Hi, I'm New From Australia

[snapdragon]

Hi everyone, I've been reading the forums for a couple of days now, and am sitting here saying 'Yes, yes, YES!' as I read through others experiences and symptoms. It all rings very true for me.

I'm going to my doctor next week to have the blood testing for celiac, or at the very least to find out exactly what is wrong with me!

I've had 'symptoms' since I was a teenager. Actually, according to my mum, I've had symptoms since I was a baby when I reacted to dairy and was diagnosed with asthma at the age of 2. As a result of my asthma, I spent much of my childhood feeling unwell, out of breath, and just didn't have the energy to do what all the other kids did.

As I became a teenager, I started getting bouts of fatigue, strong nausea, the most horrible 'growing pains' in my legs at night that cause me to wake in tears, very painful mouth ulcers, painful gas and bloating and bouts of dermatitis as well as mild depression and anxiety.

I'm now a mother with 4 children, and my symptoms have continued into adulthood. Some days I just feel wiped out, with no energy or anything. I still get mouth ulcers, I just had two last week that made my whole head hurt. I still have asthma - I rarely have asthma attacks, but frequently find myself breathless. My ferritin levels are hugely low - the last time I had it checked it was about 30 when I should have been about 180 at least. Since I've had my last child, I've had bouts of vomiting and diahorrea, very painful gas (which works its way upwards until I have bad chest pain), heart palpitations, joint pain, headaches and the list goes on.

I've recently (in the last couple of months) cut out all dairy from my diet, as I'm breastfeeding my 8 month old and he's allergic to cows milk protein. I probably shouldn't be having dairy anyway, as it has caused problems in the past. I was also interested to find out whether dairy was what was causing my problems in the first place.

I felt great to start with - heaps of energy and I felt totally awesome. Now I'm starting to slump again, keep having the stomach problems and mouth ulcers among other things. I'm strictly dairy free, because it upsets my bub so much, so I know there's something else.

So I've been doing some research, and it strikes me that celiac is a possibility. What do you all think? I've read that you need to be eating a fair amount of gluten for the blood tests to be viable, and I've discovered that while I haven't been gluten free, I seem to naturally choose food options with less gluten. So, starting yesterday, I'm on a mission to eat heaps of gluten and pay attention to how it makes me feel.

So, it's day two and not good. I think I'm feeling effects almost immediately. I've had toast and weet bix (wheat biscuits) for breakfast, sandwiches for lunch, pasta for dinner and I feel sick. My joint pain is really quite bad, especially in my wrists. My legs start to ache, I have a headache that won't go away, and I can feel gas bubbling in my stomach and my stomach also keeps rumbling, despite me eating heaps.

I should also add that I had a really bad episode of dermatitis about three years ago. It was on my legs only, but in the exact same spots on both legs. It started out as watery blisters, but just looked like a mess in the end because I couldn't stop scratching it. It was the most insanely itchy rash I've ever had. I went to a doctor at the time who said it was dermatitis and prescribed me a cortisone cream for it. Even with that it took months to disappear! And I still have very faint patches of scarring/discolouration on my legs where it was. Maybe it could have been DH? I've had nothing like it since.

Anyway, sorry this is so long, it just feels like a lightbulb has gone off in my head and my life just might be making sense. But then, it might not be celiac and then I'm back to square one.

[book-worm]

Hay, good to see another Ausie hear.

I know exactly where you

[snapdragon]

Hi, thanks for replying

That's exactly what I love about this forum, it doesn't feel like I'm the only one, or 'just a hypochondriac' anymore. That the problems I'm having are real, not just in my head. I saw a doctor last year, before I knew about celiac or gluten intolerance, and she just told me to take iron supplements and get more sleep. There's nothing wrong with how much sleep I'm getting!

Just a quick question for anyone out there, if the doctor I'm seeing asks what a 'full celiac panel' is, (I'm hoping they won't!) what are the specific tests I need to ask for? I'll get my ferritin etc done again, and from reading on here I need to get tTG and anti gliadin IGA, is that right? Is that all? I'm so confused, and I want to make sure it all gets included, just in case something is missed!

[mushroom]

The following tests are considered to be the "full celiac panel"

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

A new test, not in common usage yet, is the deaminated gliadine peptyde (DGP)

[snapdragon]

Thankyou so much!

