Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

UnhappyCoeliac

Cure Imminent?

Recommended Posts

I read in the local paper the Herald Sun here in Australia about some sort of drug in the trial period which minimizes the damage done when a coeliac consumes gluten.

I have recently been ignoring this disease and denying I even have it so my knowledge is very little. If there is a cure in the works say 5 years away... I simply wont be changing my lifestyle at all and waiting for it. I am asymptomatic which almost makes things harder as my only repercussion for eating wrong is being a lil tired. <_<

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Hi. :)

Well that "lil tired" may change into other symptoms that are not so minor before any kind of treatment arrives. :(

I spent years foolishly using that tiredness to guarantee a nap, a couple of pieces of toast and I was asleep. One day I crossed a line that I didn't know existed and now any gluten at all makes me very ill. :( I mean any as in one crumb can cause me pain for days.

The consequences of ignoring a Celiac diagnosis may be devastating, while you may not have any digestive symptoms problems often arise in other ways, as in other auto-immune disorders. Take a look around at people's signatures and see five, ten years of ill health before they finally received a diagnosis of Celiac.

While you may not feel, I guess it is obvious from your post, :) that having received this diagnosis is a positive thing from my perspective you are blessed. Twenty years ago no-one talked about Celiac and I didn't understand that my migraines were connected to gluten, if I had known then I would have been able to prevent the damage I have done to myself.

As for the remedy in trials, I won't be taking it. I understand now that my body needs whole unprocessed foods for real health and that is what I want.

I hope things work out for you. :)


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

Share this post


Link to post
Share on other sites

heyyah! We are in the process of seeing how far celiacs runs in the fam. starting with my kiddos and working back generations. (kiddos and husband with IBD & IBS)

crazy thing though. my mom was diagnosed with colon cancer last year at the grand old age of 52!!! it was very bad at the time, she almost died, is in "remission" but keeps getting pre-cancerous growths. I'm trying to get her to get tested.

Even though I am not "symptomatic" if I my test results come back pos., even just for the for the gene, I'm going gluten free!

If I can reduce my chances of getting the same nasty cancer as my mom has I'm going to!

Hope that is an encouragement. (Namaste brownies are gluten-free and amazing tasting, I make them w/chocolate chips and they encourage me to stay gluten-free too!) :lol:

Share this post


Link to post
Share on other sites

Well, firstly a cure is in all probability, not imminent.

Focusing on some distant *possibility* (not certainty) while ignoring your own body, is not the best idea. :unsure:

Some thoughts - Have you been tested for vitamin deficiencies, anemia, had a bone density scan, and all the other various manifestations of celiac? You might find it easier to deal with celiac if you had a very good picture of what your body is experiencing.

Frankly, the little bit of tired you may feel is likely the only thing you are aware of, but other damage is being done. Just because you can't see it or feel it doesn't mean it's not happening.

Adhering to the gluten-free diet may stave off osteoporosis, infertility, neurological conditions, diabetes (and other autoimmune disorders) and --- will help you avoid certain cancers. Untreated celiac puts you at higher risk for all sorts of things. The link below, from a well-known celiac center in the US will be helpful with that info:

http://www.celiacdiseasecenter.columbia.ed...ociatedCond.htm

It sounds like you might feel more empowered and less unhappy with the diagnosis if you got involved with a local support group. There are great resources here online, this message board for one, but it sounds like since you are having such a hard time with the diagnosis you might do much better with meeting some fellow celiacs face-to-face. Have you tried contacting the Coeliac Society of Australia? There might be a group that meets locally.

http://www.coeliacsociety.com.au/

also -- www.daa.asn.au

also -- what about a site like meetup.com ? Not sure if it is widely used in Australia or if there is another site doing the same thing there.

Share this post


Link to post
Share on other sites

You can't count on drugs or other cures. You have no idea if this drug will pass clinical trials or if it will be as effective as researchers are hoping. You have a cure available to you right now. You can stop eating gluten. I know it's not easy, but it's an amazing, side-effect-free solution. I'm sure you know the long-term consequences of continuing to eat gluten. It's up to you to figure out what will motivate you.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

Share this post


Link to post
Share on other sites

I went to the doctor last monday and he mentioned that People were working on a pill you can take to reduce the symptoms or something like that... So That would be nice... I will try it If it comes

Share this post


Link to post
Share on other sites

What a great post. :) Well worth reading again.

Well, firstly a cure is in all probability, not imminent.

Focusing on some distant *possibility* (not certainty) while ignoring your own body, is not the best idea. :unsure:

Some thoughts - Have you been tested for vitamin deficiencies, anemia, had a bone density scan, and all the other various manifestations of celiac? You might find it easier to deal with celiac if you had a very good picture of what your body is experiencing.

Frankly, the little bit of tired you may feel is likely the only thing you are aware of, but other damage is being done. Just because you can't see it or feel it doesn't mean it's not happening.

Adhering to the gluten-free diet may stave off osteoporosis, infertility, neurological conditions, diabetes (and other autoimmune disorders) and --- will help you avoid certain cancers. Untreated celiac puts you at higher risk for all sorts of things. The link below, from a well-known celiac center in the US will be helpful with that info:

http://www.celiacdiseasecenter.columbia.ed...ociatedCond.htm

It sounds like you might feel more empowered and less unhappy with the diagnosis if you got involved with a local support group. There are great resources here online, this message board for one, but it sounds like since you are having such a hard time with the diagnosis you might do much better with meeting some fellow celiacs face-to-face. Have you tried contacting the Coeliac Society of Australia? There might be a group that meets locally.

http://www.coeliacsociety.com.au/

also -- www.daa.asn.au

also -- what about a site like meetup.com ? Not sure if it is widely used in Australia or if there is another site doing the same thing there.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

Share this post


Link to post
Share on other sites
You can't count on drugs or other cures. You have no idea if this drug will pass clinical trials or if it will be as effective as researchers are hoping. You have a cure available to you right now. You can stop eating gluten. I know it's not easy, but it's an amazing, side-effect-free solution. I'm sure you know the long-term consequences of continuing to eat gluten. It's up to you to figure out what will motivate you.

Perfectly put!

@Rinne -- thank you :-)

Share this post


Link to post
Share on other sites

I imagine your mom had to go through some very nasty treatments for her colon cancer, like chemotherapy, radiation, etc. You have the luxury of being dx'd with a serious autoimmune disease that has a simple, painfree solution; the gluten free diet. No shots, no chemo, no pills for life, no insulin. There is a chance your insides are heading down the same road as your mom. You don't know for sure if you're not. What you can know, is that with the gluten-free diet, you can do everything within your power to prevent it.

Your family depends on you and your being healthy for them to love in the years to come. Please... consider your future and safeguard your health. Whatever your decision, you can still come here and we will be here for you.

Share this post


Link to post
Share on other sites

thanks for the responses.

Tomorrow is the day I go gluten free. Thank you for the positive posts. Im simply not going to put anything in my mouth that may not be gluten free..

Ive also researched MS and I wont be living with that A/ financial problems B. No parents no one to look after C. no quality of life.

So if I develop that just because of wrong food choices my life is over and im only currently 22 :

:angry::blink:

Share this post


Link to post
Share on other sites

That's wonderful news. :)

And now you know this is a great site for support. :)


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

Share this post


Link to post
Share on other sites