What Is This Thing Called Celiac?

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.

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.  

Me during my first anaphylactic attack in 2011.

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:

https://celiac.org/about-celiac-disease/screening-and-diagnosis/

https://siouxlandceliac.blogspot.com/2015/01/what-is-celiac-disease_2.html

https://glutendude.com/celiac/celiac-disease-symptoms/

https://glutenfreern.com

Gluten Free 101

Just last week I was in the health market section of my local grocery store where I met a woman who appeared to be overwhelmed and lost as she stared at the shelves with the gluten free products.  As I was taking something off the shelf to put in my cart, she turned to me and asked if I was gluten free.  I told her that I am and asked if I could help her.  We ended up having a lengthy conversation as she told me how she is in process of trying to get a definitive diagnosis, which she believes will end up being Celiac Disease.  She told me that she doesn't even know where to begin in knowing what is gluten free and what contains gluten.  As we spoke and I gave her as much information as I could, I couldn't help but be reminded of myself immediately following my diagnosis.  I felt exactly the same way that she is feeling right now.

Inspired by this conversation with the lady in the store, I am going back to the gluten free basics.  Anyone who has been living gluten free for any length of time will pretty much know all of this.  Tonight's post is aimed more at anyone newly diagnosed with Celiac Disease or who has non-Celiac Gluten Sensitivity or any other health issue that may benefit from eliminating gluten from your life.

To learn what it means to be gluten free, you must first begin by understanding just what exactly gluten is and where it can be found.  Gluten is a protein found in certain grains such as wheat, rye and barley.  When someone who has Celiac Disease consumes foods or beverages that contain gluten, their immune system reacts to the gluten by damaging the villi in the small intestines.  When the villi are damaged the body cannot properly absorb the nutrients it needs and, left undiagnosed and untreated, over time, this can cause many major health issues.

One of the things I've learned over the years is that gluten can hide in places you'd never imagine.  I always look at the ingredients in any product before I buy it.  If there are ingredients that I don't recognize I take out my cell phone and use a free app that I downloaded several years ago called, Is This Gluten Free?  This app works in conjunction with a bar code scanner app.  You can scan the bar code of any product and it will take you to a database to let you know if the product contains gluten or not.  There are times when a product simply isn't in the database.  Best practice to get into - if in doubt, leave it out.  Don't get it until you can learn more about it.  Your health is too important to take unnecessary risks if you don't know if a product contains gluten or not.  If you have Celiac Disease the ONLY treatment option available is to be 100% gluten free!  There is no cheating on this "diet".  That is one reason I hate referring to it as a diet.  It isn't just a diet, it is your lifestyle now.

Many products are labeled as being "wheat free".  Wheat free doesn't mean that the product is gluten free, as wheat isn't the only grain containing gluten.  The biggest thing I wish I'd have been advised to do when I was first diagnosed is meet with a dietitian.  That would have been so incredibly helpful!  I highly recommend that to anyone newly diagnosed.  Meet with a dietitian that understands Celiac Disease and what it means to be gluten free.

There are so many misconceptions about being gluten free.  I'm here to dispel some of those now.  A gluten free diet is NOT a weight loss diet.  In fact, as you heal your gut and begin to properly absorb nutrients, you may actually gain weight!  It is NOT a trendy celebrity fad diet!  Well, okay, for too many it is - but they are people who have no actual idea of the reality of being gluten free.  For those of us living with Celiac and other gluten-related health issues, it is NOT a fad - it is our life!  All gluten free food does NOT taste like cardboard.  There are many very tasty gluten free foods and you can make many regular recipes into gluten free recipes by substituting a few ingredients.  

Something extremely important to remember about eating gluten free, especially when you are newly diagnosed, is that you need to find gluten free foods that will be gentle on your damaged gut.  Foods that will promote healing and not exacerbate the problem.  Don't go crazy trying to find replacement foods for all of the gluten-filled foods you now have to give up.  The more processed the food, the more ingredients and preservatives and sodium and sugar that even gluten free foods have, the worse the product is for you.  It may taste good, but, like any other "normal" processed foods, it is not good or healthy for you.  There are many gluten free foods that aren't any healthier than regular foods even though they are labeled as gluten free.  The best way to aid in healing your gut is to stick to naturally gluten free foods as much as possible, such as fresh fruits and vegetables, fresh meats (again, the less processed, the better - be aware that many meats contain fillers and seasonings, some of which may be derived from gluten).  I buy a lot of organic foods, as often as I can.  I've cut out most refined sugars (I do have a sweet tooth, so I will have a candy bar now and then and have a bottle of soda, too - I'm working on cutting those out for good - slowly, but surely).  I mostly use organic coconut palm sugar.  I love the flavor and it is not as sweet as refined sugar.  There are many sweeteners that are healthier and great tasting.  Using honey, coconut palm sugar, 100% pure maple syrup, unsweetened applesauce as substitutes for sugar in a recipe can make it taste just as good, if not better, than using refined sugar.

A rotation diet can be helpful in healing your gut and showing you what other foods you may have sensitivities or intolerance to, as well.  For more about this check out this post at unboundwellness.com.  To help promote healing in your intestines you want to go easy on too many high fiber foods.  While fiber is good for you, because the villi in your intestines are damaged and need time to heal, too much fiber can be rough on your system.

Celiac Cutie

Remember, even though everything can seem frightening and overwhelming in the beginning, you WILL learn and you WILL adjust to your "new normal".  Give yourself time.  Find a support group - online or in person - or both!  Just being able to communicate with others who are going through something similar who can understand your fears, frustrations and experiences makes this road a bit easier and less lonely to travel down.  Find a dietitian who is knowledgeable about Celiac Disease and the realities of being gluten free.  This is someone who can help you sort out what is safe and what to avoid.  And - be gentle with yourself.  This isn't something that you are going to learn overnight.  You will get through this and maybe next time it will be your turn to help guide someone in the grocery store aisle into this new world of living without gluten.

For more resources on living with Celiac Disease and being gluten free check out the following links:

Beyond Celiac

Celiac Disease Foundation