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My Celiac Disease Story // What You Should Know About Celiac Disease and Living Gluten Free

Personal

Maybe you didn’t know it, but May is Celiac Disease Awareness Month! I know, I know, it seems like literally every day of the year has some kind of declaration attached to it (National Avocado Day, anyone??), but this month’s title actually means something to me because celiac disease has been, and still is, a big part of my life.

I’ve been diagnosed with celiac disease since 2009, and suspect that I’ve had it for much longer (since middle school probably). Despite seeing multiple specialists for many years, no one could figure out what was wrong with me, and some even suggested that there was nothing wrong. I had to do my own research and finally suggested to my gastroenterologist that I be tested for the disease. Lo and behold, the results came back as I suspected, and he said I had the most positive result he had ever seen in his 30+ years of practice. It took about 9 years from first symptom onset to my diagnosis! I also did my graduate school project years later on increasing awareness and diagnosis of celiac disease in primary care, so I’ve been deep in the research!

While the general public is becoming more and more aware of celiac disease and gluten, there are still a lot of myths and misunderstandings out there. So I thought I’d share my own story in case it helps someone else out there get diagnosed and/or realize that they’re not alone! But let me first start with a few facts to bring you up to speed…

What is Celiac Disease anyway?

I figure I’d better start with a good definition and a few facts about celiac disease just to clarify any misunderstandings out there! The Celiac Disease Foundation has a ton of information if you’d like a more in depth look, but in general, celiac disease is an autoimmune disease, in which the ingestion of gluten causes a person’s immune system to attack his/her own small intestine. Since the small intestine is where most nutrients are absorbed, this causes various vitamin deficiencies and other problems. It’s almost like your body is destroying itself from the inside and you’re not really absorbing anything that you’re eating.

It is NOT an allergy, but more in the category of rheumatoid arthritis or multiple sclerosis type diseases (autoimmune diseases). Celiac disease affects about 1 in 100 people worldwide and the vast majority of people who have it are undiagnosed. And why is that? Well, it’s probably because many of the symptoms are extremely vague and the presentation varies a lot in different individuals. A lot of the symptoms like headaches/migraines, skin rashes, fatigue, joint pain, and infertility are often misdiagnosed or even brushed aside by health care providers who may not know the changing nature of the disease.

Why should you care if you have celiac disease?

Well, because those with celiac disease are 4x more likely to develop a small intestine cancer and 2x more likely to develop coronary artery disease. If untreated, you’re also more likely to develop other autoimmune diseases, neurological diseases, infertility, and various other ailments. Plus there’s also a genetic component, so your first degree relatives (parents, siblings, and children) have a much higher risk of having the disease as well (1 in 10 chance).

How do you get diagnosed?

It’s actually pretty easy! You can start off by asking your primary care provider for a celiac disease blood test (I won’t bore you with the actual names of the tests or what they mean, because I can totally nerd out on that!).

But there’s a caveat- you have to have been eating gluten for 6 weeks or so before the test. The reason for that is that the blood test actually detects antibodies directed at your small intestine, so your body needs time to create those antibodies in response to gluten. If you’re gluten free at the time of the blood test, you may get a falsely negative result.

If your result is positive (high), your primary care provider should refer you to a gastroenterologist who will likely recommend a small intestine biopsy to see if your intestine has been affected. This test is a bit more involved, but I can tell you from personal experience that it’s way easier than a colonoscopy! 🙂

What if your provider refuses to test you??

Over the years I’ve encountered friends and colleagues whose primary care providers actually refused to test them for celiac disease. In that case, if you have a good reason to suspect celiac disease based on your symptoms or history, I would show them current research, tell them if any first degree relative has the disease, and if all else fails, try to see someone else or make an appointment with a gastroenterologist. Don’t give up! I actually have a friend who was told by her provider that she “couldn’t have celiac disease” because she was Asian. *Insert palm to the face here* Like, what?? Celiac disease crosses all racial and ethnic lines! And just so you know, she finally found someone who would test her and it came back positive!

So as you can see, some health care providers may have outdated knowledge on celiac disease. It used to be thought of as a primarily northern European disease that occurred in children. But times have changed and it’s now found in all kinds of people around the globe and is primarily diagnosed in adults.

Is there a treatment?

I’m glad you asked! YES! Celiac disease is the only autoimmune disease for which the exact trigger is known- gluten! So by eliminating all sources of gluten in the diet, one can actually recover from the various symptoms of celiac disease! (Please note that there is no “cure” for the disease that will allow you to eat gluten again, so those with diagnosed celiac disease will have to live gluten free for the rest of their lives).

That being said, gluten is a tricky thing these days because it can be found in so many unexpected places. It’s not just in foods, sauces, marinades, and dressings, but also can be found in medications, cosmetics, chapstick, lotion and other things! Yeah, bet you didn’t think that you’d have to think about your chapstick or medications (all things that could end up in your GI tract)!

And it’s made even harder sometimes in that gluten is not one of the top 8 allergens and therefore doesn’t have to be declared or marked on any food or product (wheat has to be marked, but something can be wheat free and still contain gluten). So it can sometimes be quite a chore to figure out if something contains gluten. (To give you an idea, I have to find out the manufacturer of any prescribed medication and then call them up to ask about gluten in their product. And some are quite vague about it!)

