Sunday, January 17, 2016

Living With Celiac Disease

When I was seventeen years old, I got sick. At first, my parents and I just assumed it was another round of a stomach bug. When it lasted for weeks with no end though, it proved to be something much more serious. After running a multitude of tests, labs, and procedures, I was diagnosed with Celiac Disease. Suddenly, it seemed clear that I was not just prone to strep throat, stomach bugs or stressing my self to the point of throwing up (Okay, the last one could go either way, but I regress...) as we had just assumed in the past years when I always seemed to be ill. I struggled still even after getting diagnosed. While I was able to start with the singular treatment available for this (eating a diet that strictly rules out gluten) I was still reactive. For almost two years after being diagnosed, I still was throwing up daily. They ran many more tests and procedures, but were never able to confirm a reason for my continued response (aka puking my brains out.)

However, time has passed and I am well managed now. As "Celiac" and "Gluten Free" have been such trendy words lately, I decided to answer some of the most frequently asked questions that people ask me about this.

Q: What is Gluten?
A: Gluten is a protein. It is mainly found in 3 types of grains: wheat, rye and barley.

Q: What is Celiac Disease?
A: Celiac disease is an autoimmune disorder. Autoimmune disorders cause the body's immune response to attack itself. In Celiac Disease, this happens when the protein, gluten, is ingested. In our intestines, we have zillions of little hair-like things called villi that line the walls and grab all sorts of nutrients out of the foods we eat. The villi then take the nutrients and help distribute it throughout our bodies. Celiac Disease causes the villi to not recognize the protein, gluten. So, instead of grabbing the gluten, the villi kill themselves off in an attempt to protect the body from absorbing this apparent intruder. This process causes the body to try to expel the offending ingested thing (gluten.) For me, this meant spending my senior year of high school with my head in the toilet... for others, it could present with frequent diarrhea... or both. It's a charming quirk. 


http://greaterorlandogi.com/wp-content/uploads/Celiac_disease.jpg

Also, Here is a link that shows some signs and symptoms listed by the Celiac Disease Foundation. 
and this is a super extensive list to make your head spin. (Just to show how varied the presentation can be. This is part of why it is so difficult to diagnose! Each patient presents differently!)


Q: How do you treat/cure Celiac Disease?
A: There is no cure for Celiac Disease. The only treatment is to strictly rule out all sources of gluten from your diet - forever.

Q: Can you just develop Celiac Disease/Why didn't you have it as a kid?
A: This answer varies. For me -  they said it was most likely genetic. My dad got diagnosed with Celiac Disease about 5 years before I did. He was totally asymptomatic, it was an accidental finding during other medical testing. My doctors think the disease passed down to me, but was dormant in my body and was then triggered by an immune response such as the flu - annnndd I then became symptomatic. This means there is a good chance I was doing years of damage to my body without knowing it. 

Q: What do you eat?
A: I don't know, what do YOU eat? (Just kidding.. sort of.) Learning to live on a gluten free diet definitely had a learning curve. I had a serious treatment team of doctors and professionals to help me learn though. I also learned lessons about what I could and could not eat the hard way... But now I am a pro. I eat a regular sort of diet, I just buy different breads and pasta and substitute somethings for other things and I have to be extremely mindful of making up for what I am not getting nutritionally. If you're really interested in this question, maybe one day I'll do a post on my diet and sample meal plans or something. 

Q: But you can cheat once in a while, right?
A: No. Never. First off, I have never crossed a meal that looked good enough to accept the pain and discomfort of an autoimmune reaction (or the part of throwing the whole thing back up.) And unfortunately, those aren't even the worst part of the autoimmune response. Even if I weren't to react, my insides are still affected. The villi will always be killed off by gluten, that will always result in malabsorption, malnutrition, and delayed healing. No amount of chocolate cake is with that. 

Q: I touched my beer. Can I touch you now or would it make you sick?

A: Unless your touching my intestines - we're good. Celiac is not an allergy - it is an autoimmune disorder. (There is also little risk of me getting sick from kissing my fiance after he's eaten bread... Yes, because people don't think it's weird to ask me that... IT IS WEIRD TO ASK ME THAT.)

