Saturday, July 19, 2014

The Perks of a Celiac Diagnosis

Yes, this is another post on celiac disease. I realize I’m writing about this a lot right now, but honestly, it’s because it’s somewhat taken over my life and it’s now something I feel passionate about. It fascinates me and frightens me and bewilders me and challenges me. Sometimes I feel defeated, sometimes I feel empowered. When I’m feeling good, I want to jump for joy and shout to everyone that I’ve got this conquered. Celiac disease has nothing on me! But then something goes wrong and I get sick. And suddenly I want to punch the wall in anger and I find myself unable concentrate on anything else in life, not just because of the effects gluten has on my brain but because I’m scrambling to figure out where I went wrong and how the disease managed to score against me again.

For today’s excerpt of my never-ending rambling regarding celiac disease, I want to share with you the perks of a celiac diagnosis.

No, the perks do not include “an excuse to participate in the gluten-free diet fad” nor do they include “an easy-to-manage solution through a gluten-free diet.” I have many words I could say on both of those items. Neither of them fall anywhere close to qualifying as a perk. But I’ll save those explanations for another day.

Rather, here are the perks I’ve come to appreciate:

1. I got my brain back.

I just realized this the other day, and this is by far the best outcome I’ve received from my celiac diagnosis. For many, many months...perhaps years...I’ve had issues putting what I’m thinking into words. From what I can remember, I never had this problem prior to pregnancies and gluten issues (which both plummeted into my life simultaneously and are very likely related). But I increasingly noticed that I was struggling to verbalize what I was thinking. I couldn’t remember simple words, words such as “table” or “sofa”. I struggled to make my sentences flow. The worst was when I would have to give directions or state the location of something. For example, Dave would ask me where I had left the laptop. I would know and would see it immediately in my head, laying on the floor next to my bedstand. But to be able to verbalize that to him felt nearly impossible. I would have to stop everything I was doing and focus 100% on how to communicate to him the location of the laptop. “It is…” that place up there...”upstairs”....laying down on that thing... “on the floor”...positional word, what is the positional word…”next to”...that thing next to the place where I sleep, what’s it called…”the bedstand.”

I know this sounds absolutely crazy. But that is really the process I would go through, every time I got asked a similar question. Speaking, about anything, could be very hard. I had no idea what the reason was for my inability to put my thoughts into words, but I had accepted it as who I was and did everything I could to not let others know about it.  I wanted to appear competent.  I often thought it was just a concentration issue and if I would just focus more instead of being so scattered, maybe I would talk well more easily.  It frustrated me and sometimes concerned me. It made me feel ridiculous and embarrassed. And I kept it to myself. I guess I didn’t realize anything was wrong because I know I had focusing and attention issues, and I figured it was related to that.

Now, since my celiac diagnosis, and hence eliminating all sources of trace gluten and gluten-cross contamination in our house, I can suddenly communicate again. Friends, it is AMAZING. I cannot even explain to you how wonderful it is to think something in my head and then be able to speak it out loud without feeling like I’m trying to shove my brain through thick goopy syrup in order to find the right words. And I am absolutely blown away that I was experiencing such neurological issues simply from trace amounts of gluten. Remember, I was eating completely gluten-free, and had been for three years, when I got this diagnosis last month. Any symptoms I was experiencing were from accidental ingestion. Last night I told a friend about the issues I’d been experiencing with being able to verbalize my thoughts, and her eyes were wide and she replied that it sounded similar to what she’s seen in people with brain injuries. That solidified the seriousness of this for me even more. My brain isn’t something I want to mess around with. And I am SO GRATEFUL that I got it back.

2. Renewed Health

This one is probably a given.  I feel better.  I’m no longer experiencing intense daily fatigue. I’m no longer getting a new cold every other week. (Yes, I previously seriously got a new cold every other week. Now I haven’t had one since my diagnosis.) I’m no longer getting canker sores. My anxiety and ADD-type symptoms have lessened quite a bit. I’m starting to be able to concentrate at work. As long as I haven’t been previously glutened, I’m not bloated and I have no abdominal pain or nausea. (When I do get glutened, it seems even more intense now. But that will be another post.) I’m not running to the bathroom in sprints at random moments. Overall, it’s a complete 180 compared to prior to my diagnosis.

