Celiac Patients Are Bad at Judging Gluten Exposure Based on Symptoms

The article said the study was small. From what I've learned, all respond differently to exposure. However, one would think, if a person with celiacs has ingested gluten, they would know. I know but my symptoms are different and have taken a good year to figure out the cycle. 

I really wish research would focus on a method to determine if gluten is in the food we are about to eat.  A litmus paper?  But if that is not possible, then an accurate saliva or stool sample to keep watch on whether we are getting gluten.  The focus on a vaccine or something that will allow us to eat food that may have bits of gluten would not be my first choice (I guess that would be similar to us taking Lactaid since we cannot produce the enzymes needed)...

Rather than turn us into a pill popping bunch, I hope someday we can just reliably know if we are eating untainted food.  

As for the study, 14 people doesn't sound like a large study.  And, were the celiac group all symptom-free to begin with, intestines healed, and stable on a gluten-free diet (so that any reactions would stand out as new) or were their intestines still in the healing stage?   

I too am one of those who did not know they had Celiac's or even suspected it based on gastro symptoms. It was discovered "accidentally" through an upper GI endoscopy for an unrelated reason. I had no idea that something was amiss until AFTER they did a biopsy and blood work (TTG > 100 for me)...since that diagnosis 18 months ago and being gluten-free since then other issues I was having (neuropathy) have subsided but as I never really experienced serious gastro symptoms I am pretty sure that I would not notice if I ate something "contaminated" with gluten. Despite being careful, I really would like a quick and cheap way to confirm some things before I eat them!

Nima Sensor detects gluten in food. Watch some Youtube videos and see if it's right for you. I have two of them.

On 11/19/2018 at 7:50 PM, Guest Mark B said:

Some form of home test would be awesome.  I have felt terrible the last two days.  I assume I got some gluten.  It would be great if there was a way to easily tell.  

On 11/21/2018 at 6:33 AM, catherine abercromby said:

I do not have any symptoms when I eat gluten, only found out because of a blood test and I wasn't absorbing any vitamins. They gave me supplements for a year and when tested results were lower, that's when they tested me for celiac and sure enough it was. So how would I know when I felt perfectly normal?

No symptoms at all for me either. No suppliments taken.   But going gluten-free reduced my blood numbers from astronomical to normal in 5 months. gluten-free worked for me.  Diagnosed with Celiac 6 months ago.

3 hours ago, Guest Jenny said:

I really wish research would focus on a method to determine if gluten is in the food we are about to eat.  A litmus paper?  But if that is not possible, then an accurate saliva or stool sample to keep watch on whether we are getting gluten.  The focus on a vaccine or something that will allow us to eat food that may have bits of gluten would not be my first choice (I guess that would be similar to us taking Lactaid since we cannot produce the enzymes needed)...

Rather than turn us into a pill popping bunch, I hope someday we can just reliably know if we are eating untainted food.  

As for the study, 14 people doesn't sound like a large study.  And, were the celiac group all symptom-free to begin with, intestines healed, and stable on a gluten-free diet (so that any reactions would stand out as new) or were their intestines still in the healing stage?   

They have the Nima, and EZ-Gluten for testing foods, it is hit and miss, you need a varied sample including the parts that touched the cooking surfaces, and multiple ingredients. These work best with blended meals, soups, stews, and testing the bulk spices, flours, etc each before being combined so you can get a bit of each....I test bulk samples of food used in my catering and personal food this way.

They have something called Gluten Detective, that uses stool and urine samples to test to see if you really have consumed any gluten.

They have GlidenX a enzyme that breaks down gluten...it can reduce the amount that makes it through the tract and minimize the reactions and limit down time...not a miracle pill but at least it helps a bit.


Over all I must say, I have to write down my symptoms, I have many other health issues and gluten is not my only enemy as I imagine it is for many celiacs. We do not always know if it was gluten or something else we reacted to....I can get pain, and vomiting from other things, but my ataxia is a gluten only reaction but requires a decent amount to trigger. Early on before finding my other food issues....I blamed gluten for everything wrongly...did not know then of the issues with other foods.

Another thing to consider is many celiacs have much less reactions or no reactions and it only shows up mildly or days later. Finding out what caused it can tricky for them.

I get severe abdominal pain, body aches & a headache within hours; I also have the same reaction with rice, so I avoid that and the so-called "gluten free" food they sell in the grocery & health food stores as most of them contain rice flour. If those placebos had rice flour in them it is possible that the people that got them could also be rice intolerant.

Yes, I wish there were some sort of home tests or Nima sensors etc. that insurance would pay for!

I don't have vomiting or diarrhea but I feel terrible, can't get out of bed, have terrible headaches from time to time and no way of knowing if I was exposed to gluten or reacting to trace gluten or something else all together.

I start feeling it about 1.5 hours after ingestion, then at around the two hour mark I start vomiting and go into shock...passing out, sweating, fireworks are going off in my head.  Takes me until the next day to recover and I am just worn out.  Last time it was so bad my significant other was ready to call 911. He thought I was going to lose consciousness.  It is just SO miserable.

On 11/21/2018 at 12:30 PM, Guest Carol b said:

I would know right away. I’m running to the bathroom and the I break out severely in hives all over my face arms and legs. I also get very nauseous sometimes I throw up but mostly it’s the break outs and the other end for me.   Something with my allergy to soy.  I def know when I have been.  I say be aware of how much soy u r eating in your gluten-free foods as that’s how I developed that allergy.  Know that u can get more than one autoimmune disorder once u have two or more more I was just diagnosed with my fifth. Get to know your body when u feel good and bad I’ve learned to that over the yrs of when my autoimmune disorders started 24 yrs ago. Would be awesome if there were better ways of knowing when u really were contaminated so u could get it dealt with. 

Hives suggests you have dermititis herpitformis as well as coeliac disease. Interesting.

I also have DH, so if I ingest gluten, within 20-30 minutes I am itching and feeling stinging situation that continues into breakouts. I usually go ahead and take benedryl to somewhat calm it, but will still have skin issues for days, just less intense. The digestive issues come 10-12 hours later usually.

I also know almost immediately if I've ate gluten. I get horrible but pain, very nauseous and my even vomit of it's enough. I also get flushed and my whole demeanor changes moments after. But apparently we have no idea?? I think it all depends on your sensitivity level.