Coeliacs disease

[caddie]

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!

[nellbe]

Caddie, that would be me

Are you yourself coeliac and/or other family members?

[caddie]

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?

[littleangels*]

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.

[Roryrory]

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.

[nellbe]

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.

[caddie]

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.

[nellbe]

Naughty caddie! Take those vitamins!

[tracey*]

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

[caddie]

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.

[nellbe]

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.

[caddie]

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.

[MissWingBat]

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??

[caddie]

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.

[MissWingBat]

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?

[caddie]

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.

[takingtime]

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]

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!