Celiac Awareness

Wednesday

A Little Awareness Goes A Long Way (pass it on)



WHAT is Celiac Disease?

  • Celiac Disease is an autoimmune disorder where the villi of the small intestine become damaged by consuming gluten (a protein found in wheat, barley and rye)
  • When a Celiac consumes gluten, the body reacts by attacking itself because it views gluten as the enemy
  • Untreated, Celiac can cause anemia, malnutrition and increase the risk for other autoimmune diseases as well as some Cancers
  • Some people with Celiac also suffer from Dermatitis herpetiformis (DH) which is a condition where the skin breaks out in painful rashes and blisters
  • Celiac is genetic, meaning it can be passed down in families
  • There is no known trigger, but those with the Celiac gene can develop the disease at any point in their life
  • Once the disease manifests, there is no "off" button and a strict gluten free diet is important


WHO should be tested

  • 1st-degree relatives of someone with Celiac such as a sibling, child or parent
  • Those with unexplained infertility
  • People with Down Syndrome, Turner Syndrome, Osteoporosis or Type 1 Diabetes
  • If you have unexplained and chronic GI issues or have iron, B12 or folate deficiencies

WHY accurate testing is important

  • With an accurate Celiac diagnosis, you are able to start a gluten free diet without doubt and you will have a better chance adhering to it
  • If you have a negative blood test and symptoms are still present, further testing needs to be explored as an IgA deficiency can cause a false negative blood test
  • Ruling out Celiac is just as important as confirming it. It enables you and your physician to further explore your symptoms and hopefully pinpoint the cause


HOW to be tested properly

  • Remain on a normal gluten-containing diet (cutting back gluten will sku test results as well)
  • Have your physician run a blood test to measure levels of certain antibodies - anti-tissue transglutaminase (tTG) anti-endomysium (EMA) and the anti-deamidated gliadin peptides (DGP)
  • While a positive antibody test is able to suspect Celiac Disease, it is not conclusive (false positives can happen for various reasons) and further testing needs to be explored. This is where a biopsy comes into play as it allows Doctor's to check for damage to the lining of the small intestine
  • Feeling better when gluten is avoided does not necessarily mean you have Celiac Disease. Irritable Bowels Syndrome (IBS), Celiac, Chronic Fatigue and various other autoimmune disorders are easily confused for one another
  • If you are already adhering to a gluten free diet, you will need to undergo a gluten challenge to ensure accurate test results. This means you will need to consume 10 grams of gluten (4-5 slices of wheat bread) daily for up to 8 weeks. If this is not an option for you, there is genetic testing available. It won't diagnose you as Celiac, but it can rule it out if you do not carry the gene.





The Celiac Iceberg


This is such an important visual of Celiac Disease and it's many facets. As the photo depicts, people who have Celiac and show symptoms are just the tip of the iceberg.


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?

Saturday

Blame Gluten....When It's At Fault

Sometimes people make me laugh, shake my head and then wonder.There seem to be a lot of folks out there who blame Gluten for just about everything. I have seen enough silly statements to draw a comparison to an old Country music joke. No offence to anyone who enjoys Country music ;)
Lets remember that misinformation spreads like wildfire. Celiac is not contagious but stupidity and ignorance seem to be. Believe it or not, many of the points below have been wildly debated about in Celiac forums. I certainly do not blame the newly diagnosed - it's a learning curve. There just seems to be so many people that add fuel to the fire by constantly spreading falsehoods about this complex and misunderstood disease. Heck, most Doctor's don't even correctly understand.


  • Celiac Disease is not responsible for your fear of heights
  • The dog did not do it's business inside to protest your Gluten Free ways
  • A mosquito landing on a piece of regular bread and then biting you, will not make you ill. Unless it's some West Nile Virus kinda thing.
  • Meat from a cow that enjoys wheat will not cause a Celiac reaction.
  • The scent of the bakery section at your grocery store is not making you ill. That's called anxiety and you are making yourself sick by fearing a reaction.

All jokes aside, the problem with blaming Gluten/Celiac for everything is quite serious and could be detrimental to ones overall health. As no two Celiac's are alike, it is up to us to understand our reaction(s) to Gluten. By blindly condemning Gluten when it is not the real culprit, we risk further harm by not seeking medical attention when necessary.



Sobeys Celebrates Celiac Awareness Month


Sobeys is celebrating Celiac Awareness Month. In honour of this, they are having a pretty nifty sale on Gluten Free items.





I was beyond happy to see Gluten Free sale items in their own highlighted box, AND that Sobeys went the extra mile to state that 1 in 133 people have Celiac Disease. 




Thank You  for doing your part to spread awareness Sobeys ! And thank you for stating that Celiac is an Autoimmune Disease!




* Please keep in mind that sale items may vary from location to location


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