I'm feeling truly horrible today, not looking forward to breakfast when I get back from taking the kids to school. I had stomach pains all night, so I imagine it will only get worse today. I'm looking forward to being able to trial a gluten free diet, but unfortunately unless I'm diagnosed by the 'gold standard' of a biopsy, then I can't be registered with the Coeliac Association here. And that entitles me to special discounts at supermarkets and extra support here. But, if the tests come up negative, I'll be going gluten free anyway!

[Black Sheep]

Hi Snapdragon! I'm sorry I have no idea which exact tests for the panel you should ask for, as I haven't been tested, either....but someone here will know. I was reading your post and thinking, This could have almost been me. I just did my first post yesterday, the one where I was asking about the oat flour, and several of the things I mentioned coincide with things you mentioned. Except in reading your post, I forgot to mention that I too, have had depression, off and on for--I don't know, sometimes I think all of my life, as I certainly wasn't a happy child. When my son was born I had horrible post-natal depression, which eventually went away on it's own, then when I was 28, it hit me again, and I ended up in "counseling" (wow that did a lot of good ) and was given Prozac, which thank God worked for me, and didn't make me suicidal like some antidepressants have made some people. I took it for a few years, then seemed fine so I weaned myself off it. But a few years later I started experiencing these wild mood swings--it was horrible. I was horrible! Eventually going to a Naturopath and being put on fish oil and vit. E (plus other stuff) got rid of the weird mood swings, which had been diagnosed as depression. But this last year I've had bouts with depression again that last anywhere from a day to a week or so.

From what the docs have told me, and from what I've been reading as I've researched celiac disease on this site and others, I'm pretty much convinced that gluten is the root of most, if not all, my many, many, various health problems. I mean it's an unbelievably long list! Well, I take that back, I'm sure the people here would believe it, as they've been there, done that. It sounds as if you have a problem with gluten too, especially as you experimented with yourself and felt so awful so soon after eating it. I have also heard that the blood test can often-times give a false-neg. reading; however, I'm also told that a co. called Enterolabs (or Entero Labs? Can't recall, but I'm sure someone here knows) has an at-home stool test you can do that will show if you have any of the antibodies, even if you've been g.f. for awhile. I'm going to find their website and check them out myself when I'm done here.

It's been two weeks since my doc told me to try going for 1 month g.f. and see how I feel; since I don't have insurance and already had to have so much other blood work done, she knew I couldn't afford it. I still feel terrible, but the last couple of days I've not been plagued with diarrhea, "pins and needles" feeling in my feet and legs, or insomnia. So even if your blood test turns out neg., you might still want to go g.f. and see if it helps, and also get the test from Entero Labs.

Glad there's another newbie here like me!

[snapdragon]

Hopefully you'll be feeling better soon from going gluten free. I've heard it takes a while before your body starts to heal. I mean, if we've had celiac our whole lives, just not knowing it, who knows how much damage has actually been done! It's a bit scary really.

[nutralady2001]

Thankyou so much!

I'm feeling truly horrible today, not looking forward to breakfast when I get back from taking the kids to school. I had stomach pains all night, so I imagine it will only get worse today. I'm looking forward to being able to trial a gluten free diet, but unfortunately unless I'm diagnosed by the 'gold standard' of a biopsy, then I can't be registered with the Coeliac Association here. And that entitles me to special discounts at supermarkets and extra support here. But, if the tests come up negative, I'll be going gluten free anyway!

Welcome ! You don't need a positive biopsy to join the Coeliac Society just a letter from your doctor saying you need to be gluten free

[snapdragon]

Thankyou for letting me know that! That's terrific It does make things easier if I end up with negative test results. I can't wait to try and be gluten free. I'm 99% sure it's gluten that's causing me all this grief at the moment.

[Black Sheep]

That's great that you'll be getting discounts at the supermarket! So, do the stores there in Australia tend to carry a lot of certified g.f. products? I live in a small town; sort of near Seattle but definitely not near enough to make driving or taking a ferry all that way worth it! So consequently, it's hard to find much in the way of g.f. food or even a lot of organic food, for that matter. So if need be, I guess I'll be ordering stuff online.

Where's my debit card?

[Jestgar]

Hey BS! Dunno where you are, but Central Market in Poulsbo has lots of gluten-free options.

