What’s wrong with me?
I went from knowing absolutely nothing to knowing (almost) everything about celiac disease in less than a year. After what seemed like countless doctors’ appointments, a few blood tests, and a few different trials of medication, I finally found out that I had celiac. The doctor told me that celiac disease is treated entirely through living a strict gluten-free diet. Thankfully, there are no daily medications or injections to worry about.
Although I was exhibiting symptoms for about three years, I only started seeking out medical help for weird things that were going on in my body early in 2015, and I was diagnosed only less than six months later. The average time it takes to be diagnosed with celiac is ten years. After about three years of nauseating migraines, overall exhaustion, mood fluctuations and anxiety, along with not properly digesting food (all of which I thought was “adjusting to college”) – I was relieved to know a change in diet would make feel better again.
What is celiac disease?
When my doctor called me confirming my diagnosis, I asked if I should come in to discuss or if I should seek out a nutritionist for any guidance. He said “you can pretty much find out everything you need to know on the internet.” So then I turned to Google and typed in “celiac disease.” It was my surprise to learn that celiac is not a food allergy. It is actually an autoimmune disease in which your small intestine is literally attacked by gluten. I read on and on to learn more about what I could and could not eat. I’m very thankful for finding out that I have celiac in 2015, when there are a ton of resources available and so many products to choose from. However, there is an overwhelming amount of accessible information that can be somewhat confusing because it often contradicts itself.
What happens now?
During the first month of eating gluten free, I suffered from worse migraines than I did when I was eating gluten. My blood test and endoscopy confirmed for sure that I indeed had celiac, that I was definitely not misdiagnosed – which left me even more confused. Why was I getting worse headaches than before? After some more WebMD reading, I found out that I was going through “wheat withdrawal.” As ridiculous as it sounds, it is real and it lasted for about a month or two. Without fail at the end of the day I would get an incapacitating migraine that wouldn’t dissolve until mid-morning the following day. Eventually, the “withdrawal” period finally ended, and after googling “is X-food gluten free” one too many times, I decided to see a nutritionist to get some advice that wasn’t from a website.
What are villi?
The nutritionist gave me extremely helpful advice on going out to eat and how to cook for myself. She also put me on a regimen of supplements to make up for the nutrients I was still not able to absorb in the healing period. She explained celiac disease to me in a very simple and effective manner: The villi (which are little hair-like structures lining your small intestine) get destroyed by gluten. The villi exist to absorb nutrients, so when you have undiagnosed celiac you cannot absorb any nutrients because you have no properly-functioning villi. It takes about a year or two to fully heal the destroyed villi, but after the “wheat withdrawal” ended and I was on a steady dose of the proper supplements, I felt a lot better.
What does cross-contamination even mean?
Every time I did a Google search on anything regarding celiac, I would come across something called “cross contamination.” I pretty much ignored this until I took the time to learn what it actually was. Then, I learned I had to use my own sets of cookware and utensils (unless they were glass or stainless steel) to avoid any trace amount of gluten. While using the same wooden spoon that my mom had once used to stir pasta might not directly make me sick, my villi would take the hit. This also applies to anything “manufactured in a facility that contains wheat.”
One year later
When I was following a gluten free diet for only a few days, people would ask if I ‘felt better yet.’ It is hard to tell day-to-day, but almost one year later I feel better than I thought I could have in so many ways. I have way more energy, I never get migraines, AND I don’t feel nauseous after eating. Each day I heal more and more and I continue to feel better. Many people often ask, and no, I have absolutely zero desire to ‘cheat’ or eat gluten at all. I remember how terribly I felt for so long, and I completely associate that with gluten-full foods. Finding out I had celiac was the best outcome of a bad situation. Unfortunately, celiac is an unavoidable genetic disease that you are born with and it may or may not be activated throughout the course of your life. The best thing to do is to never ignore your body telling you that something is wrong and to persistently try to find out what’s going on.
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