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#721 Di2011

 
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Posted 03 May 2012 - 04:01 AM

I consider myself super/super sensitive to gluten. I've not been eating out free since Oct11 because of so much problems. I've only started picking up a glass of wine every now and again in the past two weeks. I am strict.
Really strict. It has made an AMAZING difference in my DH (dermatitis herpetiformis).

I have 100% faith in Freedom Foods oats containing cereal. It is the only brand that I would stake any real claim in. Freedom foods and thai produced rice noodles are the only "production" foods I eat (since Oct 2011).

I have absolutely NO AFFILIATION with the company but it is absolutely my only food producer I'd trial at the moment.
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#722 Saz

 
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Posted 03 May 2012 - 04:06 AM

I find that kind of interesting.

I'm not a sensitive Coeliac, I used to be able to have a sandwich or two on normal bread most weeks and sometimes something else as well. In addition I didn't pay much attention to what was in spreads or sauces. However from what I've read, it is a bit like smoking. Just because it doesn't effect you today doesn't mean you won't get sick in the future. In this way coeliac is slightly different other gluten 'allergies'.

So I guess my point is I wouldn't really be confident eating the oats since some people react and others don't. Having said that the minute the figure out how to test if some people with Coeliac can have them safely, I'm first in line.

Although I imagine by the time it got proved, I will have gone without so long I just won't care.
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#723 anabananakins

 
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Posted 03 May 2012 - 11:35 AM

As far as I have read the only reason we can't have oats is because generally they are co-grown and co stored with wheat. But if you find oats (like freedom) that are grown and stored separately then they should be fine, having said that - the coeliac society says no to all oats.
Also - you the gluten free oats that you get are like 8 or 9 dollars for 500g - WTF!! I'd rather go without - I've got the kids on rice porridge and sweet polenta for a hot breakfast. WAY cheaper!



Beebs, it was really funny, I had porridge on the list of things I was majorly mourning and then one day I saw those bob red mill (?) ones from the US on the shelf in Thomas Dux. I looked at the price - $14!!! and in an instant any desire I had for porridge vanished forevermore. I enjoyed it but it really wasn't work that much money. Talk about (not) putting your money where your mouth is :-)

I'm not a diagnosed celiac but I'm a sensitive-to-an-unseen-crumb gluten intolerant and I've never touched oats since. But I need to keep my carbs low so it helps me to put them in the 'do not touch' catagory, I tell myself that they are all contaminated (or way too expensive). I wish I could be as strict with myself with corn (chips and tacos), my waistline does not need them...
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#724 beebs

 
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Posted 03 May 2012 - 02:10 PM

Beebs, it was really funny, I had porridge on the list of things I was majorly mourning and then one day I saw those bob red mill (?) ones from the US on the shelf in Thomas Dux. I looked at the price - $14!!! and in an instant any desire I had for porridge vanished forevermore. I enjoyed it but it really wasn't work that much money. Talk about (not) putting your money where your mouth is :-)

I'm not a diagnosed celiac but I'm a sensitive-to-an-unseen-crumb gluten intolerant and I've never touched oats since. But I need to keep my carbs low so it helps me to put them in the 'do not touch' catagory, I tell myself that they are all contaminated (or way too expensive). I wish I could be as strict with myself with corn (chips and tacos), my waistline does not need them...


I'm undiagnosed too - but I know its not intolerance, do you think maybe you were just one of the 15% false negatives? I never trust those tests anymore, I only had the bloods done, went gluten free with the knowledge that I was going to do a challenge - I was really, really looking forward to it, my first stop KFC chips with gravy and chicken salt - haha! Then ate gluten about 6 weeks later and ended up in hospital!

Yeah - same= porridge loses its sparkle when it costs that much - the whole point of it is its a cheap staple!
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#725 Kjas

 
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Posted 03 May 2012 - 05:15 PM

I am a super senstive one, sadly.

