Coeliacs disease

Just wondering if there are other BB sufferers! Maybe we can talk about different gluten free products found or just a generel chat of support!

Caddie, that would be me :)

Are you yourself coeliac and/or other family members?

I am a coeliac or sillyyak.lol i was diagnosed in july this year. I joined the local society in wa and got heaps of info. Im actually feeling good atm as i was eating maccas fries and hashbrowns which was a huge no-no. Instead of falling asleep at 7pm im staying awake until 10pm.A huge thing for me. I reckon i have had it a long while.I was always going to the drs burntout and emotional and tired.But everytime it was low iron and no testing for anything else.It wasnt until i had a 4day episode at hospital with extreme pain of abdo and a follow up by gp and specialist i was diagnosed. I had a biopsy done. The thing that worried me was i have large lymphnodes swollen in my abdo.Numerous tests were done for lymphoma but because of no size change a biopsy hasnt been done.A waiting game is being done at the moment and a biopsy will be done early jan to check if ive improved with the coeliacs. Bit of rambling but what was your early diagnosis like?

Hi caddie,

I to have the bloody sillyyak's as well, i knew something was up 10 yrs ago, had the biopsy, to samll to detect back then. 4 years ago my mum got diagnosed with it and doc said for all us kids to get blood test, and I was the only one with it. Sometimes I am a little bit naughty, but I end up paying for it in the end, major headaches and really tired.

Well I thought I would put my story in for you to read about, good luck in Jan.

Hi Caddie I am not a coeliac but was suspected of it a few years ago. It seems my years of extreme wheat intolerance was caused by a tummy bug I picked up in Asia and was ultimately cured by going wheat free for about 2 years and gluten free for a further 12 months - bloody hard work so I sympathise :( DH is a bit gluten intolerant, so we still eat a relatively low gluten diet.

The best gluten-free product I have found is the San Remo GF pasta - it tastes JUST LIKE THE REAL STUFF! When I went off gluten I pretty well gave up pasta because I would rather go without than eat the awful rice stukk, but the San Remo pasta rocks. It is more expensive - about $3.50 for 250 grams, but REALLY worth it. HTH.

Caddie - I am so glad that you are feeling better. It can ages to get used to this diet so I think you have done really well. Maccas fries and hashies are a no -no... one thing I learnt, check out info yourself and if in doubt - don't!

I have been diagnosed for about 4 years now and basically all the health problems I had were, as it turned out, linked to coeliac. My villi apparently were so flattened he was amazed I wasn't sicker than I was. My long list includes! Daily headaches, sinus, tummy aches, ulcers, restless legs, being stressed about little things all the time. Low iron, getting colds/flus every second month, feeling tired, no energy, indgestion... that's all I can remember for the moment,

My doctor actually sent me for a camera down the throat as I was complaing of acid reflux. The specialist toild me he would take a biospy as well, just in case. Luckly he did as he called me 2 days later and told me I was a coeliac. The he got me blood tested as well and that came out postive.

I cannot believe the difference I felt in just a month after going on a gluten free diet.

We don't know which side of the family it comes from in my case - do you know? We haven't got Matthew tested yet either.

I too get stressed about the little things and more so after ingesting gluten! If i eat it i get tummy bloating and gas,upset stomach and general lethargy for days.I just got over a sinus infection hope its a one off.lol
My villi were bad too and they say if they havnt improved i will need steroids but i dont want to go down that path.I have a crapload of iron,calcium and b12 to take but naughty me hasnt. I also have osteopenia which i suppose is early osteoporosis if i dont fix it.I eat loads of cheese so hope it helps.
Millana is a fussy eater,very.Hoping its a stage.Seems to get sick more often too but doesnt look real ill. Just a wait and see game at the moment.

Naughty caddie! Take those vitamins!

I haven't been tested for it but I know I am gluten and yeast intolerant

After I changed what I ate, I've felt a WORLD of better - and I think it's the reason why we were able to conceive (after years of nothing).

I have a gluten free blog if you want to check it out - gluten free food, wheat free, yeast free - Sydney Australia. I love hunting for new things!! Taste testing is fun :D

Thanks tracey,have had a squiz! Pity you wernt in perth! We are backwards over here compared to sydney or melbourne. Many a time i have read posts that suggest restaurants and cafes. Not many here im afraid.

Hey Caddie, Just checking in to see how you are going? Been well?

I have been going great guns, had a completely gluten free christmas, thanks to my family. Matthew's 3rd birthday coming up and that will be gluten free too. Great stuff.

Not too bad nelbe i had another gastroscopy in jan.He said hed call me if it was bad obviously i have been a good girl because he didnt! Another checkup in april.
I got myself a sunbeam smartbake so i can now bake yummy gluten free bread.
I do have some funny symptoms twice now of hot flushes,feeling like im going to chuck and dizzyness. So its happened twice so next time will have to remember what i ate or drank.
I actually like finding new food and recipes to cook so its been ok.
If you need any ideas for glutn free party food i will check my recipe books.

Hiya Ladies,
Just stumbled on this thread - hope you are all still around to chat.
I was diagnosed last year, my Nanna had it (died of bowel cancer), my mum has WI and my kids are all negative (thankfully!)
Wondering about vitamins - do you take them, do you find them effective, or as my doctor told me - a complete waste of money because I don't absorb them anyway? I get terrible anemia and low-grade-depression (lack of B I think) and wondering if I should 'waste my money' again??

