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Australians And New Zealanders Hellooooooo :)


Aussie Peg

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whiterabbit Newbie

Hi everyone :-)

I'm a newbie kiwi on here and also new to coeliac disease so still very much finding my way and still wondering, 'is this what I've got?' At the end of 2007 I had a positive blood test for coeliac :

Tissue Transglutaminase IgA 204 - Ref range [0 - 20]

and also a Positive Anti-endomysial [igA]

and the blood test read:

'These results support a diagnosis of coeliac disease'

I also had a biopsy done early January 2008 but there wasn't enough damage to suggest it was coeliac disease but my specialist said I had 'latent coeliac disease' meaning that if I didn't have it then I was going to get it.

In March this year I got a really bad chest infection which is something I don't get and went from being able to run four times a week (was training for a half marathon in June) to being totally wiped out not to mention other complications. Nearly 10 days after getting really sick I experienced reflux really bad for the first time. It was horrible. I didn't know what was wrong with me. I couldn't even stand the sight of food going near my mouth because I just felt so nauesous and got these horrible chills and then diahorrea would finally set in. I couldn't really eat and was at the stage of being afraid to eat. I'm now on a tablet to help with the reflux and I have started going gluten free although since being sick I've like lost weight which I don't really want to but because my system has been in such a tiz its still finding its way.

I would be really interested to know whether other people have experienced similar things. I mean, is this normal? The thing was, about a week before getting sick I had actually gone gluten free because I thought it would help my breathing and also I've had diahorrea since Xmas time but I thought it was simply too much Xmas cake. The other thing I get is really bad mouth ulcers. I have oral lichen planus and right now these are playing havoc with my system. I get ear ache that comes and goes through the day shifting from one ear to another but the doctor can't see any inflammation there.

I'm really hoping everything will settle down after a while and has this been the case for others. If so, how long does it take before your body stops wanting to purge itself of the gluten and any suggestions and ideas would be much appreciated. There are times that I think my body is simply fighting so hard that it doesn't know which fire to put out first. It's been a bit of an emotional roller coaster right now but just knowing your not alone at least makes you think you're not completely going bonkers! lol

Thanks for listening guys and I hope to make some great friends on here.

Cheers

Angie


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  • Replies 997
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amber Explorer

Hi Whiterabbit (Angie),

Firstly we are not doctors here so it would be best to go and see your doctor or gastroenterologist for advice first.

It sounds like you should get yourself onto a STRICT gluten free diet. If you eliminate totally all gluten from your diet then you should start to see an improvement in weeks or months. It could take some time though to get back to normal though as you may have low iron levels etc. which need time to get back to normal. Your blood test results were high and do strongly indicate coeliac disease. They said there was only minor damage but from my understanding some people can have severe symptoms and minor damage and others have little or no symptoms and severe damage. We were told this by an expert at a gluten free conference.

I know my sister had reflux before she found out she was coeliac.

Where do you live Angie? I would suggest that you go and see a dietician that has a special interest in coeliac disease also. If you live in Melbourne I can give you the name of some that you could go to.

If you have any other questions feel free to ask.

mushroom Proficient

Hi, Whiterabbit! 'Nother Kiwi here.

I am a bit surprised your doc did not tell you to cut out gluten right away. All the symptoms you describe can come from gluten consumption so you really must eliminate it in all its forms. It is hard to do at first because it hides so many places, but you will get the hang of it after a while.

Detoxing from gluten takes a while; you will normally feel quite a bit better after a couple of weeks, but everyone is different. The quickest way to feel better is to eat very simply at first, fish, rice, fruit, vegetables--shop around the outside of the supermarket. You want to eat things that are easy to digest because your digestive system is in an uproar. You might also find you have some problems with dairy at first. Cut it out for a few days and then try some yogurt and hard cheese and see how you handle it. Good luck on your gluten free journey. You can do this.

whiterabbit Newbie

[quote name='amber' date='May 4

I know my sister had reflux before she found out she was coeliac.

Where do you live Angie? I would suggest that you go and see a dietician that has a special interest in coeliac disease also. If you live in Melbourne I can give you the name of some that you could go to.

If you have any other questions feel free to ask.

