Last week we went back to basics with Gluten Free 101. If you haven't had a chance to read that post, yet, you can read it here. Now that you have a bit of an understanding of what gluten is and what it means to be gluten free, let's talk about Celiac Disease.
Just what IS Celiac Disease, you may ask? Is it the latest trendy disease du jour, as too many people think? Is it a totally fabricated "disease" that exists only in the minds of those who believe they are afflicted with it? Is this a new disease brought on by the multitude of genetically modified grains that have become commonplace in our daily diets? The answer to each of these questions is a resounding NO!
Though people are now becoming more aware of Celiac Disease because of so many Celiac advocates working tirelessly to educate the public and raise awareness, Celiac has been known about for much longer than most people realize. According to the University of Chicago Celiac Disease Center, a Greek physician named Aretaeus of Cappadocia who lived in the first century AD wrote about "The Coeliac Affection". To read more about the history of this disease click here.
Celiac Disease is an autoimmune disorder that occurs in people who carry the HLADR3-DQ2 or HLADR4-DQ8 genes. Studies show that approximately 90% of Celiac Disease patients have the DQ2 gene. This autoimmune disorder is hereditary. If you have a first degree relative who has been diagnosed with Celiac Disease, you should be tested, too, as you are at higher risk to have it yourself. A first degree relative is a parent, sibling or child. This is not a communicable disease. You can't get it by being exposed to someone else who has Celiac. If you don't have one of these two genes, you will not develop Celiac Disease. In fact, not everyone who does have one of these genes will develop Celiac Disease at all.
There have been and still are many studies trying to determine what, besides the ingestion of gluten, exactly triggers the genes to turn into Celiac Disease. For more information on these studies, check out these links www.cureceliacdisease.org and www.beyondceliac.org.
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| The tall villi are healthy, while the smashed nubs (also villi) are from Celiac Disease damage caused by gluten. |
In someone who has Celiac Disease, the ingestion of gluten causes damage to the small intestines. The damage occurs to the intestinal villi, tiny finger like protuberances that help you absorb the nutrients your body needs. Think of the insides of your intestines as lined with tiny pink shag carpeting. Roughly 1 in 100 people worldwide have Celiac Disease. Unfortunately, of that number, according to beyondceliac.org it is estimated that around 83% of Americans living with Celiac Disease are undiagnosed or misdiagnosed and thereby, untreated.
Symptoms can range all over the place from intestinal, neurological, dental, even mental. One of the reasons that Celiac Disease is so difficult to diagnose and so under diagnosed is because there are over 300 known possible symptoms of this disease. For a comprehensive listing of symptoms click here. To give you an idea of some of the symptoms, here are a few that I've suffered with chronically throughout my life: extreme lethargy (often mistaken for Chronic Fatigue Syndrome), severe bloating and abdominal cramps, chronic diarrhea (these are most often mistaken for IBS or Irritable Bowel Syndrome), constipation, delayed puberty (late starting my period - first one was at 12 and then nothing more until I was 15, then very irregular for much of my life), panic attacks, infertility, brain fog, trouble concentrating and focusing, hypothyroidism diagnosis, hives, migraines, anaphylactic attacks and many more. You can read about more of my personal experience from the first blog post I wrote here.
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| Me during my first anaphylactic attack in 2011. |
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| This was just 20 or so minutes before the photo above. Major reaction! |
If a first degree relative (as I talked about earlier in this post) has been diagnosed with Celiac Disease it is very important that you get tested, as well. There are blood tests that you can take looking for antibodies in your blood as well as genetic testing to see if you carry the DQ2 or DQ8 genes. The gold standard in testing for Celiac Disease, however, is the endoscopy. Even if you have a blood test that shows you likely have Celiac Disease, it is extremely important to have the biopsy through an endoscopy done. Unfortunately, I wasn't told this and received my diagnosis through blood testing only. Due to my most severe symptom being life-threatening and the fact that I'd been gluten free for several months before I learned about the endoscopy, I chose not to have it done at that point. The reason is that you MUST be still consuming gluten before and through testing! Your results will not be accurate if you have stopped ingesting gluten prior to testing. If you have stopped eating gluten before testing, you have to go back on gluten for 6 to 8 weeks prior in order to have accurate results. The biopsy is considered the gold standard in diagnosing Celiac Disease because it shows if there is damage caused to your villi. If there is damage to the villi, you have Celiac Disease. I am very adamant when I advise people about testing to tell them that they must also have the endoscopy. Learn from me. I wish I'd have had the confirming endoscopy mainly because it would have told me how much damage there was to my intestines. I know that my diagnosis is correct because not only am I not the only member of my extended family to have been diagnosed (at this count, to my knowledge, there are 5 of us with Celiac Disease and several others with Non-Celiac Gluten Sensitivity), but also some of my symptoms cleared up quickly after going gluten free, while others have taken longer. Now, after nearly 5 years since my diagnosis, I rarely have symptoms unless I accidentally get glutened or let myself get run down and then have a flair up.
If you are diagnosed, ask your doctor to refer you to a dietitian who understands Celiac Disease and gluten free. This will be so helpful to you, especially in the beginning when you are just learning. Finding a local or online support group can be extremely beneficial, as well. I'm part of both an online Celiac community and a local in person group. The connections and friendships I have made are invaluable to me.
For more information on Celiac Disease follow these links:
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