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KnightRobby

Member Since 30 Sep 2012
Offline Last Active Oct 04 2014 11:01 PM
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Topics I've Started

Celiacs Need Their Own Ice Bucket Challenge

02 September 2014 - 06:08 PM

I am sure by now you have heard of the ALS Ice Bucket Challenge.  It was created by a social media mastermind and has raised billions and billions of dollars for the disease.  So I would think ALS could see major improvement in diagnoses and treatment in the next decade.  So I was nominated by my communities to do the ice bucket challenge and took the time to mention Celiac (video below and it gets weird - I sure hope you know something about HowToBasic  :D ).  I may revisit the topic later with my community as well.  Here's the vid:

 

 

Once the ice bucket challenge wears off, in about a year I would love to see Celiac get something like this.  Diagnosing Celiac here in the US is terrible (at least from my personal experience).  From what I understand places like Italy have it in place to test before age 7.  We need something like this badly.  I was diagnosed very late.

 

It seems like everyone and their neighbor knows what ALS is now.  I want that for Celiac!


Flying And Travelling With Celiac And Hotels, Etc

01 September 2014 - 11:02 PM

Hey everyone.  Hope you all are doing well.  I run 2 networks that are becoming quite successful and have been doing them from home.  I have been told it is highly likely I will be flown out to San Francisco and Sweden in 2015.  To be honest, I hardly have traveled, which is something I regret but it has been primarily because of my crappy health.

 

I would of course have to stay in a hotel.  Anyone familiar with traveling inside and outside of the US or even Sweden when dealing with Celiac?


At A Loss; Constant Stomach Pain Continues

18 May 2014 - 01:38 AM

I have been Gluten free for about a year and a half now.  I went Gluten free, I did not get better, and went down to 108ibs.  Then I got a diagnosis of severe hayfever and now every time I eat I end up in major stomach pain.  The bloating is out of control.  I am also allergic to everything, including nearly all fruits and veggies.  It has gotten worse since I moved to AZ.

 

I managed to get my weight back up to 160ibs by drinking goat's milk and cranberry juice (yuck), the only 2 things that seem to help a little.  I am also suddenly anemic.  I don't feel like going back to a Celiac Doctor as every Celiac Doctor I have seen is an absolute joke.  It is a money making tagline now.  Anyone who is a doctor is also a Celiac Doctor, which makes it very difficult to find the real Celiac Doctors.

 

I can't eat any prepackaged foods at all, even if they are completely gluten free. They either cause SEVERE stomach pain or some other allergic reaction.  I am avoiding all allergens too but the stomach pain is so persistent.  

 

I have no clue how this happened.  I used to have no problems with gluten until I moved to AZ from IN.


Eating Out...recommendations?

21 February 2014 - 12:59 AM

Hey everyone.

 

I was wondering what everyone does for eating out?  I have Celiac Disease but I also have hayfever and it is hard to explain.  I usually have problems with the simplest of seasonings.  I don't even know at this point if it is possible to risk eating out.  I am still recovering from weighing 108ibs (now up to 160ibs thank goodness).

 

Any suggestions?  How do you handle this?

 

I am wondering if I should call around and speak to managers from various restaurants tomorrow.  I don't know how to explain this to them.  I have an incredibly specific diet at this time...And I don't know if I trust people with my food. 

 

Actually, I don't - lol

 

Opinions?


Chronic Gastritis...

01 November 2013 - 02:03 AM

My endosocopy revealed that I have a case of chronic gastritis.  Of course, the doctor that did this test ignored this, and really didn't inform me about it until later and I asked and did more homework about it.

 

I am noticing more stomach pain from this Gastritis and was wondering if anyone has dealt with it, or is dealing with it at this time?  I have seen gastritis diets and I've tried them all - and for extended periods of time - with absolutely no relief.

 

I also made a post about Tylenol and I am thinking about just trying it for the stomach pain and inflammation.  Any thoughts about Gastritis and treatments?

 

I am currently using L-Glutamine (amino acid) in powder form to encourage healing.  I am thinking about adding Green Tea, etc...