/quote]

Hi amber

That's interesting about your sister having reflux first before she found out about her coeliac. I am definitely going to adhere to a strict gluten free diet as living with the side effects are just not worth it. The biggest change for me in my diet will be my lunchtime meals. I'm so use to making a sandwich and satisfying that quick fix without having to go to so much trouble as well.

Breakfast I can just switch to gluten-free cereal and even dinner is not really much change but it will be all those little hidden gluten nasties that I'm still trying to get my head around.

I'm in Christchurch but been to Melbourne numerous times and love it! A great city.

At the moment the real pain I'm enduring is now with these mouth ulcers. At last I've been able to eat three meals a day albeit not huge servings but at least consume most of it and without the nauseousness and running to the toilet straight afterwards. The tablet I'm on for a month to stop any reflux and if there is an ulcer there to repair it but it is difficult to know this first month whether I'm able to eat the food because it doesn't contain gluten or simply the reflux but either way, I'm still going to go gluten free. It would just be nice to know whether there was something more going on with the intestinal area but I've already had one gastroscopy and I really don't feel like doing that again. I think what has happened, my body has slowly been building up to this complete break-down, purging of gluten and when I got sick with a bad chest infection that was its flood gates and thought hey, she isn't well now so why not play merry havoc with her system and upset the whole apple cart lol.

I can't wait till I'm feeling a whole heck of a lot better. The last time I got so sick like this it took me five months to recover. It was a long slow process and my immune system took such a hammering. But hopefully I'm moving in the right direction.

Tell me amber, do you suffer from any other auto immune conditions and how are you now going gluten free? Can I ask you what your health is like in general? I'm just curious to know how people feel after going gluten-free and what the biggest changes that they have noticed since cutting out gluten or any other food type allergies. Oh one other thing, how would I know if I am dairy intolerant? I hope I'm not but I'm just wondering what sort of role dairy plays with our immune systems too.

Thanks for listening :-)

Angie

whiterabbit Newbie
Hi, Whiterabbit! 'Nother Kiwi here.

I am a bit surprised your doc did not tell you to cut out gluten right away. All the symptoms you describe can come from gluten consumption so you really must eliminate it in all its forms. It is hard to do at first because it hides so many places, but you will get the hang of it after a while.

Detoxing from gluten takes a while; you will normally feel quite a bit better after a couple of weeks, but everyone is different. The quickest way to feel better is to eat very simply at first, fish, rice, fruit, vegetables--shop around the outside of the supermarket. You want to eat things that are easy to digest because your digestive system is in an uproar. You might also find you have some problems with dairy at first. Cut it out for a few days and then try some yogurt and hard cheese and see how you handle it. Good luck on your gluten free journey. You can do this.

Hi mushroom :-)

Nice to meet a fellow Cantabrian ~ really appreciate your words of support and looking forward to feeling better thats for sure. lol

Yes, it was strange that my doctor did not advise me to cut out the gluten but oh well, that decision has now been forced upon me and I am certainly going to cut out gluten completely.

Tell me mushroom, how do you find your own health these days by I see, cutting out a few things. Have things settled down for you? Be interested to know the type of symptons that you experienced just to compare and just generally interested.

Thanks mushroon,

cheers

Angie

amber Explorer

Hi amber

That's interesting about your sister having reflux first before she found out about her coeliac. I am definitely going to adhere to a strict gluten free diet as living with the side effects are just not worth it. The biggest change for me in my diet will be my lunchtime meals. I'm so use to making a sandwich and satisfying that quick fix without having to go to so much trouble as well.

Breakfast I can just switch to gluten-free cereal and even dinner is not really much change but it will be all those little hidden gluten nasties that I'm still trying to get my head around.

I'm in Christchurch but been to Melbourne numerous times and love it! A great city.

At the moment the real pain I'm enduring is now with these mouth ulcers. At last I've been able to eat three meals a day albeit not huge servings but at least consume most of it and without the nauseousness and running to the toilet straight afterwards. The tablet I'm on for a month to stop any reflux and if there is an ulcer there to repair it but it is difficult to know this first month whether I'm able to eat the food because it doesn't contain gluten or simply the reflux but either way, I'm still going to go gluten free. It would just be nice to know whether there was something more going on with the intestinal area but I've already had one gastroscopy and I really don't feel like doing that again. I think what has happened, my body has slowly been building up to this complete break-down, purging of gluten and when I got sick with a bad chest infection that was its flood gates and thought hey, she isn't well now so why not play merry havoc with her system and upset the whole apple cart lol.