[snapdragon]

Hi Black Sheep The supermarkets here seem to have a lot of gluten-free products in them, though I've never been gluten free, so I don't know what it would be like to be reliant on them. I think the food standards here say that if a product is labelled gluten free, then it has 'no detectable gluten' in it. So there's no need to second guess ingredients as long as the product has 'gluten free' on the label. I live in the tropical north of Australia, so our options here are limited, but I believe places like Sydney and Melbourne have gluten-free bakeries and things. So, it's probably a good think I don't live there!

[Black Sheep]

Hey BS! Dunno where you are, but Central Market in Poulsbo has lots of gluten-free options.

Funny--I was just remembering how Central Market was the only place I could find light buckwheat flour in their wonderful health food section. So I was trying to determine if it would be cheaper to make the looong drive there and pay their astronomical prices, or pay the astronomical prices online plus shipping cost. If it turns out to be cheaper to go there, I'm willing as soon as I've healed enough to have the energy. At the moment I'm having a really hard time getting up the energy to drive the 10 mile round-trip to Fred Meyer for some g.f. stuff.

BS? lol I think I need to change my name, if they'll let me!

[Black Sheep]

I believe places like Sydney and Melbourne have gluten-free bakeries and things. So, it's probably a good think I don't live there!

Same here! It's bad enough I've been on the hunt for g.f. beer (found some, too!)!

[anabananakins]

Snapdragon, while reading your post I kept nodding to myself. I'm going to the doctor tommorrow to request blood tests. I've been reading so much over the past few months I'm just worried about coming off a bit too know it all ish. But if you don't research this stuff, no one else will tell you. And the more I read, the more lightbulb moments I keep having. So many bizarre, unexplained symptoms that I might be able to blame on gluten!

I got diagnosed with PCOS and insulin resistance last year, and all everyone kept stressing about was the infertility side of PCOS while since I don't know if I want children, I was much more concerned about my risk of diabetes and heart disease (especially given my family background). Getting pregnant is the major focus of many of the women diagnosed with PCOS and all the best to them, but I annoyed that it was so much focus on fixing an immediate problem and not looking at the long term stuff. If I hadn't researched it for myself I would have been sent away and then wondered why I had diabetes in another 15 years. As it was I found the name of the specialist I wanted to see, found a new GP and demanded a referral and I know now I'm in good hands.

It was as a result of tinkering with my diet that I started to suspect celiac. With insulin resistance it really helps if you eat a low carb diet. Since the middle of last year I'd gradually been cutting down the amount of wheat I was eating and was feeling all round a lot better but I assumed it was related to my insulin levels (and it probably was, at least partly). Then over christmas I ate tonnes of gluteny food and my joints went back to aching like crazy and I was exhausted all the time. Then in January I cut out everything except meat, fruit, vegies, nuts & seeds and a bit of dairy and I felt fantastic (I'm also in Australia so I was eating tonnes of fruit). When slipped up at a party and ate something with wheat in it, I got crazy stomach aches and D. This happened on and off over a few weeks and I got suspicious and started researching. So over the last 6 weeks I've been eating heaps of gluten at every meal in preparation for the tests and I feel permanently exhausted, my stomach aches after every meal, I have heartburn and all manner of digestive issues including a stomach that makes me look pregnant. Yet I know I'm going to feel so awkward tommorrow asking for these tests. I had a friend diagnosed with Coeliac when we were 20 and he was one of those who had crazy weightloss, D all the time and we had fears before his diagnosis that it was HIV. I always thought it was a really rare disease - I'm shocked to realise that there are so many annoying but not not-important seeing symptoms that I've had that could all be linked. The neurological ones in particular are scaring me - I have very bad balance and frequently walk into things and I always thought it was just a funny quirk of mine (I know, WTF?) A year or two ago a chiropractor noted that my balance was particularly bad (if I do that test where you put your feet together and close your eyes, I tip straight over but everyone I've gotten to try it has been fine) in comparison to a lot of his patients, but that didn't worry me. And then I start reading about gluten ataxia...

Sorry, didn't mean to ramble so long. It's nice to see another newbie - especially an australian one! (I'm in Sydney)

[gf-soph]

Hi there

I think the other posts have said pretty much everything I would have, except to ask where in Aus you live? I live in Sydney and have a very supportive and informed GP, if you find yours isn't so great then I can give you the details. If you're not in Sydney I'm pretty sure if you contact your state celaic society they may be able to point you to someone more informed, or indeed ask on the board.