3. A Support System and Place to Belong

Perk #3 is all the supportive people I’ve met and the feeling that I “belong” somewhere with my gluten issues, resulting health problems, and need for a strict gluten-free lifestyle. I’ve joined online support groups, started reading celiac blogs, and have learned such an incredible amount about it all. I, in a way, feel like a member of a new club, and the members of this club are rooting for me and helping me get my life back. I feel validated and understood by these people. It’s so motivating.

4. A New Sense of Self-Control with Food

This perk started somewhat even before my diagnosis, back when I started eating gluten-free, but it’s now been solidified even more since needing to follow such a strict gluten-free lifestyle knowing I have celiac disease. I have now learned to say “NO” to foods that I know would taste absolutely delicious. I’ve learned to walk away from snacks, drinks, even entire meals, if I think there is even a remote chance that those foods will damage my body. I’ve learned to read labels. I’ve learned about cross-contamination, manufacturing practices, GMO, organic, and certification processes. I know SO MUCH MORE about foods and what I put in my body, and I actually feel in control of it, rather than led by my cravings. Yes, sometimes I still feel downtrodden. I miss certain items. I’ve even been known to cry over it occasionally, when I’m feeling very frustrated and left out of the “normal” world where people get to eat together while they socialize. I can still remember the taste of Oreo cookies, cinnamon butter and rolls from Texas Roadhouse, and Pizza Hut pizza. I still wish I could easily go to my friends’ houses for dinner and partake in whatever dessert they have to offer. But I know that I can’t, I know it’s not safe, and I know I have the ability to say no. It’s empowering.

5. A New Understanding of My Body

Since my diagnosis, I have started to pick up on many of my body’s quirks. Perhaps this is because I’ve now had the opportunity to feel like a normal, healthy person for a short bit, and so when things go awry again I’m able to pick out what is wrong and what was likely to have caused it. Based on my symptoms, I can tell when I’m dehydrated, when I’ve probably consumed gluten, and when I’ve probably consumed soy. I know what it means to feel good now, which means I better understand what it means to feel bad. Feeling sick had become my normal prior to my diagnosis, and so I really had nothing to compare it to in order to figure out what was causing what. But now I have had at least brief times of normalcy and health, and so I know what to look for as a signal that something isn’t right.


These are the perks that have stood out the most to me. There are many others I could list, but these are the ones that have struck me as most significant. I asked a gluten-free Facebook group what they considered to be the perks of a celiac diagnosis, and here were the most common replies:

  • No more symptoms (symptoms listed included swollen legs, pins and needles in legs, night terrors, migraines, exhaustion, searching for bathrooms everywhere they go, falling asleep while driving, asthma attacks, eczema breakouts, bloating, brain fog)
  • Newly diagnosed (and hence malnourished) children starting to grow and thrive
  • Being healthy again
  • Being able to live life again
  • Easier to say no to junk food and fast food
  • Knowing you’re not damaging your body
  • Just knowing what’s wrong
  • Knowing you’re not the only one
  • No more people and doctors acting like you’re a hypochondriac
  • A deeper sense of empathy and compassion for others with disabilities or illnesses
  • Learning to cook and eat healthier foods

We all have different experiences, different symptoms, and different levels of sensitivity. But I was excited to see how many people could look on the positive side of things and realize that there ARE some perks to an celiac diagnosis, as much as it makes your life difficult at the same time.  So kudos to all of us.  We got this. :)


Related blog posts:
Celiac Diagnosis
The Gluten-Free Insanity I'm Now Living In
To My Family and Friends - A Letter and Guide from Your Celiac




2 comments:

Daisy said...

I'm sure you have, but have you seen a Dr and been checked for intestinal infections and such? Little gross but a stool sample, etc? Some infections can cause intolerances and are really, really easily treatable once diagnosed. I hope it becomes easier for you soon..:such a pain in the butt, literally! X

Kara @ Just1Step said...

Hi Daisy, I went through a series of evaluations and such three years ago, when I first started experiencing terrible symptoms. And now that I have the diagnosis and I'm learning my body, I'm able to trace pretty much everything I experience back to gluten or soy. So I'm pretty sure those are the issues and that I don't have an infection or something similar. Very good thought, though, I appreciate it. :)