This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Thanks so much Georgie, I would really appreciate a PM re your GP's contact details. (And please forgive my techie ignorance... but does a PM just arrive at 'My Profile' page? Or should I enable something?)
Many thanks also to Cranberry, I followed your link (above) to the new Sue Shepherd base in Adelaide and am booked in for next Wednesday! As they are so very new here they do not yethave long waiting lists. V friendly and informative too.
I'm walking on sunshine, so good to learn that there are informed medics/dieticians here in lovely Adelaide. And it does feel kind of weird that on this international forum, one can casually mention The Central Market and The Parade (I almost literally live between them). Have you heard of 'Free' cafe/store on Unley Rd?
My first post to this down-under sub-forum. I'm Kiwi born, but mainly raised (and currently live) in South Australia. So I guess I'm double OK to chat here?
After many symptoms consistent with coeliac, and then a negative endoscopy (went gluten-free anyway), I've recently been diagnosed with Lactose Intolerance from same endoscopy a few weeks later. Thus have been refered to a dietician who (via my information gathered from the telephone-call and her commercial website) seems to specialise in gastro-bands for weight-loss and hasn't heard of Fructose Malabsorbtion...which the Eastern States of Australia/UK/USA seem to have heard about... hello?! I'm quite skinny at the moment, so I'm pretty sure, she'd send me away with her $200 30 minute consultation bill and a cup-cake! Um, cancelled that appointment... and made another with local GP to see if he can recommend a better dietician than the gastro-doc... but I somehow get the feeling that the Adelaide docs are a bit out of the loop.
I would really like to hear if anyone knows about about a South Australian medic/dietician that is good with gluten-intolerance, lactose-intolerance, frucose malabsorption. Or should I just telepone/fly to the Eastern States?
Thank you (again), especially for the extra information and experience about mercury and metal-tests etc.
Also, sorry if I sounded a bit cranky in my previous post. To be honest, I was a bit... its just that my female hormonal troubles (inc two miscarriages) have been under-estimated and questioned by many for years... and now in recent times... so have the severity of my (now diagnosed... phew!) food-intolerance related symptoms... which have basically shattered my life in the last months. Also, I ate a gluten-free pre-packaged product yesterday, and have been very ill today... so my crankiness was probably already elevated yesterday. No more processed food! I'll try to stick to organic whole foods, but its tricky, as many fruit and vegies seem to also be 'wrong' for my body. But I see a dietician soon, so hopefully I'll get through this maze, and find a baseline diet from which to take challenges etc (with, obviously, the help of members in this great forum).
Thanks Loey, yes this forum has helped me greatly, its not just the information and advice but the understanding and care. I no longer feel alone, lost, afraid and helpless. I too have a teaching degree, and have done subbing/supply/relief teaching in the UK and Oz. More recently I have been teaching at uni, but I've had to take leave as I have been so unwell in many ways. And yes, even paperwork is a struggle for me at the moment... even all the medical forms are a huge challenge. But I know I'm on the right track now. I see a dietician for more tests and guidance soon. I had two really good days, but then yesterday I made felafels from a packet from a gluten free store... and today I feel pretty rotten... I'll just let it work its way through my system... and avoid those sort of pre-prepared foods. (Always learning!).
Thank you, I am open to any information/advice, just like your profile name "looking for answers"
Re: the mercury in canned fish, yes I have heard of this, and now (thanks to your link) I am very aware of it. However, (I think ) my quite severe and many celiac symptoms began 10 years ago, and it is only in the last couple of weeks that I have resorted to to canned tuna (easy to stock in the pantry when I'm too ill to get out to buy food etc). Anyway, I'm sick of them, I just thought I needed protein as I was getting a bit thin. (I've been eating lentils/cheese etc for protein for many years, but in the last months they go straight through me).
Also, I will search online for information about being intolerant around strong odours (inc blood/urine tests).
And now to the eggs and meat. My female hormones have been a problem since I started my (highly irregular) menstrual cycles at age 14. I have noted that eggs in particular have left me with constant PMS for weeks... but (silly me) I've never really bought my own organic/free-range/non-pumped-with-hormones eggs and seen how I was with them. I may now, as there is not that much left for me to eat!
gf_soph, you really made me laugh about the food diary being like a prison log... I hope you don't feel the need to wear an orange jump-suit! Yep, I kind of think 'why do I have to do all of this when others skip happily through their lives' but, hey, like everyone here... feeling better is our aim, and perhaps we appreciate the 'normal' things more.
I took your tip onboard, and joined Yahoo Fructose Malabsorption Australia.
