October 30, 2013

The Broken Road To Awareness

Why is Celiac Disease so misunderstood? Why is there so much varying information? Why can't we all be on the same page? Why? Why? Why?

Celiac is the only disease that I can think of, where the people who are diagnosed don't even really understand it, let alone the Doctor's diagnosing it.  We are sort of left to figure it out on our own, resulting in widespread misconceptions, wrong choices, inaccurate media coverage and best of all, the pain of accidental Glutening.


Uneducated Doctors : 
If the front line is not in order, how can we expect those who have Celiac Disease to fully understand their condition? Most family Doctors have minimal knowledge about Celiac. Many of them neglect to do the proper testing and suggest that their patients try a Gluten Free diet to see how it makes them feel. In the long run, they are only adding to the misconceptions. Due to the lax in proper diagnosis, some are just assuming that they have Celiac, when in fact they don't. Others face numerous hurdles in getting an accurate diagnosis.

Another issue is with the lack of Celiac Disease specialists. People who live near a facility such as the Chicago Center for Celiac Disease research luck out. But those of us who are nowhere near a research facility, often get put on the back burner unless we fiercely advocate for proper testing and the answers to go along with it.

Not enough awareness:  Celiac Disease awareness seems to be  IS severely lacking. Due to it being virtually non existent, people usually assume that eating Gluten Free is a choice and they do not associate it with a real disease. Both those who have Celiac and those who don't are not usually fully aware how serious this autoimmune disease is. Many people are too embarrassed to speak up and make sure food is Gluten Free, some admit that they "cheat" once in a while and others just don't know where to start. 

Resources are also limited. The support and information available to those who are newly diagnosed varies substantially from City to Province to Country. Celiac is a confusing and overwhelming disease to be diagnosed with. Many people are told they have the disease and then sent on their way with no formal education about it.

Fear mongers :  
There is a never ending flood of people with personal agendas. Weather they are out to make money, or to spread misinformation in hopes of roping people into their way on thinking (anti GMO, No Grains ect.) there are many who use Celiac as a platform to preach non related issues.

Greed: 
This one touches all facets of Celiac Disease. Gluten Free food does not need to be as overpriced as it is. Period. We have come a long way and it is clearly a highly profitable market. But we are still gouged at the grocery store. Why? Because we have no choice, we are chained to the medical need for Gluten Free.

Big companies want to sell us books on how to live and eat Gluten Free.  Many individuals have started websites to offer "helpful" information to those with Celiac Disease, but unfortunately you have to pay a fee to reap the so called benefits. Also, the information which is being sold, is widely available for FREE.

Scams and the people who buy into them:
I'm not even going to list the various companies that make this list,but I will tell you what to be vigilant against. There are MANY magic pills out there, offering a way to prevent damage after eating Gluten. Some even offer a downright cure. These are SCAMS!!! First of all, if and when a cure or remedy becomes available, it will be international news. You will hear about it from those who research Celiac Disease as well as awareness organizations such as the National Foundation For Celiac Awareness, Canadian Celiac Association and Coeliac UK . Also, after a medical breakthrough, it will be years before any type of medication reaches the market. I can guarantee you won't be able to obtain it without a proper prescription either. 


Media : Can we not get some legitimate air time? Everyone from local news stations to Dr Oz has something to say about Gluten Free. The problem is that the rare time that they mention Celiac Disease, they do so in passing, like it's not the real issue. I tend to cringe when I see a news report about "Gluten Free". The newscasters never seem to educate themselves about what they are discussing and the so called specialist is usually someone who has no real background or education in Celiac Disease. Do we discuss MS or Parkinson's with a Podiatrist? No. Contrary to what one may think, not all Doctors are created equal. This is why they specialize in specific areas of health.

The question I am left with is, how can WE as a Celiac public, band together and create the necessary and accurate awareness that is vacant from our communities?

1 comment

  1. Last wk. (Nov. '13), I sat through a Gluten e-Summit - It had lots of good, recent info. from Doctors/Nutritionists in the field. I hope more people (not just "practioners" will have access to this information soon. You're right, there is still a lot of confusion. I felt grateful to make some new links (re: causes and effects) after this summit, and to hear evolution in thinking and better advice being given.

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