurological damage was done which is hopefully now healing to some extent. A lot of the comments in the behaviour forum rang a bell too.

    I certainly didn't mean to be funny.

  7. 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.

  8. 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 from cooking utensils, etc. My daughter got quite sick from gluten-free bread made in a very well-washed teflon lined bread making machine. We are going to have to bin it and get another one... She has also had problems with the "gluten free" school meals cooked with the same utensils and equipment as the ordinary meals. Sometimes washing stuff thoroughly just isn't enough. If you are sharing cooking facilities with non-gluten-free cooks it is worth having your own pots and pans, etc.

    Hope this helps. Good luck!

  9. 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 and the results were immediate and amazing - full marks in all the tests and no more lost afternoons! Empirical evidence for hubby if he needs it! ;)

    My symptoms were more like MS - clumsy, shaky, terribly tired, poor memory - I'd have notes all over the place to remind me what to do. Some days I'd have trouble speaking properly, almost as if drunk. I am fine on a gluten free diet. :D

  10. 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 to full marks. I wish her teacher had talked to me earlier, instead of just getting mad at my daughter for being "lazy and forgetful"!

    I always wonder how many other kids are suffering the same fate...

    Good luck!

  11. 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 effects in sensitive individuals.

    The itchy rash could well be eczema - a scratchy label in clothing can be enough to set it off. DH looks like "mini chickenpox" and is super itchy. Changing laundry powder for something milder (without enzymes) and skipping soap for a bit can help, as can a good moisture rich skin cream (hemp oil is great) and flaxseed oil food supplements. We found that our eczema pretty much cleared up once we went gluten free.

  12. 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 reading lists of ingredients! Can you get advice from a nutritionist/dietitian? Other food sensitivities can become milder once you deal with the gluten problem and the gut starts to heal. Good luck!

  13. 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 going gluten free - they're gone now! It's been better than a face lift! ;) I think you really can see when some people have been glutened.

  14. Hello Mushroom!

    We are moving to Oxford near Christchurch, at least to start with, as that is where my folks and my sister live. The house in Sweden is sold, the plane tickets are booked and we are on our way! All we have to do now is pack... :blink: We'll be arriving in Christchurch on the 13th August. :D

    School lunches do seem to be universally awful, don't they? I went to school in England, and some days the food was just inedible! I seriously wonder how many of the behavior problems in school are down to the awful food. It's like with computer programming: "rubbish in = rubbish out"! How many adults do a good day's work on an aching stomach? Oh no! Here I go ranting again! ;)

    Where abouts are you based?

  15. Not sure where you are geographically, so not sure if you can get this, but I use a herbal supplement called "Dida" when I feel yeasty - it seems to be mostly cinnamon oil, oregano and garlic. I've seen similar supplements under different names outside of Europe too.

    Homeopathy can help with hormonal problems - Sepia might be worth a try, or better still consult a homeopath so they can find the right remedy for you! Going gluten free made a huge improvement in my awful PMT - must have hormonal effects I think. On the basis that the cycle your are trying to influence runs for a good 28 days, you may need time to see results. Good luck!

  16. This is really fascinating. I notice big personality changes in my daughter when she's been glutened - sometimes that's the first warning sign I get that something is wrong.

    I think our spirituality must be influenced by so many factors - personality, family, community, state of health, that inevitably major changes to any of these will change our outlook, and that's probably healthy. We need to be able to adapt to changing situations in life.

    Shamans and mystics across many traditions have traditionally induced mystical experiences by fasting, isolation, sleep deprivation and mind altering chemicals, so perhaps we shouldn't be too shocked if gluten intolerance messes with our psyche.

  17. My whole family do dramatically better on gluten free food, but all of us have had negative tests at some time. The tests just aren't that reliable, yet people put such great faith in them! I feel quite strongly that the most reliable test is going properly gluten free for a while and seeing if it helps - it may take some time to feel better if the damage to your system is severe, so hang in there.

    Gluten intolerance appears to be strongly genetically linked, try asking for the genetic testing. My daughters and I have the genetic predisposition for gluten intolerance, so we get a bit more respect from the medics even if our bodies won't cooperate and give a nice positive result all the time on their other tests!

