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A Little Gluten Contamination Here, A Little There
*I’m not a doctor or medical professional of any kind. I do not offer medical advice. This post is posing questions and wonderment about the various ways we experience reactions to gluten exposure. In regards to gluten’s ‘cumulative effect’ I am going to share a recent experience I had with gluten contamination over the course of several days.
How Does Gluten Impact You?
Those of us with celiac (or non-celiac gluten sensitivity) often get asked this question: How does gluten affect you? We also get asked: Is a little contamination really harmful?
The answer is yes, definitely. (Beyond Celiac describes cross contact here.)
How often do we even know we’ve been exposed?
Many people have a definitive answer. They are able to describe their exact reaction and the timing it takes for that reaction to occur after gluten exposure.
Many of us, however, aren’t quite sure. I can certainly tell you the impact gluten had on my health. I can tell you the damage of consuming gluten through all those years without a correct diagnosis. It was huge! After recovering from symptoms of gluten exposure now, I can generally tell you, “Yup, I was glutened.” But even after 18 plus years living gluten free, I cannot always give a definitive reaction I experience or a time it takes me to react.
Why can’t I tell you how I react to gluten contamination? – because it isn’t always the same.
And since I have not purposely consumed gluten (not one single time) since I was diagnosed with celiac in September 2000, whether I experienced gluten contamination or not is often an educated guess. I think I was glutened. Actually, it’s more of an, I’m pretty sure I’ve been glutened. And like the ongoing exposure I recently experienced through small amounts over a few days, it becomes clear–eventually.
Gluten's Varied Affect On Me
Gluten impacts me emotionally and it impacts me physically, as I shared in my post about the first decades of my life. But the gluten affect varies for me. I find this very interesting, but it is also confusing at times.
Fatigue
I came home from work one day, several years ago, feeling extremely tired. It wasn’t just, a long day at work, kind of tired. I was exhausted! I recognized that feeling as one that I experienced all too often prior to removing gluten. So much unnecessary fatigue.
The only thing I ate that day, that I was unsure of, was a Reese’s peanut butter Christmas bell. One. Just one. I knew Reese’s peanut butter cups were gluten free, so I risked it with this temptation that I couldn’t resist.
(After the length of time that I’ve been gluten free, temptations like the one above are not anything like they were those first few years.)
After a little Google search I discovered that those Reese’s Christmas bells were not gluten free. Their website stated that their holiday shapes were not gluten free. I had an answer to that fatigue.
This experience also helped to decrease my temptations in the future. Is it worth it? Nope.
Mood Impacting
Within weeks after going gluten free, back in 2000, I realized the impact gluten had been having not just on my physical health, but my emotional health as well. I had been living for years thinking I had major PMS (at least 3 weeks of every month). Nope. It was gluten. Occasional cross contamination over the years has reminded me of this fact.
My husband has only known me since being gluten free. We met five years after I was diagnosed (and 3 years after my first marriage ended). He didn’t know my crabby side. But then we went camping. All the supplies were his. Silly me. I didn’t clean them before we went. I didn’t inspect them in order to judge which ones I should clean and which ones I should replace. A few days after our little trip, I became a little, emotional.
As my few emotional days subsided, I recognized the passing of that familiar gray cloud, that cloud I lived under for years. It had me realizing that I’d been contaminated. And that’s the way it is sometimes. I don’t always recognize the fact that I’ve been glutened while in the middle of experiencing the crabby side. I have gotten much better at recognizing it, however, and work extra hard to not make others have to pay the price for my emotions. But I also very rarely experience gluten exposure.
I hadn’t experienced gluten cross contamination for quite some time prior to our camping trip. It took me a while to recognize the fact that what I was feeling was due to being glutened. “I wondered what happened,” my (now husband) said to me when I told him his pots and pans were apparently not safe.
Mood Impacted In An Even Bigger Way
A handful of years or so ago I was impacted in an even bigger way. Everyone at work was ordering lunch together. I decided to go ahead and order. The pizza place we ordered from advertised gluten-free pizza. I called to inquire about and was comfortable with the manager’s description of how their gluten-free pizzas were prepared. I felt as though they took care to avoid cross contamination.
When the food arrived, however, I instantly had an uneasy feeling. Mine wasn’t marked in any special way. My gut reaction was not to eat it. Bu I didn’t listen. That darn pizza smelled so good. And I was hungry.
I do NOT advocate that kind of risk. It certainly isn’t something I generally do. It was a weak moment, however. And it was another lesson learned.
I came home beyond exhausted. And through the next few days my emotions got the better of me. I was able to function while I was at work, but I couldn’t stand life much beyond that. I let my emotions out when I got home, emotions that accumulated throughout the day. I couldn’t help but burst into tears. And it honestly took some time to figure out why.
I spent the evenings holed up in my room with the door locked, not letting anyone into my room or my world.
A few days into this state of depression (yup, it was full-on depression), I noticed dozens of small bruises all over my legs. Gluten exposure is often followed by bruises on my legs (for me) but I had more bruises than I had experienced in the past. This was when I realized that this depression I was experiencing was a reaction to the pizza I ate. And I wondered if it was cross contamination or if I actually ate an entire regular pizza.
My Most Recent Experience
I had some food left over from an event last week. It was all fresh and naturally gluten free, but it was from a restaurant, so there’s no guarantees. I had some of it Thursday night, at the event, and some more for lunch the following day.
By early Friday evening, I was complaining of exhaustion. I was over-the-top tired. Push me and I’ll fall over kind of tired. But I had good reason. It was an emotional and yet amazing day. I was privileged to witness my grandson come into the world that day. Yes, I had a good explanation for my fatigue.