I can't wait till I'm feeling a whole heck of a lot better. The last time I got so sick like this it took me five months to recover. It was a long slow process and my immune system took such a hammering. But hopefully I'm moving in the right direction.

Tell me amber, do you suffer from any other auto immune conditions and how are you now going gluten free? Can I ask you what your health is like in general? I'm just curious to know how people feel after going gluten-free and what the biggest changes that they have noticed since cutting out gluten or any other food type allergies. Oh one other thing, how would I know if I am dairy intolerant? I hope I'm not but I'm just wondering what sort of role dairy plays with our immune systems too.

Thanks for listening :-)

Angie

  • 2 weeks later...
mushroom Proficient
Hi mushroom :-)

Nice to meet a fellow Cantabrian ~ really appreciate your words of support and looking forward to feeling better thats for sure. lol

Yes, it was strange that my doctor did not advise me to cut out the gluten but oh well, that decision has now been forced upon me and I am certainly going to cut out gluten completely.

Tell me mushroom, how do you find your own health these days by I see, cutting out a few things. Have things settled down for you? Be interested to know the type of symptons that you experienced just to compare and just generally interested.

Thanks mushroon,

cheers

Angie

I am sorry I failed to respond to you before, Angie. Completely missed your post. I am glad you decided to go gluten free anyway; how's it going?

My own health these days, gluten-wise, is pretty good. I used to mainly have terrible gas, bloating, diarrhea, and of course the psoriasis and rheumatoid arthritis that came on about five years ago. I think because it was "just" the gastro symptoms that I was able to tolerate it for so long before doing something about it. It was only when I started reading about RA that I decided it could have something to do with gluten, and gave it up. Just as well I did. Unfortunately, going gluten free did not affect the psoriasis and arthritis, and I have been through ALL the RA medications until I'm down to the TNF inhibitors; so I am currently taking Humira (adalimumab) injections every two weeks for the last four months which do seem to be helping. I seem to get soyed more often than I get glutened;

soy gives me terrible itching and a red rash like scarlet fever with no pimples. I have always been able to do all dairy (i.e., yogurt, cheese, sour cream, butter) except lactose, and now I can tolerate milk in cappuccinos with no problem. One of these days I am going to get really brave and try a taste of ice cream, which is what I really crave. We are heading to Nevada next month and I am going to look for the coconut milk ice cream, and I understand they even have goat's milk ice cream :D:D

I found so many of the gluten-free products substituted soy, and since I was reading the labels for gluten only at that stage I did not notice it at first, and then became extremely sensitive to soy so that I can't even handle the soya lecithin in chocolate :( And then the nightshades I gave up reluctantly in an effort to mediate the inflammation from my arthritis (my CRP was way up to 88 when it should be below 5). I did not get it down until I started taking the Humira injections and now it is under 5 for the first time in 6 years. Nightshades are supposed to be inflammation-inducing, and I did eat a lot of them (my favourite dish was ratatouillle!)

But I have found out that I was very vitamin deficient and have ended up with apparent ostoeporosis despite taking Vitamin D and calcium. You really should get the following levels checked: Vitamins D, B12, folate, and calcium, magnesium, zinc (and here in New Zealand selenium). I have been taking Metagenics Mega B Complex which contains all the B vitamins, plus Thompsons Multi-Minerals, along with some extra Blackmores folate because I was so low. and B12 injections pnce a month because I do not tolerate the sublinguals for some reason, along with 50,000 units of D3 once a month. So I have ended up with a wedge compression fracture in my spine (because of a fall and the osteoporosis), and cellulitis (because of a skin tear that became infected and now I can't fight it off very well because Humira suppresses my immune system. It's all a matter of trying to keep things in balance and weigh the good vs. the bad

Hope things are going well for you and that you are adapting to the diet. I just went to a gluten free expo this arvo at Addington Raceway, and found new companies:

Havoc bacon, sausage and ham; Golden Goose which are trying to break into the Takeaways market )good fish & chips); and of course the usual like Bin Inn, Totally Gluten Free Bakery, the Gingerbread Man , Simple, Orgran and Basco. If you don't know about any of these products just let me know. Maybe we can get together for a cup of coffee--I live in Diamond Harbour; where are you from?