No they are def not! Your diet should be allowing the villi in your bowels to slowly heal and so they will begin to absorb nutrients. Dont always lsten to health experts.The best source of info is at the coeliacs yahoo groups.All day they are answering and giving helpful advice. The reason why your so tired is due to lack of vitamins! I know i am an expert at avoiding pills but honestly make you feel better.I was diagnosed last year round july and just had a bad attack in july again and was in hospital.
Do you have great recipes for a varied yummy diet.
We could start a thread in the cooking section just for us and to inform others too.

Thanks for the info - back to the horse-tablets then!!
I have a fantastic menu/recipe that lets you cook 7 recipes in one, and so you can freeze it and have 7 meals for one week. I'll post it in the recipe section. I'll just put down the wheat/pasta version, but us girls are tricky enough to change over the pasta's etc.(I will put in MY SUBSTITUTES)
"Most" recipes are fine just to substitute our flour/pasta. I have a busy day of housework, but will set aside half hour at lunch to write down some recipes...
BTW, did you put on weight or lose weight when you went GF?

I put on weight!! Like 10kgs. I got sick and skinny then healthy and fat! I am not large(a size 12) but when i was sick i wasnt fitting into clothes i hadnt for years.
But i was eating junk coeliac food,now im adopting a more healthy lifestyle.

Yes I would agree with caddie, vitamins are ver important to a coeliac. I hope that you guys stick a thread up in the cooking section - I haven't checked if you have yet.

caddie - am interested how you are going with the breadmaker and what bread mix you are using? I had been using the Orgran but I need to find something cheaper.

I also have put on weight, I was about a size 10, then found out I was coeliac, then got pregnant, had Matthew and have had a devil of a time getting the weight off ever since! I have a great diet too, have nothing too bad. Don't eat too much during the day, I think that is my problem.

Currently I am having a bout of bad luck, I keep getting sick and I cannot think of what it i. I am super sensitive so am thinking its cross contaimation. Matthew may have it too :( He is having some bad luck too and all signs point to it. Fingers crossed he is not.

I would love to know if you accidently gluten yourself, does anything work to make you feel better? I have been eating plain rice crakers but wondered if anyone else has a miracle cure?

OK i make my own bread from scratch in the coliacs approved machine.Its fab! will post it today for you.Basically made from rice flour.:D I need to clean my car first.
Apparently some people swear by a cabbage and celery type soup as its meant to be soothing and healing for the gut.I stick to crackers generally too!!!
I wonder about millana.Always complains of tiredness,bruises easily and whingy in general!
I go to have a ct scan on wed to check my stomach lymphnodes as they have been enlarged.
I am currently on a "diet" to lose these extra kilo's.Will be doing WW but going gluten free options.

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! :wall:

Happy for any advice!

Thanks,
Marg

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!!!!

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!

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

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.

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.

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!

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. :wall:

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..

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.

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!

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!

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:

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!

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!

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?

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.

Thanks Feeb, I'm going to go and check out the shop in Werribee today, it looks great

Sarebear - I'm the only one diagnosed with Coeliac. We think my brother may have it but he refuses to get tested. (he doesn't want to give anything up!)
Yes I do make two meals. My DH doesn't like my meals and he is a big meat eater. I guess if he wasn't so fussy we could eat the same but it just won't work with him.
My DS is 5 1/2 months old so I will be watching him when I introduce gluten into his diet.
I agree with you Caddie. I would have much preferred to have been diagnosed young. I got to eat all the good gear for 20 odd years!
Good luck with the shopping. I wish we had more places where I live:-(

Hi ladies

I have a 19 month old son, who is 76 cms tall and weighs 8 kg and has weighed 8 kg since he was 12 months old. The paed thinks he may have coeliacs. can someone tell me what the symptoms are please?

He eats really well and has been breastfeed, doesn't drink much cows milk but loves cheese, yoghurt and custard. He is also very active.

thank you for any advice xo

Hi bearymum!
The symptoms vary from person to person. Some may not even show any symptoms.
If you google Australian Coeliac Society they have a great website with heaps of info including symptoms and also how they test for the disease.
Symptoms include constipation, diarrhoea, flatulence, being tired, vitamin deficiency, weight gain/loss (can be either), stomach cramps, smelly stools.
I felt really lethargic and it felt like I was carrying a brick in my stomach - very uncomfortable.
Does your ds eat alot of gluten? Ie cereals, bread, pasta, wheat, rye, oats, barley?
Hope this helps. If you have any other questions, ask away!

Bearymum, the doctor had told me to watch out for diarrhoea particularly when I asked about my little boy. He said that he recommends that DS be tested when he is around 4 years old if he doesn't have any symptoms before then. Like bluesky said the symptoms can be so varied, I hope you get it sorted soon.

Bluesky, if you are looking for more variety, the gluten free shop that I went to (thanks Feeb) has an online store as well. I haven't looked at it properly but it might be worth checking out. I don't think I can put the link here but I can PM it to you if you like. Or if you google gluten free werribee you should 'absolutely' find it.

Things are going well here, I did join the coeliac society and that was really helpful, I still have lots of info to read from them. I found a local italian restaurant that does gluten free pizza and pasta, we rarely eat out but it's good to know.

I made gluten free bagels yesterday, not perfect but they taste better than the bread that I have tried so far. It took me about 3 hours to make 4 bagels but it was so worth it! I almost had a tanty in coles when I discovered all the good lollies have gluten in them, luckily Aldi wine gums are safe, so that crisis is over :) Phew.