Did I get glutened?

I ask this often. I wonder repeatedly if something I ate got me or if it was something else. Most of the time I think it was something else but let’s go through the steps to think this through.

The first question is – Do you know what a gluten reaction looks like to you? Everyone’s reaction is different. Some react immediately, some react in a day or two, or some may not react at all. For me, if I get glutened, I’m vomiting within 4 hours. My reaction has changed dramatically over time. The only reason I know this is from the gluten challenge with the Nexvax trial. Without that gluten challenge, I would have no idea.

Which brings me to a radical idea – I think everyone should do a gluten challenge. Why? Why on earth would I put myself through all that pain and damage my intestines just to know what my gluten reaction is like? You are right it is a crazy idea, but hear me out. It is so that you know exactly how your body responds to gluten. It is so that you don’t have to guess at what may be causing a problem. You know for a fact if you got glutened or not.

For a long time, I had daily diarrhea and is what drove me to get a diagnosis of celiac. Yet, even after diagnosis, daily diarrhea. I could measure it on a clock. Anywhere between 2:30 and 3:00, I would have pain and diarrhea. I thought that was just the way my body worked. It wasn’t bothersome and I could plan for it. I did the gluten challenge. Now, I vomit within 4 hours of gluten ingestion and get constipated. I didn’t poo for 5 days after the gluten challenge, when I was used to daily diarrhea. Diarrhea wasn’t a symptom of glutening for me. In the 2-3 times I’ve been glutened since, it has been exactly the same. So, now I know for a fact, when I’ve been glutened. I can pinpoint the cause of the damage. But without having gone through the gluten challenge, I would not have known.

So, now that I’ve made my case for a radical idea. I’ll get back to the reason for the article – figuring out what made you sick!

Did you eat outside your home in the last 24 hours? If so, was the restaurant or location a 100% gluten free. We all know when we eat at home we have 100% control over how the food is prepared and can ensure its safety. When going out to eat or at a friend’s house, we do not have the same control. I would say if you are sick within 24 hours of eating outside your home, that is probably the source.

Did you “take a chance”? This one is controversial too. Sometimes we take chances. We are out, starving, someone says something is gluten free and our gut says no, but we do it anyway. I’m not saying this happens often, but I’m sure it happens. Let’s be real here – none of us are perfect. We live in the real world. Maybe its due to peer pressure, accident, your friend’s sister’s cousin makes great gluten free items and this is safe, hunger, etc., whatever reason, I’m sure it happens. We try as hard as we can, but sometimes we fail. We might even have evaluated the situation incorrectly. Whatever the reason, stuff happens. Just do better next time. 😉 If you “took a chance”, yup, probably got glutened there.

Here’s one – “I ate corn, millet, dairy, quinoa or other cross reactive food.” There is one scientific article sponsored by Cyrex Labs that talks about gluten being cross reactive with milk, corn, millet, oats, and yeast. The problem is, Cyrex Labs sells a test to test for these “cross reactive” items. Also, they mentioned that most of the items tested could have been contaminated with gluten. There are no other scientific studies that I was able to find that could specifically say there is a cross reaction. This is controversial and I’m not sure I 100% believe. If you believe, then remove the item from your diet and keep on trucking.

This is the hardest one – “I ate a new food.” This is different than taking a chance. This is eating a food marked gluten free or made in your own kitchen that should be safe, but you are having symptoms. Our microbiome really likes eating the same stuff. When you throw something new at it, sometimes the microbiome gets irritated and can cause some reactions. Again, a reaction because you ate something new and a gluten reaction should be different. Theoretically, the gluten reaction should be stronger. So, sometimes you have to eat a new food a few times before confirming the gluten reaction. Obviously, if you have a severe, anaphylaxis type reaction, do not eat the food again and consult with your doctor!

Finally, if you eat at home and know you didn’t accidentally contaminate yourself, it is unlikely what is happening is a gluten reaction. It may be something, but it might be unrelated to celiac disease. Lots of things make lots of people’s tummy’s upset that isn’t celiac. Even with celiac those rules apply.

In conclusion, know your body, know your reaction, and be safe out there. Lots of things can get us, but our job is to keep ourselves safe as much as possible.

PS – I’ve been glutened 4 times in the last year. Sushi – I thought it was gluten free soy sauce and they told me it was, but it wasn’t. Nexvax trial – twice – gluten challenge and food challenge. Pancakes in Boston where they promised me repeatedly it was safe – it wasn’t.

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