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  • 3 weeks later...
amber Explorer

Coles homebrand lollies are now mostly gluten free. You will see on the label 'contains wheat' but that is because of the glucose syrup. In case some of the newer coeliacs don't know glucose syrup is gluten free as it has been tested 'no detectable gluten'.

Mission Brand wraps have a corn tortilla which is in Coles near the mexican food. Not sure if in all stores. They don't taste all that exciting but if you heat them up in a pan/microwave they actually do wrap. Small in size though.

  • 2 months later...
tygwyn Newbie

Hi Everyone!

Just wanted to introduce myself as a Sydneysider :) My doctor believes I'm gluten intolerant so I've recently started down this path... still learning big time!

Looking forward to learning loads here.

Rach xxxx

  • 2 weeks later...
WideAwake Rookie

Yet another Cantabrian here, wondering where our winter has gone.

I just joined this forum, have self diagnosed and am feeling so much better. When I was eating gluten I was perpetually tired, brain foggy and had very high anxiety (almost to a paranoia level). After suffering for months from Dyshidrotic Eczema I read about how someone went off gluten and it helped. Even the next day with no gluten I felt a lot better. I went from feeling sleepy almost all day (and especially after lunch) to being very wide awake. My anxiety disappeared overnight too, and I don't have to make so many trips to the loo.

I was diagnosed with IBS when I was a teen but gluten has never ever been mentioned. I found out recently that my grandmother rarely if ever ate gluten, and she did this without knowing anything about gluten as far as we know. I found that very very interesting.

I also have a subclinical underactive thyroid (but yet I have nodules in my neck), diabetes and now this. Makes thinking about what to eat a big hassle. I have been putting on weight no matter what I do, thanks to my thryoid, even with exercising and eating pretty healthily. I am putting off going to the doctor cause I have put on so much weight lately. Not sure how well he would respond to me saying that I think I am gluten intolerant too LOL

Anyway that is a lot of info about me, hope to get to know some of you more.

tygwyn Newbie
Yet another Cantabrian here, wondering where our winter has gone.

I just joined this forum, have self diagnosed and am feeling so much better. When I was eating gluten I was perpetually tired, brain foggy and had very high anxiety (almost to a paranoia level). After suffering for months from Dyshidrotic Eczema I read about how someone went off gluten and it helped. Even the next day with no gluten I felt a lot better. I went from feeling sleepy almost all day (and especially after lunch) to being very wide awake. My anxiety disappeared overnight too, and I don't have to make so many trips to the loo.

I was diagnosed with IBS when I was a teen but gluten has never ever been mentioned. I found out recently that my grandmother rarely if ever ate gluten, and she did this without knowing anything about gluten as far as we know. I found that very very interesting.

I also have a subclinical underactive thyroid (but yet I have nodules in my neck), diabetes and now this. Makes thinking about what to eat a big hassle. I have been putting on weight no matter what I do, thanks to my thryoid, even with exercising and eating pretty healthily. I am putting off going to the doctor cause I have put on so much weight lately. Not sure how well he would respond to me saying that I think I am gluten intolerant too LOL

Anyway that is a lot of info about me, hope to get to know some of you more.

Welcome to the Forum!

When you say you are subclinical hypothyroid, are you being treated for it? How big are the lumps on your thyroid? Have you had an ultrasound or an FNA (fine need aspiration). I had a massive multi nodular goiter up until 3 years ago... I now have no thyroid and am still struggling to find my sweet spot of medication.

I've also been diagnosed as being Inuslin Resistant but my doctor believes that when we get the gluten intolerance and thyroid in check that will be corrected... heres hoping :)

WideAwake Rookie
Welcome to the Forum!

When you say you are subclinical hypothyroid, are you being treated for it? How big are the lumps on your thyroid? Have you had an ultrasound or an FNA (fine need aspiration). I had a massive multi nodular goiter up until 3 years ago... I now have no thyroid and am still struggling to find my sweet spot of medication.

I've also been diagnosed as being Inuslin Resistant but my doctor believes that when we get the gluten intolerance and thyroid in check that will be corrected... heres hoping :)

No treatment, just blood tests every 3 months with my diabetes tests.