My Story

Okay, now that you have the facts, I wanted to share a bit about my own story in case it helps you or others!

Looking back I can see that my first symptoms of celiac disease started when I was in early high school. The first thing I really remember is trying to donate blood for the first time and being denied due to anemia (low red blood cell or hemoglobin count). I went to my primary care provider at the time and found that my hemoglobin was around 7 (for anyone that doesn’t know about hemoglobin levels, the normal range for women is 12-15, and we often give blood transfusions for a hemoglobin in the 7 range). I was found to be severely iron deficient, which makes sense now that I know that up to 20% of cases of iron deficiency anemia can actually be attributed to celiac disease (lack of absorption of iron in the small intestine due to damage to the intestine).

Well at the time my doctor just gave me iron pills to take, and eventually my numbers came back up and I stopped feeling short of breath (red blood cells carry oxygen, so if you have a lack of red blood cells, then you often tire easily or feel short of breath when doing minimal activity). And so I moved on with my life…

But shortly thereafter I started developing debilitating migraine headaches where I would go blind in one eye and have to curl up in a dark room with a cold pack on my head for entire days.

Fast forward to college when I developed a mysterious rash on my arm that no one could figure out (I tried anti-fungal creams, steroids, etc). And then in nursing school I started to fall asleep all the time. I would fall asleep reading, driving, and even in my clinical rotations at the hospital. My nursing instructor was concerned and made me go to the school clinic where they told me that I was depressed. But I actually wasn’t depressed! It was almost like they couldn’t figure out what was going on, so they just slapped some vague college kid diagnosis on it all. *Insert another palm to the face here* I did my best to keep going, even though I would accidentally sleep through my classes and thought I was going to fail just for that reason!

After finishing nursing school in Maryland I moved out to San Francisco and worked night shift at a hospital while I not only continued to struggle with the migraines, rashes, and severe fatigue, but I also started developing severe GI problems like really bad reflux, bloating, and diarrhea. I was seeing a dermatologist, pulmonologist/sleep specialist, and gastroenterologist. After having a sleep study test, I was diagnosed with narcolepsy and was prescribed stimulants to stay awake. The stimulants made me feel so jittery, but my mind was still a complete fog and many days I still felt like I couldn’t get up off the couch. Things were rough.

It was then that I decided I was going to have to figure things out for myself. I did a ton of research and came up with celiac disease. I knew with 100% certainty that that’s what I had! Every single one of my symptoms was on that list and so many of my immediate relatives had other autoimmune diseases. It had to be it! And long story short…I was right!

After finally being diagnosed, it still took me years to learn how to live gluten free. Modern day medicine just leaves you to fend for yourself after your diagnosis. I didn’t have any follow-up, just a “You have celiac disease; stop eating gluten.” Many insurance companies wont even pay for a consultation with a dietitian for celiac disease (only if you’re overweight or have diabetes). What’s up with that?!

I went totally medication free once I realized that the stimulants I was taking had gluten in them, and eventually all of my symptoms went away! But even though I started to feeling physically better, there was also an emotional journey to going gluten free. It’s like I was excited to know that there was actually something wrong with me all along, but it was so daunting to know that I would have to be gluten free for the rest of my life.

You start to realize how much of our lives and society revolves around food. I had to eat before going to parties and dinners at other peoples’ houses. I had to come up with a nice way to ask people what was in the food that they made for me (it’s not their fault, but so many people don’t know how strict we have to be or that gluten can hide in all kinds of ingredients). I had to bring snacks and food with me everywhere I went because I didn’t know when there would be food that I could eat. And I got anxiety about eating out at restaurants because I never wanted to feel that sick again! Believe it or not, I actually had a recurring nightmare where I bit into a roll and then would wake up in a panic screaming “nooooo!”

For the first year of my diagnosis I made nearly all of my own food. I even baked my own bread. It was exhausting. I was also found to be lactose and fructose intolerant (common due to the destruction of your intestine), so had to avoid any dairy as well as fruits and vegetables with high fructose content. Many days I just didn’t know what else to eat, so I had rice and chicken. Like, all the time.

Slowly, over time, I started to feel more confident in choosing gluten free foods, reading labels, and standing up for myself at restaurants and gatherings. It was such a process, but I finally feel completely confident in my gluten free life and now I educate other people on celiac disease and living gluten free whenever I can! It’s so helpful to know other people in the celiac disease/gluten free community and to recognize that other people have been where you are or are going through the same thing. YOU ARE NOT ALONE!

Final thoughts…

So friends, if you’d made it this far, THANK YOU!

I hope my story has helped you or inspired you in some way. I hope that I can be a resource for you if you need someone to help you sort things out. And I hope that you leave here with a better understanding of what celiac disease is and what those of us who have it have gone thorough. And if you’re struggling with your health or an unknown condition right now, just know that you’re not crazy. You know yourself better than anyone else. Keep going; keep doing what you can; and never stop searching for answers!

Please feel free to reach out to me if I can help you in any way or if you just need someone to listen to your story! You can find me at Sarah@SarahEichstedtPhotography.com

And happy Celiac Disease Awareness Month to all my fellow celiacs out there!

P.S. If you liked this post, you might want to check out this one: 5 Tips for the Gluten Free Adventurer!

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