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What Does It Feel Like?


gfpirate

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gfpirate Rookie

Hi, so my non-celiac friend and I were discussing what being poisoned feels like. Granted, if you don't have the disease, it's pretty hard to try to understand what it feels like. So, just for fun, tell how you feel when you get 'glutenated'. What does is FEEL like? A knife? Pins and needles? Dull throbbing? Just for fun :)


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josh052980 Enthusiast

For all of us it's different. When I get glutened, it's like I have the stomach flu, and I get body aches as well. This goes on for 3 days to a week, depending on how much gluten I got hit with. Also, my symptoms seem to continually evolve as time goes by and I heal. The symptoms will hit me harder, but I get over them faster.

Katrala Contributor

It's different for everyone.

Reactions range from non-existent (external) to debilitating.

Personally, I fall on the lower end of the range in terms of outward symptoms. I'm foggy and have numbness. Occasional GI issues, but not always.

Skylark Collaborator

For me it's like a GI virus or mild food poisoning. Not much fun.

rosetapper23 Explorer

I have trouble sleeping, my eyes and face get swollen and puffy, I get a bad headache and brain fog, my joints hurt for almost a week, and I get horrible diarrhea that lasts about three days...and then that's followed up with constipation for another few days. I'f I'm really unlucky, I break out in Dermatitis Herpetiformis blisters all over my face, neck, foot, and hand.

Then, after about a month, I find out which nutritional deficiencies I now have to live with for a few months... or for the rest of my life.

Bubba's Mom Enthusiast

I get really hyper, followed by bloating, nausea, a gnawing pain that starts in my upper right side, and moves to the lower right, and GERD. This is followed by a cycle of D and C. AND I get real emotional...mostly angry, and have a foggy brain. It also throws my sense of balance off. :blink:

Melissa Palomo Apprentice

Bloating, nausea, pain (sometimes pain so bad I feel like I will pass out), and urgent need to use the restroom. If it's a LOT of gluten I've ingested unknowingly, I also get fatigued and foggy brained.


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mushroom Proficient

Bloating an extreme nausea for me, to the retching point.

UKGail Rookie

My head starts to swim, eyes get blurry, and I can't think straight. Migraine then starts up round the base of my skull, spreading into my neck and shoulders. I ache all over and feel like I have the flu. Limbs feel like lead weights. Zero energy. Heartburn. Then grumbly abdominal pain. Nausea. Unable to eat. 24 hours later D starts, usually bright yellow. Another 24 hours, C starts. Nausea, abdominal pain and migraine subside within a couple of days. Brainfog, heartburn, "normal" digestion, joint aches and low energy take much longer. No fun.

Metoo Enthusiast

My gluten events are different now that I am gluten free. Before gluten free I had random stomach pain that would last for hours, and just a general fogginess, and more recently vitamin D problems, which made me extremely fatiqued and foggy feeling.

Now that I am gluten free. By the next morning I break out in 1000s of blisters on my hand, which hurt intesnly. Then over the course of the week they itch/hurt, as I continue to get new ones. Then the next week the skin breaks open...then I spend the next two weeks in various stages of open raw skin. Each time I have been glutened the rash has gotten worse and bigger in pattern. This last time it took me 5 weeks to get my skin to heal!

I also consumed grain vodka once, and within 2 hours I spent the rest of the day in the bathroom with D. =(

So I don't seem to have too good of a regular pattern since being gluten free, I have only had gluten 3 times since going gluten free, 4 times if you include the vodka.

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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