I can definitely feel them, they feel huge to me of course. You can just see it on my neck (but I am ummmm not skinny LOL ) My doc could definitely feel them too, but my tests all seemed to come back fine. I did have an ultrasound, which showed I had quite a few nodules but none seemed cancerous. My voice is often hoarse.

I too am hoping by going gluten free the other problems will settle down a lot more. My mum has the same thyroid issues too but is also subclinical. Thankfully she doesn't have the weight problems I have.

mushroom Proficient
No treatment, just blood tests every 3 months with my diabetes tests.

I can definitely feel them, they feel huge to me of course. You can just see it on my neck (but I am ummmm not skinny LOL ) My doc could definitely feel them too, but my tests all seemed to come back fine. I did have an ultrasound, which showed I had quite a few nodules but none seemed cancerous. My voice is often hoarse.

I too am hoping by going gluten free the other problems will settle down a lot more. My mum has the same thyroid issues too but is also subclinical. Thankfully she doesn't have the weight problems I have.

Have those blood tests ever included a celiac panel?? I assume since you are on this forum either you or your doctor suspect this? Not many NZ doctors test for celiac, though mine does more often now :lol: Just went back and reread your post; if you haven't been tested yet you should be right away. How long have you been off gluten?

WideAwake Rookie
Have those blood tests ever included a celiac panel?? I assume since you are on this forum either you or your doctor suspect this? Not many NZ doctors test for celiac, though mine does more often now :lol: Just went back and reread your post; if you haven't been tested yet you should be right away. How long have you been off gluten?

I can't remember him ever mentioning gluten or celiacs. I just stumbled across it when trying to cure Dyshidrotic Eczema. Someone had mentioned it could be related to gluten... and well here I am LOL

I have been off gluten for over a month now, but less than two.

mushroom Proficient

Seems like stumbling across it is what happens to most of us. If it has been just over a month you might not have healed sufficiently to give an inaccurate result. Is there any chance of getting the full celiac panel run right away? I do not have the specifics, but there are five tests that should be performed, including total IGA to make sure you are not IGA deficient which invalidates the other tests. If he does not know what they are, have him look them up! Do it right away!

  • 4 weeks later...
Guest chetalrim

Hey there, I live in Australia, so thought I'd say a quick hello in here as well. No one seems to have posted here for a while, so I won't go into my whole story. I'm currently being tested for coeliac, you can read my story in the 'pre diagnosis' section.

Cheers!

mushroom Proficient
Hey there, I live in Australia, so thought I'd say a quick hello in here as well. No one seems to have posted here for a while, so I won't go into my whole story. I'm currently being tested for coeliac, you can read my story in the 'pre diagnosis' section.

Cheers!

Hi Chetalrim; we are always looking for new down under blood, we vampires. :lol: Just because no-one's posted doesn't mean no-one's around. I will check you out above, but please come back here.....I need a drink :o (whoops, forgot where I was, sorry, but do come back :) Thought I was on the psillies thread.

  • 2 weeks later...
Guest chetalrim

Hi everyone,

I get my blood tests back today, and I'll admit to being a bit nervous. Problem is, I don't know if I'm nervous about my results being positive or negative for celiac antibodies. I really, really just want an answer, and I guess I'm half hoping for it to be positive so I get one. Otherwise it will be back to square one and I'll have to just try a gluten-free diet and see whether that helps me.

I am one of those people that I hate waiting for anything!!! And I know it will take time to see if I feel better or not being gluten-free. Good grief, does this even make any sense? Anyway, I'll post my results soon. My appointment is in an hour and a half!!!

Bit scary to think I could be gluten free from today. At least that's what will be happening if I test neg to the antibodies. If it's pos then it will be an endoscopy for me.

Aaarrgh!!!! I'm driving myself crazy! Wish me luck! :blink:

mushroom Proficient

I do wish you luck, Chetalrim. May your results be conclusive and allow you to act accordingly. I know, waiting can be agonizing. Don't forget, when you post your results, put in the lab reference ranges because Down Under ranges are expressed in metric measurements rather than whatever it is the U.S. uses. Thinking of you.

Mysh Rookie

Hi everyone, I'm back after a probably not so notable absence!