Also, I agree, I think its best to go fodmap first, and then RPA (will obviously discuss with dietician).
I can relate to both: eg I never understood how people could chomp on an apple at morning-tea-break etc without feeling spacey, gassy and with a horrible taste in their mouths (possibly FM related for me). Then again, I have always felt very ill near strong perfumes, petrol, newspaper-ink etc (possibly RPA related for me)
And lastly, I have been relying on avocado as a substitute for butter, and then got kind of hooked on them. My head felt like a bowling-ball that my neck could not support. I cut-out the avocado, and the bowling-ball went.
Thank you gf_soph, your information, personal experience and online links, have really helped me through this hazy maze of my own research (...and what to ask, when I see my dietician, and what to expect re possible breath tests... and, I agree, I'm pretty sure a low FODMAP diet won't corrupt results).
So FODMAP and RPAH are dealing with intolerences / allergies from quite different angles, and differnt methodologies / diets. I gather in your two-year-journey you have found ways to combine gluten-free, FODMAP, and now (possibly favoured?) RPAH elimination diet... to make things suit your body.
Its just that FODMAP and RPAH seem to have differences: eg avodado safe in one and not in the other. I'll discuss both approaches with my dietician, whom I will respect for his/her knowledge and experience... its hard for me to relinquish trust to medics, but I will (with a careful eye over everything).
Re vegetarian: I don't eat eggs or meat, but I do eat fish (although right now I'm pretty sick of canned tuna!). I would consider red meat if my health was becoming compromised, but not a chook (chicken). Also, after organic-baked-beans recently made me violently ill, I keeping away from anything like them.
After recent negative endoscopy results, and feeling like I'd 'fallen through the medical net' whilst basically house-bound due to the many and extreme symptoms that seem to be shared by others with gluten and other intolerences... I decided to take things into my own hands and for 100% gluten, dairy and soy free. (I have already been meat and egg free for five years as they mess with my female hormones... think PMS 24/7...
Anyway, a week into gluten free I stocked up on fruit and vegies. I felt terrible. Then combined with the fantastic: information, linked-online-resources, advice and experiences on numerous threads from members of this forum re: Fructose Malabsorbtion (FM), low FODMAP diet and elimination diets (much of which seems to be spreading worldwide from the East Coast of Australia)... and combined with my food diary... I decided to do the FODMAP diet aswell. I know it is strongly advised to do this in conjunction with an informed dietician, but I felt both the gastro doctor and my GP had basically shut the door for referals etc.
However, yesterday, my gastro doctor phoned to say my biopsy had tested postive for lactose intolerence, and he has informed my GP to refer me to a dietician. Fab! He also said 'you sound anxious', and (possibly fortunately) I had just had one of my almost daily gut-wrenching vomits which leave me trembling and with a dripping nose. He really started to listen, and didn't treat me like a hyochondriac hippie. I raised FM, and he immediatelty said FODMAP, so he's in the loop... and says he knows a local dietician who could help with this. Double fab!
Just wanting to know, if like pre: blood tests and endoscopy for celiac diagnosis... should I not go on a LOW FODMAP diet pre seeing the dietician? Also, what tests are involved? (I believe it is something to do with breathe tests?)
Thanks to both of you. Yes, although my blood tests were positive (right genes etc), my doc was very clear to me that the endoscopy would be the real decider. Thus I believed his 'possible' diagnosis. However, in my research (inc and esp this forum) I have learnt a lot, including that yes I am in the same club! I went gluten and dairy free 48 hours ago (was planning to see a dietian, but, fed-up with the med system, decided I would just listen to my body and head! ). So, day-1 fell (crashingly) asleep in the afternoon, woke up fuzzy, but made it to a short walk to the post-box. Fell asleep again and woke with massive headache, but drank some Red Bull, as suggested by a member of this forum, and it worked a treat! Day-2 (inc ginger tea for breakfast, another suggestion from here) I feel much better and my sinuses are clearing. Should I start taking B12 and magnesium, or wait for a bit? Any advice welcome. Ta, tarni
Yes, the 'snaps' and 'double snaps' in our lives are pretty uncanny, but I think one can be kind of intuitive about people even across the 'net in a forum.
I decided last night to bypass a dietician (I'm just so fed up with the whole system), and as of today I'll just go 100% gluten, dairy, soy and more... free. I've picked up lots of shared information from this forum to help me along this journey, and I'm sure I'll have heaps of questions which I'll post under a fresh topic. See you (seeya... in Aussie speak ) there.