Celiac Patients Are Bad at Judging Gluten Exposure Based on Symptoms

Excellent article, and great work with this study.

I have read many posts and comments from people who eat out often saying, "I am not that sensitive" or "I never have a problem", when in fact this study just proved otherwise.  How many of those with celiac are eating out and not know they're ingesting gluten?  And at the same time, those that are having symptoms and think it was gluten related, when it might of been just bad food or something the body just didn't agree with.

With this being, I have stopped eating out due to getting sick way too many times.  And like others, it usually involved vomiting in the middle of the night 24 hours later.  For the longest time I thought it was the meal I just ate, when in fact it was the meal 24 hours or so earlier. 

I ran my own test once by accident.  This one evening I went to chain establishment and ordered everything gluten free, and yes it came with the "don't worry, we understand and will take care of you".  However, my wife's gluten free salad had a noodle buried in the middle of it, and my gluten free rice was actually rice pilaf, I learned this after I didn't think it tasted right and had the server confirm I was given the wrong rice.  I went ahead and finished the meal, and thought within an hour I will be sick.  The night went by and I wasn't sick, I actually thought I kicked my sensitive symptoms.  Woke up the next day, and felt fine, we even planned a trip to the beach.... for awhile I forgot about the meal the night before since I wasn't sick.  Later that day I started getting a bad headache and thought I was simply hungry.  We skipped the beach, and cooked gluten-free hotdogs and buns for dinner.  Headache didn't go away, and about an hour or two after eating I was throwing up.  Had I not knowingly consumed gluten the night before I would've surely blamed the gluten-free hotdogs and buns, but it became clear to me it wasn't the meal I just ate. 

Then about a month later the exact same thing happened, I accidentally consumed a frozen burrito that was colored and labeled as the gluten-free version when it actually contained wheat.  Again 24 hours after consuming I was throwing up my latest meal.  Found the culprits in the freezer once I started back tracking. 

Then had a similar experience during our current home's remodel, I was eating out three times a day, two locations were dedicated gluten-free and occasionally a so called safe chain restaurant.  The night I didn't eat at one of the dedicated facilities I ingested gluten, because like all the other times.... 24 hours later I was throwing up the last meal I just ate.

I try to share my experiences with those that have celiac disease, but most of the time it falls on deaf ears.  I understand that celiac is not a one size fits all disease, however once given the diagnosis the simple instruction of "don't eat gluten" really does not cut it, and gives the new member to the celiac disease community a false sense of accomplishment, especially when eating out or at gatherings.

Hopefully, one day we can all live a "normal" life with this disease, and I am hopefully when I learn about studies like this one.  PLEASE keep up the good work, because awareness is everything!    

Gosh I don’t feel sick or have to rush to the bathroom! I sometimes get sharp stomach pains about an hour later but mostly I just feel “off”, foggy brained and very lethargic. I sleep a lot for a few days. Sometimes the symptoms last for a whole week. I often get mouth and tongue blisters immediately after I’ve accidentally ingested gluten or eaten too many gluten-free prepared foods in a day (therefore getting more than I ought to). 

I’d like a sure fire way to know but I can’t imagine how. 

Takes 3 full days for me to get the major symptoms. Though sometimes (depending on "how full my bucket is") I'll get diarrhea the same day. Overall, though, my symptoms manifest on the third day and will then last until the seventh to tenth day.  (It also takes forever for my novacaine to take effect, and when it does it only lasts a short period of time. So I have a strange metabolism.) 

This is a "small" study by mainstream doctors. they never care how the patient feels so they are trying to "prove" it.

My full time job is to remain healthy physically and mentally. I HATE NOT KNOWING if I have been exposed to gluten, if I'm just crazy, or do I potentially have a GI virus and am contagious? Stress can cause loose stools, but celiac is different, right? Wait, but what if it was just a little gluten? How much gluten does it take to make CeliacSad sick? How did I go from 9 months struggling with hard stools to the familiar stomach nausea, and an urgent need to be close to the toilet? How many days does a gluten exposed CeliacSad continue to be Celiac sick? If stress related, why wasn't the onset during "personal crisis here" last week. The only thing, ONLY thing different in my life was hot cocoa and a gluten free blonde brownie at Powell's and I almost never eat food away from home. I wanted to try something nice. I know my intestines are inflamed because I'm shown as gained weight, and I look just a little distended, but anything causing loose stools will do that. Do virus cause the flatulence?  I HATE NOT KNOWING!!!!!  I think the insanity of being diagnosed and complete failure of fallow up and treatment is a disgusting shame on the entire medical field. I was diagnosed 3-4 years ago after 2 years of ignoring how sick I was. It was a routine colonoscopy that diagnosed me, then the blood test...wait, 2 years of celiac symptoms and a blood test would have diagnosed me? No, research says only colonoscopy. Okay, then why was a blood test done one year later and my primary announce, "Your labs are back, you are no longer Celiac." If I weren't as experience as I am I could have ended up very sick.  1) Small intestinal wall .... basically bald and useless. 2) I am strict no gluten, had some on my hands and became sick for over a weak-more than one way to get gluten into the system! 3) a blood test said good girl, you don't eat gluten. Dr said you don't have Celiac. How _____was that? So, must self advocate..how? 4) No research as to whether our intestinal walls that were damaged recover. That's not cool, but could explain why I'm not absorbing Vit D? IDK :-[  (5) I've not been blood tested again? Wait, what if my medications have started exposing me and these low lying symptoms and sometimes larger flare ups are damaging my intestines. Shouldn't someone be checking this? 6) I can't test myself at home to see if I'm dealing with celiac, or another cause of sudden onset ie: contagion. What to professionals say...there is no way to tell? I'm so happy their is a NYC apartment sized space station but no one can answer any questions about a basic autoimmune system that actually could destroy my ability to take in nutrients (sarcasm might be in evidence.... I would like both). 

@CeliacSad:   ❤️