Coeliacs disease

**MargOZ** · September 24th, 2008, 09:06 AM

Hi guys, just found this thread. I have been feeling really average this year with symptoms of severe bloating, nausea, extreme tiredeness, stomach pains, indigestion, bowel changes, joint pain and more than a little stressed! My usual GP has basically ignored it so saw a new GP recently and she mentioned it sounds like a gluten intolerance. She has suggested I eat only gluten-free foods for two weeks to see if there is a difference (this is day 3).

I was wondering, do you think she should have done some testing, rather than just have me cut gluten out for two weeks? I would have thought tests would have given me a more specific answer.

And how long do you think it should take for me to notice a difference? This is only day 3 of eating no gluten and I can't say I've noticed a big change yet, still feel pretty crap actually!

Happy for any advice!

Thanks,
Marg

**MissWingBat** · September 24th, 2008, 06:59 PM

HIya Marg,
I was actually diagnosed very quickly through one blood test -they can check your positive antibodies in regard to tolerating gluten, and will tell if you have coeliac disease. If the test is negative, you still might have a wheat/gluten intertolerance, like my mother. If it is positive, they will send you in for an endoscopy to see how much damage there is to your stomach lining.
All the symptoms sounds right though. And it takes longer than a few weeks to feel better - I am 1 1/2 years in and still have really bad weeks...
Keep us updated and good luck!!!!

**caddie** · September 25th, 2008, 08:33 AM

OMG that is so outdated. You dont eleminate something like gluten and expect to feel good in a couple of days.It has taken me months to feel better and even now i am not 100%. Some people can take 2yrs as that is how long it takes for your villi in your small bowel to heal. You need to see a gastroenterologist who will test your bloods for the coeliac gene,your blood levels(mine were out of wack seriously) and i had a colonoscopy and endoscopy. Some drs do not take this seriously and you will need to try and find a dr who will.Even if you are neg for the gene you can still have coeliacs. You may even have wheat intolerance which is completely different or irritable bowel. There are lots of different diseases for the dr to consider. Number 1 rule from everyone i have spoken to say dont eleminate gluten as when you find a dr who will test correctly it will be an abnormal reading. I have weird things happen to me quite often related to bowels and if you do have coeliacs unfortunatly you are likey to be supersensative in the stomach/bowels to other things. Preservatives and the like as well!

**MargOZ** · September 25th, 2008, 10:49 AM

Thanks so much for the replies.

I did just get a test result back today from my previous Dr who reluctantly ordered a gluten blood test last time I saw him a couple of months ago. I didn't hear anything back from him or his clinic and in the meantime decided to find another GP. But then decided to ring the old clinic today and the test result for both gliadin and transglutaminase was 4. They say it should be less than 20. I know you can test negative and still have a gluten problem - so I have to say this is all extremely confusing!!!

Actually I wouldn't mind getting an endoscopy done just to see if there is any damage but then I've read that I would need to start eating gluten again first before getting any testing done.

And considering how sick I've been for quite a while now, I did wonder how much difference there would be in me cutting out gluten for just two weeks! As you've mentioned, considering how long I've been unwell, I assume it will take just as long to start feeling well again.

Well, I guess at the moment I'll stick to the two gluten-free weeks and then go back to my GP and see what she has to say. Would just like to feel well again!

Thanks again,
Marg

**Michelle_k** · January 20th, 2009, 01:32 PM

hi,

im GI as well. But i have been a naughty girl and still having a sandwich once or twice a week. Theres no point in trying to have a nice sandwich with gf bread. Its friggin useless.
But i def agree with the san remo pasta.
My cousin sent me a recipe for a gf custard sponge. Im more than happy to share it.

I have found that coles has a greater range of gf products than woolies.

**Apes23** · April 30th, 2009, 03:00 PM

Hi, I have CD here too. Wow it's becoming alot more common these days than it was 20 odd years ago!
I was diagnosed when I was 2 years old so i've basically been living with it all my life.
I went off the diet when I was 15 years old because being a typical teenager I thought nothing was wrong. So I ate 'normal' food and got a biopsy done to see if I still had the disease. Turns out the 'Villi' of the small intestine was a little damaged and was advised to go back on the boring ole gluten-free diet.
Since having my son he has been tested (blood-test) for it and thankfully it came back negative.

Yes I agree the gluten free bread isn't the best, I have to toast it, but there are alot more products available now.

Hope your all well and sticking to the diet ok. I know it does get very hard.