    You mention you have a new job - stress makes everything worse, especially conditions like celiac. Stressful events can even trigger the onset of celiac in susceptible people. My daughter started getting problems with her stomach when she was getting bullied at school. Coincidence? Try and find ways to lower your stress levels which work for you. (I'm a yoga nut!) I know it's not easy when you are feeling so ill.

    I second the idea of finding another doctor. We got nowhere until we found a sympathetic doctor. They can't be specialists on everything, but even so it's alarming how little many of them know about celiac.

    I was really ill when I was pregnant with my first child. When I got really dehydrated I used the reydration mix they sell at the pharmacy for kids with diarrhea. A teaspoon of sugar and a pinch of salt in a glass of warm water works just as well. For some reason it's easier for your body to absorb than water by itself. Arrowroot powder cooked into a runny sauce with water stayed down too, though the flavour leaves room for improvement! Rice water works too.

    Good luck!

  18. I would love to homeschool for a number of reasons besides the food issues, but unfortunately the authorities in Sweden have made it virtually illegal. (One kid ended up in care because his folks insisted on homeschooling him!) The good news is that we are moving to New Zealand soon where they have a much more humane attitude, everyone takes lunchboxes and homeschooling is accepted.

    Unfortunately the Swedish notion of fairness expresses itself in a belief that everyone ought to be exactly the same - the infamous "Jante law", which doesn't leave much room for diverging from the norm, even if you aren't doing it on purpose! We have just over 4 weeks left at this school, so I'm trying to make the best of a bad situation - and help the other kids who think they are getting gluten free food!

    I think I am almost most disappointed in the class teacher who has been nagging my daughter about her poor performance, but hasn't said a word to me. It seems she put it down to my daughter being bilingual! :blink: I think the head of the kitchens is in a personal state of denial about her own family's gluten problems, plus she regards herself as an "expert", and those people are often the hardest to deal with. The younger kitchen staff have been much more helpful and have even spoken out on the need for separate cooking facilities.

    Thankyou all so much for your support! I can't tell you how much it means to me. :)

  19. Oh, it gets worse! I got called in on Friday for the inevitable dressing down by the class teacher - it's not fair on the other kids that I send a lunchbox with my daughter, apparently. The teacher also took the opportunity to tick me and my daughter off about the fact she is getting so behind with her schoolwork. Apparently she just drifts off in the afternoons and can't get anything done... Are alarm bells ringing for anyone else? :o I asked the teacher how much work she personally gets done when she has a bad stomach ache. How stupid can they be?! They are also aware that my daughter passes out if she ingests enough gluten, so lack of concentration is likely to be a problem. But the school kitchens say their food is gluten free, so obviously my daughter is backwards or lazy... Poor kid. It makes me want to hit someone.

  20. Many thanks for all your comments! It looks like I'm going to have to send my daughter with a lunchbox again. I finally got hold of the person actually responsible for preparing the special meals and she really hadn't got a clue. First she told me no meatballs ever have gluten in (but we know they do, don't we? Even if they've just rolled them in flour...) She claimed there was no possibility at all of having separate utensils for gluten free meal preparation. The pancakes and the meatballs would all have been cooked on the same hotplates. Then she told me that her own daughter had had awful stomach ache but tested negative for coeliac, so they were giving her Gaviscon for her "too strong stomach acid", why didn't I just try that?! I became concerned that her daughter may well have been misdiagnosed - we've all had negative test results on occasions. Then she got stroppy and said my daughter must have eaten too much of the carrot... At which point I felt she was either very stupid or making fun of me. It's frightening, isn't it? This is the head of the school kitchens and allergy expert we are talking about here! I'm going to phone her up again tomorrow and ask just exactly what went into that meal in terms of actual ingredients and cooking procedures, but I don't give much for my chances. I was frankly shocked that they make no real effort to keep the gluten free food separate at all, even though they themselves say that they have a large number of pupils requiring gluten free food. Such a contrast to the situation for people with nut allergies! Can you imagine anyone telling them to like it or lump it?

    There are fairly major social hurdles to bringing your own lunch here in Sweden - everyone eats the school lunch. Not doing so leaves you open to being frozen out, almost on principle. I think we are still going to have to do it, as the consequences for my daughter of being glutened are so horrible.

    Thanks again!