May is Celiac Disease Awareness month. You probably hear a lot about celiac disease but how much do you know? Do you think gluten-free is blown out of proportion? Are some people eating this way as a fad? Maybe. But the reality is not many people understand what celiac disease is and how important it is to be aware of the symptoms. Before I get into the details, let me give you a quick overview of celiac disease and what it can do to your body.
Celiac disease is an autoimmune disease in which eating gluten (the protein found in wheat, barley and rye) causes the villi in the small intestine to be flattened. You can picture the villi like little fingers waiting for food and absorbing it into the bloodstream. Celiac disease causes the villi to be flattened so that the food molecules pass through the small intestine in large pieces. This means that the nutrients of that food are not absorbed properly and, in some cases, causes your body to think the food is almost like a pathogen. Besides the obvious stomach issues (aka Irritable Bowel Syndrome or IBS) or lack of growth due to malabsorption (often referred to as “failure to thrive”), celiac disease can manifest itself with itchy or dry skin (what is known as eczema), joint pain, brain fog, headaches, depression, and about 100 other symptoms. Scary, yes? In 7 years, I have learned a lot.
I put my daughter on a gluten-free diet in 2007 because of her severe eczema based on the recommendation of a naturopath. At the time, I had not heard of celiac disease. Around 2008, I became aware of the disease but always associated it with severe abdominal pain, diarrhea, and children who stopped growing. Since she had none of these symptoms, I never thought she could possibly have the autoimmune condition that can be the cause of hundreds of other autoimmune disorders like Hashimoto’s (which runs in my family) or Grave’s disease, type 1 diabetes, rheumatoid arthritis or conditions like anxiety and infertility.
In 2009 (actually exactly 5 years ago today, I wrote my first article about it), I went on a gluten-free diet because I felt better eating that way. I would describe my gastro intestinal (GI) symptoms as mild; I had lived with them all of my life and thought it was normal (gas, bloating, and intestinal cramping). I never thought to have myself tested for the disease before I went off of gluten (now I wish I had). For the past 5 years, I have been what I called gluten-sensitive or “gluten-free lite”. I would eat gluten occasionally and suffer from a range of symptoms depending upon what and how much I ate. But I never, in a 1,000 years (as the saying goes) thought I could possibly have celiac disease; until recently.
In all of the advocacy work I do, I mostly focused on people who had severe GI issues or children who stopped growing. I had no idea of the range of symptoms, which goes from intense to asymptomatic (scary). What we are learning now is that someone with mild symptoms, like mine, could have celiac disease.
A year later, when my son was 6, he was exhibiting the GI symptoms I used to have. At that point I knew more so he was tested for celiac disease; the blood test came back negative. However we did an additional test and found he had a sensitivity to gluten; his Secretory Immuno Globin Antibodies or SIGA were very low). His symptoms were mild in comparison to many other people but were still affecting him. We took him off of gluten and in 3 weeks, he felt much better. But, I never really was 100% strict with him or any of us. I never thought I had to. At that point, I did understand the severity of celiac disease and was sympathetic to those who suffered. If I heard of anyone who had severe GI symptoms, I would suggest they get tested for celiac disease. I also started meeting more and more people who were like me, those who realized they had a sensitivity to gluten. I still did not know that many people with celiac disease.
In those years, I got better and better at gluten-free cooking and baking. I created recipes using 100% gluten-free ingredients. I began to understand cross-contamination and learned more about celiac disease, even if I didn’t think I had it. More recently, I wrote and published a cookbook, a lifelong dream, and gave talks about how to cook in this fashion. But in recent months, I started learning more details about the disease.
Do I have celiac disease? I don’t know but I do know that I carry one of the genes. I’m hedging my bet for now and treating myself more like someone with the disease because if I do have it, small amounts could be doing damage that I can’t see. If there is a test that can be taken without ingesting gluten, I might do it. For now, I’m happy to stay off of it. I’m also going on 2 years of not being sick past a small head cold. That right there is reason enough.
Here are some things I did not know about Celiac Disease that might surprise you:
-
It’s hereditary. If your dad’s sister has celiac disease, you could have it or get it at some point. If blood relation has it, you are at risk. Plain and simple. The big issue is that many of us don’t know we have it.
-
There are 2 genes for celiac disease; HLA-DQ2 and HLA-DQ8. Whether you have one or two of these genes doesn’t really matter; you are still at risk. However, having the gene does not mean you have celiac disease. What you do with the information is a personal decision. You can find out whether or not you are a gene carrier with a genetic test, either blood or a cheek swab. This is an accurate test compared to the blood tests of today. Great segue.