**caddie** · April 30th, 2009, 05:27 PM

I am still here.. I have to go have another ct scan next month. My lymphnodes have been enlarged since diagnosis and they have not gotten smaller or bigger? So another one next month.
Diet pretty good. Im not totally perfect..
I was going to ask my specialist next month how coeliacs will affect a new baby? I found out i had it after ruby. She was small (5.5pounds) and i did have some bleeding in the placenta early pregnancy.I wonder if this was the coeliacs?
Did you have to take extra meds? I just wonder because my folate was pratically 0 last blood test and would hate to take meds that have no affect. Even though im good with my diet my body tends to lack a great deal of vitamins and minerals.
ta!

**takingtime** · December 5th, 2009, 04:18 PM

Hi! Just wondering if anyone is still around?

I have been diagnosed Coeliac for two years and lucky me also has type 1 diabetes which is often found in people with Coeliac.

I have said to people before, I can handle having one or the other but not both!

Alot of gluten free products are high in carbs, which isn't so good for my diabetes.

**caddie** · December 8th, 2009, 01:35 PM

Totally here you!! Ive been diagnosed for 2.5yrs and since that time i have popped on 10kgs and then lost it then gained and more...Such a roller coaster...
Its sux, and no-one really understands the food we miss out on and the food they take for granted..

**takingtime** · December 8th, 2009, 06:07 PM

Yep same here caddie. I really miss fresh bread. I don't have anyone IRL to talk to with Coeliac so it's nice to be able to talk on here about it.

**SareBear** · February 18th, 2010, 05:33 PM

I've just gotten back from the doctor and got my biopsy results, I too have coeliac. I really didn't expect it to come back positive!

I have a referral to a dietitian but I guess the gluten free diet starts now... I'm also vegetarian.

I haven't really researched much yet, I was totally in denial. So far though the things that I'm freaking out over are milo and vegemite.

I hope you girls are still around!

**caddie** · February 18th, 2010, 05:56 PM

Yes still here! sorry to hear you have been diagnosed. Its such a pain this disease but i am sure once you change your diet you will be alot better. Just remember to take your vitamins and minerals. Esp calcium!
I have just been diagnosed with arthritis in my spine. So another disease to deal with.
With coeliacs u can get other auto immune diseases. It usually goes hand in hand so stay aware of your body and what u feel!

**takingtime** · February 18th, 2010, 07:27 PM

Hey Sarebear
I'm still around too. Sorry to hear the results.
I too am vegetarian so I understand completely. Like Caddie said make sure you take your vitamins.
I miss my vegemite and Milo too and I hate to break it to you but you will never find gf bread that tastes normal! :-(
I also have type 1 diabetes which is another autoimmune disease. Another one to look out for is thyroid problems.
It is a big shock to the system and you will probably go through an angry stage when it sinks in but we are here so you can vent away. I especially find it hard eating out.
Definately talk to a dietician and join the Coeliac Society. They have a great magazine they send out and an ingredients book that tells you what is gf.
Alot of gf foods are pretty comparable to the "real thing" now.
Once you know what to look for it will become easier and it's a massive shock just how many products actually contain gluten!
Good luck Hun and talk soon.

Caddie- wow sorry to hear about the arthritis. Hope you aren't in too much pain. :hugs:

**maybe baby** · February 18th, 2010, 10:11 PM

Good luck to everyone with this - I was diagnosed with the disease at 20 months old so mid-70s! For me, it has not been that hard. Never eaten normal bread so don't miss it and we eat at home a lot. AM alwasy around for questions!

**caddie** · February 19th, 2010, 08:18 AM

I actually would have prefferred to be diagnosed when young. Being diagnosed later i have had a taste of all the good things in life and now its like a game of temptation but never being able to win!

**SareBear** · February 19th, 2010, 09:04 AM

Thanks for tips! I'm sorry to hear caddie and bluesky that you have other issues to deal with as well, that's tough.

We had pizza last night for dinner, the bye bye gluten dinner. I don't even like pizza that much but the thought of not being able to have it (from the local pizza shop anyway) made me want it. So today is a new start. I seriously could not find anything in the house for breakfast, it was harder than I thought! There is a gluten free shop nearby so I'm going to go there later today and have a look around. I'm looking forward to seeing the dietician and getting prepared.

The Coeliac Society sounds like a good idea, I'll look in to that today too.

Are you the only one in your families that have to eat gluten free? Do you find you have to cook extra very often, like making two lots of pasta? or do they eat what you eat?

**feeb** · February 19th, 2010, 09:15 AM

Sarebear sorry to hear you have coeliacs a friend has it and there a shop in Werribee that sell gluten free only and in Seddon the olive oil shop has gluten free pasta and sauces lady is really helpful there as I made a hamper for friends birthday.