Anxiety Girl: Life with the World's Worst Superpower

There's Nothing Trendy About Celiac Disease

A lot of people don’t understand what it’s like to have Celiac disease. Sure, there are countless articles about it, but people are still unaware of how serious it can be. Even medical professionals are skeptical of its seriousness.  I recently saw a new doctor and had to give him a rundown of my medical history, which is very normal for a first appointment. But after I mentioned that I have Celiac disease, the doctor looked up at me and asked, “Now are you a true Celiac? Because I know Celiac and gluten-free diets are trendy.”

I’ve been a diagnosed Celiac for nearly seven years, and during that time, a lot of people have asked me if I’m following a gluten-free diet as part of a trend. Friends, classmates, co-workers and strangers will say they admire my discipline or tell me they “tried the gluten free thing” but couldn’t keep it up. I’m constantly explaining to people that I’m not following some sort of trend, that I have Celiac disease and need to be gluten free unless I want to spend the next week of my life in the bathroom. Following a gluten-free diet is a piece of (gluten-free) cake compared to having to explain why I’m on the diet. But even though I’m used to people asking questions about my diet, I never expected a doctor to question it.

I’m not going to get into the whole story of how I was diagnosed with Celiac disease, but I will share the highlights. When I was 13, I was diagnosed with social anxiety disorder and hypothyroidism. During that time, I had severe stomachaches, which doctors assumed were a result of either my thyroid issues or my anxiety. I was treated for both conditions and lived the next few years with a healthy thyroid and manageable anxiety, but the stomachaches never went away. I continued being tested for various stomach ailments. I had countless blood tests and an ultrasound as doctors tested me for everything they could think of.

Doctors wanted me to describe the pain as dull, achy, crampy or stabbing, but the only way to describe it was that it felt like little men were living inside me and pinching my organs. Eventually my doctors gave up on testing me. They told me the stomachaches were all in my head and just a symptom of my anxiety that Zoloft couldn’t help. When I kept complaining, they diagnosed me with irritable bowel syndrome, even though I didn’t have many symptoms of it. They gave me IBS medicine, which didn’t help. My parents grew frustrated and took me to a new doctor. After reading an article about Celiac disease, my mom asked my new doctor to test me for it. He was skeptical at first, but the blood test came back positive. He quickly set me up with a pediatric gastroenterologist so I could have an endoscopy done.

A week later, the doctor called to confirm Celiac disease. I immediately started a gluten-free diet. It took about a year to get all of the gluten out of my system, but when it was finally out, I felt great. In fact, it was the first time in 15 years that I actually felt good. There was no pain! I could eat food without having to deal with tiny men pinching my organs afterward. There were times following my diagnosis where I made mistakes and suffered the consequences. After helping to bread the onion rings at a catering job, I experienced a major migraine for the rest of the night. (Celiac disease isn’t just a a gastrointestinal problem. It can lead to migraines, rashes and various ailments.)

After seven years with Celiac disease, here are some of the most important lessons I’ve learned:

There aren’t varying degrees of Celiac disease.

If you have Celiac disease, any amount of gluten will hurt your system. It’s possible to not have a reaction to a few crumbs, but your intestines will notice the gluten. That’s why it’s so important to be careful about cross-contamination. Your body might not react to a little bit of gluten, but you could still be damaging your insides, which could lead to more health problems in the long run. Some people who can’t eat gluten don’t have Celiac disease, and for those who are just sensitive to gluten, there are varying degrees of sensitivity.

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  • Anna Carpico

    Hey there,

    Really enjoyed your article and as a coeliac myself it definitely hit home. I live in the UK and here you are very lucky. With an official diagnosis through an endoscopy you then become entitled to free prescriptions (in Scotland and Wales, you pay in England but not much compared to buying it in shops) so I get pasta, bread, pitta breads and crackers on my prescription. Like you say Italy is great.. I have an Italian husband so visit quite often and the choice of pasta especially is amazing though there are lots of bread products and cakes too. I must say I think the choice in mainstream cities in the U.S. and Canada are really good too and have a lot of choice but my experience is mainly of Portland, OR, Seattle and Vancouver so appreciate these are big cities with big food stores.

    Anna x

  • Claire Hanrahan

    Thank you for writing this. I spend so much time with people trying to tell me that perhaps a little wont hurt. Or a little will even help me get over it (if i eat a little then a bit more, to build up a tolerance). It drives me insane and is basically like being told what is wrong with you isn’t real.

    • Anna Carpico

      Ah yes that ‘a little won’t hurt you’ comment drives me mad. One person I know wo says this has their own chronic, autoimmune illness and would hardly like it if I told them just to get on with it.
      I think it is the whole idea that it’s a fad or like a not serious allergy because we maybe don’t have an adrenaline pen or don’t react in such an ‘obvously’ severe way (ormat least I certainly don’t) but the problem is still very much real. I see a specialist and he is very good and talks about the ‘index of suspicion’ saying essentially that more GP’s and doctors generally should suspect as a problem as he believes worldwide there are many undiagnosed people out there. In some ways, even with all the crap we have to put up with about it we are the lucky ones for being diagnosed and having an answer to our symptoms.

  • Alex Kraus

    Thank you for writing this-I felt like I was reading my own life story! I’ve endured most of the same issues and I will admit that I still am working on my anger regarding the gluten free trend when so few people took my diet seriously as it was even ten years ago. I appreciate the awareness that this article can bring Celiac Disease and the every day struggle that comes with it.