-
You can ask your doctor to order a celiac blood panel for you. However, a negative blood test does not always mean you do not have celiac disease. In other words, there have been many people who test negative yet still have it. Looking at other factors such as genetics and symptoms might be a better indicator.
-
You may not have celiac disease but still be gluten intolerant. There is a condition called Non Celiac Gluten Sensitivity or NCGS. People in this category can have symptoms just as severe as someone with celiac disease. If you know gluten makes you feel bad, why risk the damage?
-
Eating a little bit of gluten can make someone with the disease very ill. If you have ever eaten out with a friend who has celiac disease, this is why they ask so many questions. Be their advocate and be supportive. When their food touches a crumb or is fried in the same fryer as that chicken tender, this is called cross contamination and it can make them sick. The same goes for your house. Another hidden source of gluten is in ingredients so read the label. I recently found gluten in a bottled Caesar salad dressing which was upsetting because I almost missed it. This is why I cook a lot.
-
Some people with celiac disease have no or very little symptoms and these symptoms are not always related to your stomach. This is probably the biggest challenge in diagnosis. Some times it is obvious but often it is not. I met a girl who went to the doctor because her finger was hurt. After talking to her doctor about her health, history and general well-being, it came out that her sister was diagnosed with celiac disease. The (intuitive) doctor said “Let’s just test you for it” and sure enough, she had celiac disease. She otherwise would have been walking around with it until probably something bad happened.
-
We really do not know how many people have celiac disease partially because of point #6 and partially because doctors are just now being educated to look for other symptoms. This is why celiac disease awareness is so important.
-
If you think you might have celiac disease, get tested before going off of gluten. The options are a blood test to see if you have the disease or a genetic test to see if you carry the gene. Beyond the blood test, you can also get a biopsy or endoscopy. Another reason doctors may do this is to see the damage that has been caused by the disease.
-
From what we know, a stressful situation such as sickness, or a physical or emotional incident can turn it from off to “on”. For these people, they had the gene but didn’t have the disease. Many people say “but I have eaten wheat my whole life without a problem.” That might have been true but now, wheat or gluten can be poison to your body. If you find that you have been sick for a while and it seemed to start after a certain incident (birth, a virus, etc), get tested.
-
The fix for celiac disease is eating a 100% gluten-free diet. In the world of medicine and disease, this is a pretty good “cure”. However, the celiac disease might have kicked off other autoimmune disorders so you might not be out of the woods. This again, is another reason why it is so important to be aware of the disease and stop eating gluten if you think you might have it.
If you read this and think, “that could be me”, please get tested. Since the disease can lead to so many other life threatening diseases, it’s important to be diagnosed.
If you do need to eat gluten-free, do not consider your life to be over. There are so many resources, groups, products and other options, you will be amazed. Finding the right ones, though, might be a challenge. Take a look at my product recommendations page on my website or how to get started with gluten-free. Yes, there are adjustments to be made but you can do it.
Think you won’t be able to eat pizza, cake and bread again? Think again! Check out my gluten-free cookbook, -Amy Fothergill
I shared this post to my FB page. I love your honesty and especially love that you advocate for those of us who most people look at as attention seeking trend followers. I am still learning and falling down occasionally too. It is refreshing to find someone who can admit to that.
I enjoyed this article but I think you really should have stressed that the only way to get a firm positive diagnosis for Celiac Disease is from an endoscopy/biopsy of the small intestine (as you mention the false negative risk with the blood test). Going through with an endoscopy gave me a positive diagnosis and also gave me my life back. If you think you have Celiac, GET THE ENDOSCOPY (before switching to the GF diet of course!)!!! I love the awareness that this article raises and how it educates people who are unfamiliar with the disease and lifestyle!
I also shared your article on Facebook. Like you I went gluten free without being tested. I suffered symptoms all my life even as an infant. So much more is known about food allergies now than in years past. I enjoyed reading your posy.
4 Dog Lane, thank you for your comment. It took me a while to figure out what I wanted to say and what I wanted to share. My next step is working with restaurants. It’s all about keeping us healthy!
Anonymous, good point. I’ll try to reword a bit. Thank you for your nice words.
PaulaG, thank you as well. I have a very different outlook now. I hope this helps someone who doesn’t know what celiac disease could look like.