But the reaction I had to bobs red mill oats was ridiculous. I've had lesser reactions from using CC'ed toasters!

I tested the freedom foods crunchola the other day, and I am happy to report no gluten reaction what so ever (I did have a small reaction to oats - I guess that means I'm an oat intolerant one, I'll test again to make sure). The raspberry flavour is really nice.
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#726 Di2011

 
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Posted 04 May 2012 - 02:41 AM

I can't handle sals (salicylates) so the berry ones aren't an option for me. I probably shouldn't even have the apple & cinnamon (due to higher sals in any dried fruit). Since my DH appears to flare with accummulative sals I only have the Crunchola probably once a week, twice at most. It seems to be still working for me whilst my DH is greatly improving ((finally!!!!!!!!!!))
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#727 Di2011

 
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Posted 09 May 2012 - 12:49 AM

Do you know of any DH experienced dermatologists in Canberra or Sydney (Australia)?
I live in Canberra but would go to any in the region including up to Sydney.
Ta

BTW I've posted this in "doctors" forum also - no need to reply to both as I'll check them both.
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#728 anabananakins

 
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Posted 11 May 2012 - 02:56 PM

I'm undiagnosed too - but I know its not intolerance, do you think maybe you were just one of the 15% false negatives? I never trust those tests anymore, I only had the bloods done, went gluten free with the knowledge that I was going to do a challenge - I was really, really looking forward to it, my first stop KFC chips with gravy and chicken salt - haha! Then ate gluten about 6 weeks later and ended up in hospital!

Yeah - same= porridge loses its sparkle when it costs that much - the whole point of it is its a cheap staple!


I've had doctors wonder about that Beebs, when I describe my long term symptoms and how they cleared up, it's puzzling and quite a few have said they'd be sure I was celiac if it weren't for the negatives (and some have pointed out the false negatives too). I gave it the best shot I could though, 4 months of eating masses of gluten before I was tested and they did the gene testing too and I didn't have the ones they look for so that was that, really. I tell people that medical science is still catching up as no one denies how much I improved gluten free, I don't get any grief over being undiagnosed. Being of english/irish descent I was surpised I didn't even have the genes, I don't know enough about the gene side of things to know if the ones I do have are perhaps associated with the neuro symptoms they are still researching. The reason I went strictly gluten free was because I'd been failing the romberg test for ages and when I started reading up on gluten ataxia it really scared me. My GP did some neuro tests on me before I went gluten free and so I could prove to her that I'd gotten better in that regard (the stomach stuff was more subjective and I think harder for her to accept with cause/effect). Anyway, as an australian who had doctors pretty aware of celiac and gluten intolerance and who still didn't get a diagnosis (but doesn't get any grief about being gluten free), my heart goes out to people whose doctors aren't even remotely aware.

LOl about the KFC. I was regretting yesterday that I didn't have a cheese burger in my final pigging out weekend!

ETA Diandliam, sorry, I don't. But glad to hear your DH is improving!! Also Freedom foods have been on special in woolies this week, I thought of you all when I saw the packets of cereal! (I resisted though as I'm trying to stay low carb for weight loss and my cereal-love is Chex from the US and I think it's better if I keep my cereal supplies accross the pacific and only eat what I can eat there or bring home :-)
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#729 Saz

 
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Posted 11 May 2012 - 04:07 PM

For those of you who got negative results on the blood tests, did you also fail an edoscopy? Many years ago they used to say that the endoscopy was the truiest way to diagnose Coeliac. The technology incovled in testing has greatly improved but I heard of people who test negative to the blood test but positive to the endoscopy. It will only diagnose Coeliac, not other types of gluten itolerance.

