Chronic Fatigue and Celiac Disease: From Femme Fatigue to Gluten Free Foodie

“I was a balloon that deflated for no reason. Life suddenly required every single ounce of fight and willpower just to keep my head up.”

That was my description of my ongoing “fatigue plummets” to my doctor. I had previously been diagnosed with chronic fatigue syndrome, which is a very obtuse diagnosis, with no clear treatment. Here, I will share my journey of how I went from chronic fatigue to celiac disease.

The way my doctor described fatigue, is that it’s like a pie. We can try to address certain slices as we discover them, but there may always be slices that are unknown.

We attempted to do that through extensive blood work, multiple allergy medicines, and multiple lifestyle suggestions. I changed my job, I changed my mattress, I changed my eating habits. I changed my exercise patterns, water consumption, vitamin intake, daily routines, and still suffered from fatigue day in and day out.

To feel rested after a night’s sleep is something I cannot recall experiencing since I was a child. People would say “Ha! Welcome to being an adult.” But they didn’t understand. Their version of being a tired adult did not include fearing for their safety while driving when brain fog hit. They didn’t drink gallons of coffee only to still feel like there was an anvil of exhaustion pushing them down. They didn’t sleep for 4, or 11 hours, and wake up feeling just as heavy laden with exhaustion as before.

I did.

Finally, I went to the appointment where I insisted on my right to be heard. I demanded my right to be taken seriously. Women, we know how tiring this can be.

Doctor: So, what’s going on?

I recapped our attempt to address my chronic fatigue for several years now, and I expressed a few things. First, that I understand how busy he is. I understand that many patients are looking for things to be wrong with them. It all came down to:

“I am struggling. My quality of life is drastically impacted. I have tried everything I can think of, and I don’t know what else to do. I need help.”

Somehow, that calm yet desperate plea opened a door of understanding in our doctor-patient relationship. Finally, I was heard.

This opened door led to my diagnosis from chronic fatigue, to the autoimmune disorder, celiac disease.

If you’re not familiar with celiac disease, some information can be found here. Celiac disease is the autoimmune condition that triggers upon a person’s consumption of gluten. Gluten, a hefty staple in my diet for, well, my entire life.

I received my results on vacation, and was told to immediately stop eating gluten. Like the nerd I am, I dove into research research research. Undoubtedly, my external processing drove my family bonkers, but I had the validation of not being crazy. I finally had a diagnosis for some of my issues! This was followed with the stress of “what does this mean?”

I learned that while most cases are genetic, it is possible to develop autoimmune conditions later in life. This can happen after the onset of a particularly traumatic or stressful event. I happened to have just come through two years of traumatic and stressful events. My doctor theorized that this was the case for me.

Now, let me clarify something very important.

Needing to be gluten free, is different than trending to be gluten free. Celiac disease is an autoimmune condition. My body will literally attack itself. Consuming even one crumb of gluten (through bread, a glutinous grain, a restaurant counter that wasn’t cleaned properly, flour in the air that landed on my food, etc.), launches an immune response, and my body starts attacking. Since there is no “actual” threat to attack, my body attacks the villi of my small intestine. This damage can continue for up to three months from just one crumb! It can lead to failure to absorb nutrients, leaky gut syndrome, a higher risk of cancers, and more.

Going from chronic fatigue, to celiac disease gave me a lot to learn, and a major lifestyle change to accept. The alternative was to risk my health and my wellbeing.

Celiac disease is not the same as “being gluten free because it’s trendy.”

When celiacs order high maintenance food at restaurants, (which I guarantee you makes us all SO anxious and uncomfortable) it is because our health literally depends on it. When we don’t eat the potluck that fictitious Aunt Marge brought, that’s “gluten free, sure!” it’s probably because Aunt Marge likely doesn’t know what we know. She doesn’t know that gluten hides in soy sauce, or cracks in her Teflon, or scratches in her spoons.

We have to know, because we have to be the advocates and protectors of our health.

Fear is now a common part of dining out. So many “trending gluten free” people have tainted the importance of dietary needs like this without cause. There is a severe lack of education on the difference between gluten free safe, and celiac safe foods.

There are differences between a “gluten sensitivity” or gluten allergy, versus “celiac disease.” Read more about that here.

Absolutely I have been “glutened” multiple times by restaurants who lacked the education on how to safely cater to my needs. Once, I ordered a salmon salad (without the “ancient grains”) from the restaurant’s fancy, leather-bound, gluten-free menu. I dove in and took a bite before realizing that it was made with farro. The manager came by and said, “oh, that’s farro. that’s not gluten.” But….yes it is. (Lack of education).

I promptly ran to the bathroom and cried, while fighting off the gluten headache that was already setting in. The manager was yelling at his kitchen staff for failing a “very severe allergy.” Celiac disease is not an allergy…but we have to pick our battles.

After, I bought pineapple juice (anti-inflammatory, and it has enzymes that help to break the gluten down faster). Chugged that down. The next step is GF advil (even medications can be cross contaminated and have to be labeled GF to be safe). Finally, I took lots of deep breaths.

Going out to eat used to be my favorite thing. What used to be such a treat, had become a total nightmare of anxiety and stress. That is until my beloved father bought me a Nima Sensor. This little robot has protected me from countless “gluten free meals” that would have harmed me. If you’re also a celiac, please invest in one. It takes out so much stress and worry! Also, here’s a fun and sassy book to provide a dose of commiseration and guidance.

There are so many mistakes that can directly impact a celiac’s health if we are not 100% on our game. Here’s to always micromanaging the heck out of every restaurant experience. #sofunright?

From chronic fatigue, to celiac disease: A little over a year since my diagnosis.

I still have chronic fatigue/a few other mysterious issues. Thankfully, I’ve been blessed with a reprieve from the previous level of severity. I’m in therapy (therapy is for EVERYONE!), I cook most of my own meals, and have a handful of celiac-friendly restaurants that can cater to me safely. I have found great services like Thrive Market, which deliver dietary-specific groceries to your door. (Use this link to try Thrive!) I have the amazing support of my wonderful partner. Who by the way, promptly jumped onto the gluten-free bandwagon with me, without me even asking. My family helps as they can when I see them. I’ve discovered some nice GF products. Life is pretty good.

All of this is to say, if you are also suffering from mysteriously-caused fatigue, brain fog, depression, etc. I encourage you to keep searching for the answers with your doctor!

Make yourself heard, advocate for your health, and do your own research. You may not feel like a million bucks, but you may feel at least a little bit better. We must not be doormats.

Today, I have embraced my #celiaclife, and am no longer terrified of every meal. I am grateful for the diagnosis which led to this progress, and for the gumption that took me there.

It is my goal to empower others, armed with what I have learned the hard way. If I’ve accomplished that goal, leave me a “like” or comment to tell me, and remember to subscribe!

Much love,

Rachel

“We can do hard things.”

Glennon Doyle, Untamed

I cannot recommend the book, “Untamed” by Glennon Doyle, enough! It will empower, inspire, and awaken you!