I have a biopsy confirmed diagnosis of Celiac along with the confirmation of DQ2 & DQ8 genes and have been gluten-free for just over 3 weeks. I'm not struggling with my day to day cooking, but I'm very confused about label reading and so far have just stuck by the "if you can't confirm it doesn't have gluten, don't eat it" principle.

Emotionally feeling very low, as I feel this really could have been picked up so much earlier in my life. Anyway, taking it one gluten-free biscuit at a time :)

Off to trawl through the site :)

mushroom Proficient

Well, I for one, wondered where you had gone. I am glad you finally received a diagnosis, genetic as well. Now you will have to get all our kiddoes tested too, at least for the gene, and watch them carefully. How is the wee one who had IUGR?? Has he developed normally??

The can't confirm-don't eat it principle is a good one but I'm sorry you are feeling emotionally down. It is a big adjustment to make in the beginning, but does get easier as time goes by. Do they have any support group up there you could join? Sometimes just sharing the misery helps a lot. We had a lunch yesterday with one straight (as in uncomplicated) celiac, one wheat/potato/dairy intolerant, one gluten/soy/corn/nightshade/lactose/caffeine intolerant. one ulcerative colitis, and two people who could eat whatever they wanted. T'was quite interesting and fun.

At any rate, you can't look back at the what ifs, you must just look forward to the now and feeling better and (dare I say) being thankful that they found it now. Think of the others still floundering in the wilderness.

Keep up the good work and stay in touch. Have you found Marx Bakery yet? Their cookies are to die for.

Mysh Rookie

Hello again Mushroom! you were so helpful last time I was here so thank you!

My kids are all in the process of being tested atm, but my own siblings have been blaise about it. I guess being the first in our entire family has people feeling like I am the black sheep or something! My youngest is coming along quite well, he's now 6 :). He has a diagnosis of autism but i am confident we lose that along the track.

Had a wonderful trip today to the gluten free food festival in Melbourne. Had a huge feast :lol: and came away with a lot of ideas and pamphlets!

Definately need to swing my way of thinking around quickly. I'm annoyed I guess at what I've lost over the years but in the scheme of things I know I am pretty lucky. A friends father has just been diagnosed and he's 74!

Mysh Rookie

Mushroom - that definately sounds like an interesting lunch!! :o

UnhappyCoeliac Enthusiast

is there any coeliacs here on the disability pension from centrelink due to coeliac?

Quasior Rookie

Hey, what a huge thread!

I'm new here, but I've been gluten-free since January. I've posted in a few different areas. I have the (mis)fortune to be Tasmanian too - which means I don't have as much access to things like donuts.

Anyways, I got positive DNA results about 3 weeks ago. I've had symptoms for over a decade now (possibly up to 15 years). I've had one positive blood test, one negative. I've been tested about a decade ago and misdiagnosed as IBS - he didn't do the biopsy because he deduced because I'm obese I didn't have Coeliacs (I am so angry). Anyways it was because I had an underactive thyroid and went to a alternative doctor who needless to say wouldn't put me on thyroxin so I put on 80 kilos in about 6 months. Devestating! My 2nd pregnancy I had my gall bladder removed. I've tried countless diets/excercise regimes, felt worse more than better. Then I discovered this thing called Coeliac's Disease after hours of research on the net.

About November last year went to my then GP and told him - its no good I'm in so much pain/public issues (I'm sure you understand what I mean). I took myself off dairy, can you believe I got worse? Way worse. I had accidents in public, so didn't want to leave home, depressed, fatigued and embarressed. I went back to my GP in early January told him I was worse and was taking myself off gluten.

He was still skeptical. After 3 days, no more diahrea. Since then I've had gluten on occasion by accident/cross contamination and the pain/issues can last up to a week from a tiny bit. Needless to say I've kept as strict as possible.

Then there's my children. My son, R, is 4, has double the DNA markers, is pale, underwieght, underheight, lethargic, light sensitive, speech is problematic. He's now on a gluten-free/dairy free diet, keeping a diary. It's only been 2 weeks, not much sign of improvement just yet - possibly because I've only just taken him off dairy. Literally yesterday. Holding my breath about it again... we've been to the publich system, they've sent us back with "yes he's tested positive to an anti immune disorder, but he's tested negative to the bloods for coeliac's disease. we won't do anything for him at this stage." He was eating food off bread but wouldn't eat the bread, he was eating gluten-free with any shared meals with me and avoided most foods. Is it any wonder he botched the test??? Anyways, his pain is palatable, it's very visable - he looks malnurished his belly is huge compared to the rest of him and in pain ninety percent of the time.

