Living with Celiac Disease

For most of my life I felt sick.

Looking back it was usually after I ate that I felt exhausted, bloated or itchy and just plain uncomfortable. As a kid I thought it was normal to feel bad after eating and just dealt with it. From a young age I was a night owl and would always fall asleep after eating certain foods. I mainly attributed my tiredness to my staying up too late.

At the age of 14 I became a vegetarian. Although I did not eat cheese I did eat eggs and a lot of bread. It was a constant back and forth over the next 20 years. Moreover, this lead to a lot confusion about food for me.

First Symptoms and Experimenting

In 2004 I broke out in a rash. I was living in a walk up in NYC, Christina who had a shop downstairs did my laundry. She changed the detergent for me three times and nothing helped. From here, the major life changing symptoms started.

One of the first symptoms was feeling numbness in the pointer finger of my right hand. It didn’t hurt but I just couldn’t feel it most of the time. Within a week it moved to the rest of my fingers and also my toes. Although, I’d wake up at 7am feeling good and go for a run or bike ride. By 9am, after breakfast I would be sleepy and would feel a tingle in my fingers and toes then numbness. As someone who works with her hands it was devastating. Still only able to feel my hands and some parts of my lower fingers but I continued to make what jewelry I could. This was the main symptom for the next few years.

Then in 2009 everything else started. First my skin started turning grey and then the breakouts most times I ate something.  Next, I’d get a feeling in my stomach like a balloon constantly popping. It would go on for hours at a time. The most severe and scary symptom was when I started passing out at random times of the day. I was convinced I had narcolepsy. I visited 10 doctors and specialists over the past five years and no one was able to diagnose me.

One day I was working in SoHo at the shared shop I had with other designers. Soon after eating a few bites of a sandwich, I passed out and fell off my chair. I finally realized that it had to be something I was eating. I did some research and bought a Groupon for 10 day elimination cleanse. It came with three sessions with a nutritionist. I was also working out regularly and eating as healthy as possible,  and I still managed to gain 10 lbs. At this point I felt so bloated and defeated. I figured at the least I’d loose a pound or two doing this cleanse.

After the cleanse, I felt like a new person. I had lost 6 lbs and the nutritionist said this was a lot for someone of my size. I knew right then that I was on the right track to finding my own cure. That night I treated myself to a large piece of pizza after a night out. I ended up sleeping for the next 18 hours straight. This was now my experimental phase. The next night I had half a slice and woke up 13 hours later. I spoke with my nutritionist about something called ‘Celiac’. I read about in an online search I did. This was in 2009, and there was little information about this type of autoimmune disease. The nutritionist listened to a my lengthier history of symptoms and he agreed that this was probably Celiac Disease!

I was so excited, relived and grateful that I may have found the problem. Prior to this I was a self proclaimed carboholic. Show me a bread basket and you’ll have my heart forever! I spent the next month without my beloved bread. It was life changing. I visited my GP and told him what I’d come up with. With his initial blood test we found out I indeed had Celiac Disease. This wasn’t just a mild case. It took me five years of testing three times a year to be “clean”. This means having no trace of gluten in my system.

Now it’s 2021, and most of the US is acutely aware of this disease. Currently there is no cure and I have to be vigilant everyday. It’s tiring sometimes, having to disclose my diagnosis of Celiac Disease every single time I go to eat out, have dinner with friends or when searching for Gluten Free items in a grocery store. This is not a choice. I am lucky to have friends and family around who will always give the server the ‘spiel’ when they see I am not up for saying it on my own. Even after checking the food is Gluten Free for sure but I still usually only take a few bites. I then wait the requisite 15 minutes to see if a finger or toe will go numb, or if I’ll spontaneously fall asleep.

The US government has now recognized that 1 in every 133 Americans has Celiac Disease. In March of this year, they created the 117th caucus for research and a cure. In between the caucus being created and the below act being created, I got sick and was prescribed an antibiotic. I thankfully have not needed one in over 10 years prior. I hadn’t given much thought to gluten content in prescription medication. However, after the doctor wrote me a script my next question was, “Is it Gluten Free?”

This was not my regular doctor and he was unfamiliar with my medical history. He responding by said, “I don’t know but the Pharmacist will be able to answer that”. Not only was the Pharmacist clueless on if there was Gluten in the prescribed meds but they also told me it was my responsibility to call the manufacturer to find out. I politely told them they needed to call. The pharmacy offered to call but told me,“if the manufacturer doesn’t answer we can’t help you”..and there was no answer. I did a google search and found that the antibiotic was in fact Gluten Free, so I was able to take them.

New Legislation and Support

On April 8th 2021, Representatives Tim Ryan (D-OH) and Steve Stivers (D-OH) introduced the Gluten in Medicine Disclosure Act of 2021. The bill, H.R.2435, intends to make it easier to identify gluten in prescription medications. The Celiac Disease Foundation is proud to endorse this bill, which will provide the millions who suffer from celiac disease and their loved ones with confidence that prescribed medications may be safely taken. We thank Rep. Stivers and Rep. Betty McCollum (MN-04) for their leadership in chairing the Congressional Celiac Disease Caucus, of which Rep. Ryan is a proud member.

In terms of gemstone healing, I discovered Quartz is good to have for those with Celiac Disease.

Thank you for reading and please stay tuned for more info in our next post.

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xx D