Hope it doesn't like I'm having a go at anyone, just making a suggestion. Doctors can sometimes be a bit useless and don't always suggest all the options.
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#730 anabananakins

 
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Posted 11 May 2012 - 09:39 PM

Saz, I didn't have one. I thought about insisting on it (I'd been reading/posting here before my testing) but by that point I was desperate to get off the gluten again and I don't think it would've been easy to get a referral for one and was tired of arguing with doctors. When my gene testing came back negative that was it, really. I'd already indicated to my doctor that I planned to go gluten free whatever the outcome and she supported that. Had I had the gene(s) she would've ordered the endoscopy, but it wasn't necessary for my compliance. I knew gluten was horrible for me and I resolved to behave as if I had celiac disease, an official diagnosis (or not) wouldn't change that. I was over blood tests, doctors and waiting and ready to move on with my life.
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#731 Saz

 
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Posted 12 May 2012 - 07:46 AM

Can definetly understand that. If not eating gluten makes you well then it doesn't matter if it is official or not.

I was really to young to understand when I was diagnosed what it really meant. I think though for me if I was going through diagnoses now, I would want something to say the allergy was postive (whatever it was). Even if not having something meant I felt better, I would still find it hard to acept without a "name". Although for me this is mostly from an experience I've had dealing with another condition, nothing to do with allergy.

I guess for me been able to name something is my way of coping.

This probably doesn't make much sense. As I said if avoiding gluten makes you well then that's the best thing.
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#732 mushroom

 
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Posted 12 May 2012 - 09:00 AM

I was never tested at all. For me, knowing that I had all the symptoms (Including other AI conditions), took the cure and got better means to me that I have celiac. To heck with their darned tests that they never thought to offer me. :P
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#733 anabananakins

 
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Posted 12 May 2012 - 03:29 PM

Shroomie, it sucks that no one ever thought to offer you the tests, could've saved you so much pain :(

Saz, I totally get needing a name for it. I think had I not been reading/posting here during the months I was getting ready to go gluten free, I wouldn't have been successful, I wouldn't have stuck to it. There was a lot of encouragment to accept that the tests weren't always accurate and that a good trial was the best way to go. Once I felt better, I could stick with it. I wish I had a diagnosis so I could force my mother to get tested. But I have worn her down over the years since my answer to all the world's evils is "gluten" and she's really lowered her intake and feels much better for it. But she won't go gluten free and I haven't convinced her to take the test either.

It must be a really different experience going gluten free as a child or younger adult. I was 33 and by that age, my friends and I were all moaning all the time about how old and crap we felt, so finding something that made me feel great excited everyone (whereas when I was 20 and felt like crap, they didn't understand!).
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#734 rosetapper23

 
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Posted 12 May 2012 - 08:31 PM

Happy Mum's Day to all of you wonderful mothers Down Under! I know that you're celebrating your Mother's Day today, while we in the U.S. will be doing so tomorrow.

My daughter, who lives in Sydney, sent me some of your lovely Butterfingers shortbread cookies and Haigh's chocolates, so I'm thoroughly enjoying my entire weekend! You have no idea how lucky you are do have such heavenly gluten-free products. I mean, gluten-free shortbread made of real butter??! Just about everything here that is a baked, gluten-free product is filled with chemicals and hydrogenated fats.

I hope you're all enjoying a fabulous day!!
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#735 Saz

 
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Posted 13 May 2012 - 02:47 AM


It must be a really different experience going gluten free as a child or younger adult. I was 33 and by that age, my friends and I were all moaning all the time about how old and crap we felt, so finding something that made me feel great excited everyone (whereas when I was 20 and felt like crap, they didn't understand!).


Yea, in some ways I wish I hadn't been diagnosed until I was older. I'd always been alowed to cheat very very rare ocassions, I was never sensitive. Anyway when I got to about 15 I started to wonder what a lot of things tasted like, so I started cheating regularly. This was about 10 years ago before a lot of the nice or replacements foods we have now. Sometimes I'd go overboard and get ill but proberley due to been a bit immature I would just be good for week instead of all the time.

If it makes you feel any better I'm almost 25 and feel old and crap, especially when I hear teenagers speaking. I was never part of the "in" crowd but was hoping to at least make it to 30 before I felt "old".
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