That's before we recently found this very good GP who gave him a DNA test for it. As I said all markers were positive, now awaiting to hear back from the hospital again. I'm dreading they'll just blow us off again.

My other son, he's above average height but he is in pain/bloats/pale and has a long history of diahrea.... so he's voluntarily gone off gluten. Now he's in tears because my partner broke it to him this morning - no ice cream/donuts. I said we'll make our own, he won't go without. From the shop he brought some snakes (natural food convection company) as treats for the children. It was that straw when I told them it wasn't gluten-free that brought him to tears. He's just realising how strict it is and not liking it. :(

So anyways, Hi, hope there might be some fellow Tasmanians here, but Aussie/NZ all good. :lol: Hope to get to know some of you here... Cheers, Jules

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      Aah it sucks that there's no definitive way to confirm NCGS or celiac. I've found a GI clinic that is covered by my insurance and I'll contact them after the holidays to setup an appointment. I hope to get some sort of clarity with further tests. 
    • ABP2025
      Thanks @knitty kitty. I didn't know about thiamine deficiency before you had mentioned it. I'm doing more research into what it is and how I can test for that deficiency. Is Vitamin B1 test the best way to find it? I saw that there is another test: Erythrocyte transketolase activity coefficient (ETKAC) assay to test for thiamine deficiency but I'm not sure how that test is done. Is that something I can take on my own or do I need GI referral. If it does turn out that I'm thiamine deficient, does that confirm that I have celiac disease or could it just mean that I have not been consuming Vitamin B1 rich food and once I address that with a supplement or food, I would no longer be thiamine deficient? Also full disclosure, I'm a vegetarian and only last year I found out that my Vitamin D level was very low. It was 3.7 ng/ml and the ideal range is >29.9 ng/ml. After a year of taking multivitamin supplement, my Vitamin D level has gone up to 27 ng/ml. Though it's better than 3.7 ng/ml, it's still below the range. I'm not sure for how long my Vitamin D level was around 3.7 ng/ml before 2023 as I didn't have my Vitamin D test taken prior to that. My doctor also wanted to check my Vitamin B12 level as I might not be getting enough of it from vegetarian sources. When I took that test last year, Vitamin B12 was 247 pg/ml and ideal range is 200-1100 pg/ml. So it's still within the range though it's on the lower end of the ideal range. I also have recently started taking vitamin b-complex tablets daily. I've never checked other Vitamin B levels including Vitamin B1. Do you know if such a very low level of Vitamin D and moderately lower level of Vitamin B12 would cause celiac disease or may contribute to some of the symptoms I've been experiencing? Regarding the DNA test to test celiac genes, are you referring to HLA DQ2 and HLA DQ8 tests? As soon as I got the result where my IgG was above range, I had ordered the "HLA Typing for Celiac Disease" test in Quest Diagnostics which measures HLA DQ2 and HLA DQ8. The test is 2 weeks from now and I'll post my results here once I receive them.  
    • Russ H
      Small amounts of gliadin are detectable in some samples of human breast milk but these are at too low a level to cause symptoms. No gliadin has been detected in the beef of grain-fed cattle.   https://pmc.ncbi.nlm.nih.gov/articles/PMC5622696/
    • knitty kitty
      Welcome to the forum, @Kiwifruit, I agree further testing is needed.  Disaccharidase deficiency is a symptom of Celiac disease.   On your test results, this line  "IgA: 0.9 g/l (norm 0.8 - 4.0)" is referring to Total IgA and it's very low.  People with low or deficient Total IgA should also have DGP IgG test done.  Low Total IgA means you are making low levels of tTg  IgA as well, leading to false negatives or "weak positives".  Maybe a DNA test for known Celiac genes.   Anemia, diabetes, and thiamine deficiency can cause test results like these.  Get checked for B12 deficiency anemia and have your iron (ferritin) checked.  Vitamin D deficiency is common, too.   Might be time to find a gastrointestinal doctor who is more familiar with diagnosing Celiac Disease.   Best wishes on your journey!  Please keep us posted on your progress.  
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