Celiac Research

Wednesday

Thoughts On a Cure For Celiac Disease


Several clinical trials underway to find a cure or at least a potential treatment for Celiac Disease. The future is full of hope and I'm excited for that.

There are those out there who see this hard work as a waste of time. They see the Gluten Free diet as enough. Perhaps for those with an intolerance or allergy, it's indeed enough. 

As a Celiac, the gluten free diet can be problematic at times. Avoiding gluten is not an easy task. Many countries are far behind in ingredient labelling practices. Another issue is potential  food recalls - errors happen and gluten can accidentally be left off the label or land itself in what should be a safe product. It is often hard to get quick and accurate information on whether or not prescribed medications are gluten free. On top of that, many people suffer from ongoing symptoms despite following a gluten free diet. This is called Non-Responsive celiac disease.


I believe that you can honour the needs of your body with a strict gluten-free diet, while accepting the need for preventative measures. Let's face it, a strict gluten-free life (notice I didn't say diet?) is not always 100% achievable. 

I'm not holding out hope for a cure that erases celiac disease from my life completely. It's part of me and I've come to terms with that. What I would like to see is a companion treatment to the gluten free diet. A safety net to catch me and prevent serious damage when I have been glutened.

For me, the desire is two-fold. I really don't enjoy the sickness and pain involved with even the smallest exposure to gluten. I also despise the anxiety of what if's that follow recovery from a glutening. You guys know what Im talking about here.

While I understand that a treatment for celiac may not be everyone's cup of coffee, it would be nice to have the option. Keep in mind that it's a personal decision and everyone's situation varies. There is no need to belittle anyone for wanting a potential treatment. Just like there should be support and understanding for those who wish to battle on with the gluten-free diet as a sole source of treatment.



Alek's Controllable Christmas Decorations for Celiac Research

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Do you enjoy looking at Christmas Lights?
There's a website on the Internet that uses several webcams to provide a live view of thousands of 'em.
You can also CONTROL them - yes, turn them on & off with a click of a mouse from your home PC ...
plus you can even inflate (or deflate) the giant Elmo, Frosty, Santa, SpongeBob, and Homer Simpson - D'OH!
So surf over to the Christmas Lights Webcam
to check out all the fun action at the totally free site which also raises awareness about Celiac Disease Research at the University of Maryland.







Thursday

Alek's Controllable Halloween Decorations for Celiac Research


Alek Komarnitsky is a parent on a mission. His two boys have Celiac Disease and for the past 7 years he has been doing something spectacular to help raise awareness for the condition. He decorates his house to the extreme for Halloween. It really deserves to be on an HGTV Halloween special. It gets better too....We can control the lights! Alek's website offers us the opportunity to view the decorations on 3 live webcams. You can even inflate/deflate Homer Simpson, the Incredible Hulk as well as other awesome characters. Alek's Controllable Halloween Decorations for Celiac Disease is probably the most innovative and interactive way to raise money for Celiac Disease yet.




If you enjoy the decorations (and hard work) please consider donating to the  over $60,000 raised for the University of Maryland Center for Celiac Research. Don't forget to  send an instant message over the webcam. You can also watch the fun and excitement on Halloween night. 

After the American Thanksgiving You can view Alek's Controllable Christmas Lights for Celiac Disease



Friday

Celiac Cure In Our Future?

There has been chatter lately of a scientific breakthrough regarding Celiac Disease. Researchers at The Walter and Eliza Hall Institute of Medical Research in Melbourne Australia have been working on a vaccine. One that is showing favorable results! The first phase of this clinical trial is now complete. Essentially the vaccines goal is to desensitise the bodies reaction to gluten, thus avoiding toxic rejection.

Photo by dzingeek available under CC (by-nc-nd)

Key Points to remember


  • Phase 1 studies show that the vaccine is safe and well tolerated
  • This vaccine could treat up to 90% of people with Celiac Disease
  • Phase 2 trials to take place within the next 10 months
  • Vaccine name : Nexvax2 


Would YOU take this vaccine?
Feelings seem fairly mixed. I'm not sure if it's just people who are against vaccines in general or if some people really feel that a GF diet is sufficient. I have thought deeply about this. For me personally, maintaining a strict GF diet is not and should not be the end of the road. I WANT A CURE! Following a GF diet is difficult and costly at the best of times. Even with caution, slip ups happen. It is virtually impossible to live a 100% Gluten Free life. I read every label but manufactures change ingredients without notice from time to time. Cross contamination does happen in restaurant's even with GF menus. It sucks but its part of life. 


We deserve a cure. Right? Perhaps we need an advocate for Celiac Disease. Someone with the power to be heard. Someone who will campaign for us and make the issue a household name.

If the vaccine were available to me after successful trials, I would gladly take it. I'm pretty sure I would still maintain a gf lifestyle. But the vaccine would take away my constant fear, my worry over "whats in that" ? I would no longer fear eating at a restaurant or feel left out at a gathering. It would also, hopefully give me the option to eat something containing wheat if I choose to do so.

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