  • Anna Walters

    I don’t have celiac’s but, I do have a gluten allergy. and I agree with everything you say here!! It frustrates me that people think I do it cause its a fad… no, I legitimately feel like death when I have a reaction, or spend my life in the bathroom. My favorite is, “So, what can you eat?” I also don’t understand why I have to pay more money for gluten free options, its not like I choose to spend oodles of money on so called more “healthy” food choices, I don’t choose to be broke after grocery shopping, I choose to not feel like crap for the rest of the week. I was happily surprised a couple months ago however, when a pizza chain here in MN offered gf pizza without additional charge!! But then, I went out to DC to visit my brother and it was hell trying to find places to eat, like I guess I’ll have another salad… And the places that offered gf options, were absolutely disgusting. (I know, its #firstworldproblems all over the place here)
    Anyway, the bottom line is, restaurants and grocery stores need to be more conscious of allergies and diseases.

  • Brittany Clayton

    I have celiac. I been aware and gluten free almost a full year now. Glad I caught it before I fell pregnant. I feel much better these days my stomach pain is almost gone. The one thing that is making me bat shit insane is the craving for bread. I want a burger, a chicken sandwich and some pizza so bad id kill for it. But I just keep on my gluten free diet. Sampling the various gluten free food products that enter the local markets. Gluten free bread so far is just a waste of cash. Shar is the worse, it smells weird and taste strange and is like stale bread. 6$ for a few pieces of the nasty stuff. I am skeptical to waste more money on different brands.

    • Chelsey Falco

      Hi Brittany! It took me a couple years after being diagnosed to be able to enjoy gluten free bread, but now I practically live off of Udi’s bread. I prefer their whole grain, but so does every other gluten free person, so it is always out of stock. If you haven’t tried it yet and live in the US, I highly recommend Udi’s. I think it’s worth the price. Thanks for reading!

  • Amanda Lindsey

    I an not a Celiac, but I have a gluten sensitivity so severe I might as well be. I didn’t find out until I was 25 (four years ago) but since going gluten-free I’ve often wondered if I would have had a much better childhood if we figured it out earlier. Pretty much everything you’ve said had me thinking, “Is this me writing this article?” I’ve had so many people either roll their eyes at my “trendiness” or automatically assume it’s not that serious since I’m not a Celaic.
    My biggest problem is actually with my family. I live in a big city with a lot of gluten-free options, but when I visit my family out in the country, people sometimes look at me like I’m speaking a foreign language when I talk about gluten. Because they only have to feed me a few times a year, and I’m the only one in the family with a diagnosed intolerance (though I wouldn’t be surprised if others in my family are just afraid to find out), it’s a constant barrage of “can you eat this? What about this? What/how do you eat anything? How long do you have to eat like this?” every time I visit. Even after a long discussion about fixing dinner, I still narrowly dodged a bullet by catching my grandmother flouring the roast before putting it in the pan (she’s 80 and set in her ways, but still). Sometimes their lack of initiative to learn about my condition makes me wonder if they just think I’m going through a phase or being difficult.
    It’s great that more people are aware, but I long for the day when people will take the time to actually understand the risk we take letting them prepare food for us.

  • Bettina Moore

    OMG….it is so nice to have this kind of confirmation. When I was 18 and having terrible stomach pains, vomiting and diarrhea I was told I had a “nervous” stomach and told to eat crackers and toast as part of a bland diet. Even to this day my friends who say they understand don’t truly until they see the aftermath of accidentally eating some. The terrible rumbling noises, the hold your stomach pain, the vomiting and more debilitating pain for the next 12 – 24 hours….and then running to the bathroom for a few days. Red brick pizza offers a gluten free crust and it tasted soon ooh good…..and ruined 4 days of my life. But I have a very supportive group of friends and when I visit my dad he calls me stressing about how to feed me for days before I get there. That’s also great about the extra time given to prepare food. I spend one whole day cooking for every week because fast food is a big no-no. What a great artcle. I did want to let you know that celiac is about cytokine production and I tried making a hot cereal from quinoa and had one of my worst attacks ever. I was able to find a recent study done on Celiac s and it found that some varietals of quinoa cause as much or more cytokine production in celiac patients as wheat does. You can find a reference to the study here
    I now avoid it like crazy…talk about classic aversion therapy, lol.

    • Chelsey Falco

      Thanks for reading, Bettina! And thanks for sharing that article about quinoa. I’m definitely going to have to pay more attention to how I feel after eating quinoa to see if it’s bothering me or giving me any symptoms similar to gluten!

  • Hannah Overton

    This is great! I deal with a gluten allergy, and I can’t tell you how many times I have to explain that I’m not following a trend. But I think a lot of people still just don’t know what being “gluten-free” really means. I gave an informative speech about it in my speech class, and so many of my classmates came up to me after and said they hadn’t even really known what gluten was. I’ve had to walk out of restaurants when the waiter or waitress tries to think of a list of things that are gluten-free and says something that I know is not gluten-free. I think it would be so much better in the U.S. if more people were educated about gluten.

  • Chelsey Falco

    Thank you all for your comments and for reading this! It’s great to see so many people can relate to my experience and share my hatred of the phrases “A little bit can’t hurt!” and “Well what CAN you eat?” Thanks so much for sharing your stories!

  • Lisa Klingler MacDonald

    Why does the text not come in on some of your articles?

  • gluten free baked goods

    Gluten free of charge meals is necessary for those obtaining celiac disease or seeing their diet plan from foods which might be not healthful.

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