My daughter called me that morning thinking she might be in labor. The doctor wasn’t convinced she was. Two hours after they thought they could send her home, however, that baby was born. What a privilege to be present for that experience with mommy and daddy!
This was one fast and intense labor and delivery! My grandson didn’t even wait for the doctor to return. Whew! Nope. I wasn’t thinking gluten when all I wanted was my bed before 8:00 that night.
Another Day Of Just OK
I got up Saturday, still fine, although tired. But I was also excited. I was off to the hospital to visit my daughter and her new little family addition.
I hung out with my older grandson who was visiting, while mom showered and while dad went home to shower. I started to feel very agitated after an hour or so and just wanted to be home.
It was lunchtime, so I had another meal with those darn leftovers. And for the rest of the afternoon I felt completely unmotivated. I had to push myself to get anything done.
No Ambition. Zilch. None.
I woke up Sunday morning feeling completely worthless. My husband was sitting in his recliner watching TV. I just climbed into his lap like a small child, telling him I had absolutely no ambition.
Gluten contamination still wasn’t on my radar.
I went into the kitchen and made myself some scrambled eggs using a handful of the bacon and ham from those leftovers that I’d been eating off of.
The Physical Reaction Hit
The question of gluten hit almost immediately after breakfast. I can live for days with the emotional stuff before recognizing the gluten connection. But the physical reaction takes me a much shorter period of time. The quick need to run to the bathroom had me finally putting the pieces of the puzzle together.
And then the body aches started.
Oh how I didn’t miss those body aches. Funny how you forget the things you learned to live with for days out of every month over the course of years! And for what reason?! – because too many doctors don’t recognize that their patients with IBS should be tested for celiac. Because too many doctors don’t recognize that their patients with other auto-immune diseases should be tested for celiac!
It makes me angry. It frustrates me. And it reminds me of the need to keep advocating. There are far too many people living with unrecognized and untreated celiac symptoms. This past experience reminded me of how I spent far too many years of my life in needless discomfort and agitation. And it empowered me to keep pushing the individual celiac stories in hopes of reaching more of those who are living with undiagnosed celiac.
Was I Hit By A Truck?
I pushed myself through Sunday afternoon, painting my front foyer. Sounds silly that I felt like total crap yet I pulled out the paints to continue this full-house painting project. But I had a lifetime of having to push through. I had lots of experience. At least now I know that it is not my life. At least now I know that it will pass.
But damn! By evening I was in pain! I felt like I’d been hit by a truck. Every muscle in my body hurt. I went to bed at 8:00 and didn’t get out of bed until 8:00 the next morning. Does gluten contamination impact me? Indeed it does.
I started feeling better the next day. It took two to three days for that achy feeling to go away completely, however.
It’s been a week now, and I’m almost back to myself.
Trust
So here’s the thing. I can look back and see that if I just ate one meal from that food, I probably wouldn’t have known I was glutened. I honestly believe the cross contamination in that food was very low.
But there was obviously gluten in that food. I went a little further downhill each day until I finally realized what the heck was going on. The rest of the leftovers were going in the trash that day anyway, but I was now sickened by the thought of eating it (or anything at that point).
It makes me wonder: How often do I have small amounts of exposure when dining out, without ever realizing it? Is it worth the risk?
For me, it is all about balance. Health is so very important. I don’t ever (EVER) intentionally consume gluten. I am cautious when I dine out, eating only where I trust the most.
But while eating out is risky — it is also a part of life I don’t want to give up. My husband and I enjoy our date nights. I no longer risk eating gluten-free pizza from a pizza place. I don’t eat from regular bakeries that bake gluten-free once a week. I don’t eat at fast-food restaurants.
It’s about making choices that offer the lowest risk at establishments that offer the highest trust.
It Is Safe Because I Didn't React
Wrong. Have you ever heard anyone say that? Have you ever felt that? I truly believed that the food I was eating was OK. I didn’t react the first day. I didn’t react the second day. But continued ingestion of tiny amounts did impact me. Just because we cannot feel damage does not mean damage isn’t occurring.
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I know exactly how you feel! I have had so many different reactions from being glutened. I’ve known about my celiac disease for about ten years. I would love to have discussions with people who understand. If you are newly celiac or have had it for forever and want to ask questions or share information please feel free to email me at katyroseleonardi@gmail.com
This is one of the first articles that describe exactly how I feel. I found out I was celiac about 10 years ago when I was 13. I have had a variety of reactions relating to being “glutened”. I have gotten migraines, felt the exhaustion and the mood swings, felt the pain from intestinal swelling, nausea, joint pain, the whole schabang. I would love to have discussions with people who understand where I am coming from. Thank you for writing and sharing! Please feel free to email me at katyroseleonardi@gmail.com anytime.
About a year ago my dr had me do a medical cleanse and then slowly add back in certain foods. Gluten was one that I never could add back in. If I did consume it my reactions were exactly as you’ve described! Because if this I’ve tried to live the last year gluten free…. but I’ve never been tested or officially diagnosed. Would it be worth going on gluten for the 6-8 weeks to be able to be tested ???
It would be nice to have an official diagnosis but I don’t know if I’m ready to deal with having gluten.
Mindy, you could look into the genetic testing. If you have negative genetics, the likelihood of celiac disease is extremely low. It’s often to best do this with a professional who understands the genetics. Some people consider that sufficiently exclusionary to confirm non-celiac gluten sensitivity or move on to testing for rarer conditions. Positive genetics, however, mean more testing is needed if you want the answer.