Q: What is a gluten intolerance?
A: I can't give you as detailed of an answer on this one, as I have not experienced it. But here is what I've gathered over the years. Some people eat a gluten free diet because it does not agree with them, or their body is intolerant to it. (Think Lactose intolerance, same sort of thing.) However, it's a gray area. There is no way to test for it or diagnose it. It's a painful game of trial and error, figuring out what your body is intolerant to. Gluten is a sneaky little bugger that is ever present in an average American diet. This means that more times than not, gluten might not be the culprit to their illness or distress. (I think I remember a study that said this applied to close to 97% of those with a gluten intolerance, but don't quote me as I heard it on NPR and can't find a source to link here now.) Now, I'm not doubting that there is something wrong, I've been in that boat of not knowing, it sucks and it is super scary and frustrating. But since gluten is ever present in the American diet, when we rule it out, we rule out just about a billion other ingredients, proteins, chemicals, ect. That means that you could inadvertently be ruling out something like soy, which is actually the culprit of your problem, but you think that it is gluten! And just to be clear, I am so not on a high horse about this. I was able to be given a medical diagnosis and know for sure. I cannot imagine how frustrating it must be to have no way to know for sure what the problem is. The short answer is that a gluten intolerance is an adverse reaction (Usually GI discomfort from what I've heard) and Celiac Disease is an autoimmune disorder triggered by gluten, and celiac also has terribly distressing reactions.

Q: How do you know for sure that you have Celiac Disease?
A: Celiac Disease can be tested for. Once they think it might be a possibility, they run blood tests. If those come back positive, they'll do an upper endoscopy and take a biopsy of your intestines. That biopsy gives the doctor a definite answer. (It's like the pregnancy test of Celiac Disease, haha!)

Q: How do you go out to eat?
A: To be honest, any time I eat anything that I personally did not prepare, it's a gamble. But, you can't just stop living because your intestines are unfriendly and hostile to the world. At this point, I'm becoming a seasoned veteran at eating out in a gluten free style. I look the restaurant up, check out reviews from other gluten-free eaters, I call ahead of time to check to see what they can accommodate and I review the menu online ahead of time. Most of the time, I'm okay. And if I do get sick, I'm not going to die right at the table, I'll get through it - it's not the end of the world.

Q: Do you get annoyed by people who say they have a gluten intolerance because it is so trendy right now?
A: Yes and no. Maybe gluten really is the culprit for that person. If so, I'd love to sit down and share a gluten free pizza with them. Yes, it is frustrating to see someone order a gluten free pizza and then order a beer. (Beer is liquid gluten.) It's frustrating to see the lack of understanding or lack of care. It is also equally if not more frustrating to have my gluten adversities be taken less seriously because of the 'gluten free' person who also orders a beer. If a person preparing my food lacks care and precision when preparing my food because she assumes I am hopping on the bandwagon of gluten-freers right now; I pay the price. It affects the entire rest of my day, my body, and my long-term health. 

Q: You didn't tell us why you are not annoyed by these people though.
A: To speak to the 'no' in the first part of my answer, these people are also helping me. They are bringing light to gluten free and Celiac Disease. When my dad was diagnosed around 2006, not a single person knew what Celiac Disease or gluten were. A gluten free pasta was hard to find and was guaranteed to be equivalent to cardboard. Now it is popping up all over the place and some are actually pretty good. (Sure, slapping 'gluten free' on a product is making great marketing for the company right now because of the trend, but hey, I'm not complaining that more options are popping up!)

Q: If you cannot drink beer, what can you drink?
A: Great question. Seriously. Because there is no straight answer that I've come across. Beer is 100% off limits. There are a few solid and safe choices such as wine (comes from grapes) and cider (comes from apples.) After that though, it gets tricky. Some say that most all other alcohol is off limits. Others say that EVERY alcohol (Except beer) becomes gluten free during the distilling process and that all will be safe. 99% of drink companies don't put out a statement either way. On gluten free discussion forums, some say to test it out and see how you react. For some that may work, for others it won't. It also gives you about a 50/50 response on most drinks. SO. If you know the definite answer to this question, come take a seat and tell me, first round is on me. 

Q: So you're so much healthier now that you eat gluten free. Is it a healthy life choice to change to a gluten free diet?
A: Yes! IF YOU HAVE CELIAC DISEASE (or another medical reason.) If you are just looking to lead a healthier life or looking to lose weight - gluten is not a magical bean to make it happen. This drives me more crazy than anything else. If you rule gluten out, you need to have support from a gastrointestinal and a registered dietitian. (read: not nutritionist, registered dietitian.) And probably a therapist wouldn't hurt either. It is not a solve-all or a way to lose those 5 pounds. If you have no health adversities to gluten, IT IS GOOD FOR YOUR BODY. It is part of a balanced and healthy diet. If you straight up cut it out, you're also cutting out about half or more of the other nutrients, proteins and other VERY important things that make your body work. I cannot stress this point enough. I could probably write a whole ranting blog post on this alone. 




These are the questions I undoubtedly hear every time Celiac Disease comes up. I hope you feel a little more well educated about this condition. If you ever have any other questions, please feel free to ask me!!!