I am a member of the celiac society and I had positive blood tests and a negative biopsy, you just need a drs letter saying you need to be gluten free for medical reasons. Keep an eye out for the gluten free expos that happen a couple of times a year, in Sydney there is one in August and one in November. They are great for finding new products, there are cooking demos, expert speakers etc. Well worthwhile and you wont want to eat anything for the rest of the day from all the yummy samples.

Some other advice for you - many people find they come up with other food intolerances after going gluten free, some of which resolve over time and others dont. If you suspect this after going gluten-free, try the elimination diet developed by RPA hospital, it's extremely thorough. Your Dr can refer you to a dietician with a medicare referral, I saw a great one in St Leonards.

I hope you get the answers you are looking for through testing, but it sounds like it's well worth a try of a strict gluten-free diet regardless of the outcome

[Cranberry]

Hi!

It's so good to hear that you have found the cure for your problems! We are really lucky in Australia to have so many wonderful food products that look after our needs. Even cafes and restaurants are happy to provide gluten free options. My local pizza bar makes me gluten free pizza it's just great!!!

Health food shops have a great range, Coles is really into it and the taste and selections of products are just getting better and better. There really isn't too much to worry about these days. I even got some delicious hot cross buns www.lifestylebakery.com.au

So glad to hear that you can now live your life feeling great!!!!

[anabananakins]

Hi there

I think the other posts have said pretty much everything I would have, except to ask where in Aus you live? I live in Sydney and have a very supportive and informed GP, if you find yours isn't so great then I can give you the details. If you're not in Sydney I'm pretty sure if you contact your state celaic society they may be able to point you to someone more informed, or indeed ask on the board.

Not sure if you'll see this gf_soph but I was hoping you could let me me know your doctors name. From the location of your dietician, I don't think we live all that far apart.

I got my results back recently and my GP doesn't think celiac is an issue and is back to focusing on my pcos / insulin resistance. But while insulin resistance could be causing the intense fatigue (particularly since the gluten challenge meant eating stuff I wouldn't usually eat) it doesn't explain the GI issues I've had since going back onto gluten after a period of being gluten free. I had the blood tests at about 6 weeks, I should have waited longer.

[gf-soph]

Not sure if you'll see this gf_soph but I was hoping you could let me me know your doctors name. From the location of your dietician, I don't think we live all that far apart.

I got my results back recently and my GP doesn't think celiac is an issue and is back to focusing on my pcos / insulin resistance. But while insulin resistance could be causing the intense fatigue (particularly since the gluten challenge meant eating stuff I wouldn't usually eat) it doesn't explain the GI issues I've had since going back onto gluten after a period of being gluten free. I had the blood tests at about 6 weeks, I should have waited longer.

Hiya - just happened to see it

My GP is Margaret Hardy, works at Gladeville Medical - 3A Pittwater Road Gladesville 2111. 02) 9817 2522.

They don't bulk bill unless you have a health care card, but she is worth it gap payment. She got me to go gluten-free after being told not to bother by a gastroenterologist. She is also very good at listening and *thinking* about what is going on, not a common skill in the other GPs i've seen. She is pretty busy, so I would recommend making a long appointment and bringing along copies of your tests. If i'm feeling a bit brain dead I sometimes write a list of symptoms or areas of concern, helps to make sure I don't forget anything.

I was investigated for PCOS/insulin resistance as well, turned out not to be my real problem. Have seen dietician and immunologist, am now going for endoscopy/colonoscopy with the centre for digestive dieases in five dock, which she referred me to after seeing a presentation of theirs about a bacterial overgrowth case. They seem a bit more cutting edge, treat c-diff etc.

Good luck!

[anabananakins]

Hiya - just happened to see it

Thanks so much for the details! How funny, I used to live about 2 minute walk from there (just across Victoria road, it's no longer called Pittwater road there but is basically the same street). I'm over near Cremorne now but if I don't answers from the doctor I'm seeing in a couple of weeks then I will call up yours. Good tips about writing the symptoms down first, I always go brain dead in appointments :-)

I've heard a bit about the place in five dock - hope they're able to help you!

Thanks heaps for the reply and details and all the best to you :-)