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How Long Are You Binned After A Glutening?


Leper Messiah

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bridgetm Enthusiast

I've been having those carb cravings this week. Last week I was hit by cross-contamination probably everyday thanks to the cafeteria <_< and was in pain. This week it was constipation (I don't get D often either) and constant hunger pangs. I've been eating a lot of cereal, trail mix bars and wafer cookies. Today I finally feel like my system is moving just a little bit.


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Leper Messiah Apprentice

You know, I used to have the brain fog constantly, but now I don't notice it as much when I take an accidental hit. I think that for me it was a cumulative effect. A small hit is enough to pull up the more physical symptoms but doesn't take down the whole brain with it. I wonder about the carb hunger. I remember being hungry ALL the time pre-gluten-free, and I would go and pour myself another bowl of mini-wheats cereal. (sigh) I don't really crave carbs anymore. In fact, if I eat too much sugar or starch, my blood sugar goes wonky. I used to crave them a lot, though.

How long you been gluten-free i-geek?

bridgetm Enthusiast

Just an update: Those symptoms that I thought were a second wave after that week of recurring CC were actually a seperate reaction... to Dermatone sunblock. I thought the break out on my face, neck and arms was an allergic reaction that I've experienced before to various sunscreens, but I finally took a closer look at the label last night and guess what I found? Tocopheryl acetate. The rash must have been DH. That tube of my favorite sunblock ever is now in the trash.

i-geek Rookie

How long you been gluten-free i-geek?

Four months this weekend.

Shannonlass Apprentice

Wow guys. I really feel for you all. Maybe because I am a newby (9 weeks gluten free today!) but I don't seem to be taking a reaction at all (see my other thread) It kind of has me worried though. I'm afraid I am not doing the diet properly at all and the first I will know of it will be when I get my antibodies checked in June :(

Mskedi Newbie

are you all completely down for the count for this long or are you still making it to work during this time?

I'm useless for a good four to twenty-four hours. Because of that, I've gotten into the habit of only taking risks like eating out at a new place or eating something a friend prepared on Friday nights. That way I won't miss work. I got hit pretty bad this past Friday night, actually, and Saturday morning was no fun. It's still messing with me now, but I'm functional.

Skylark Collaborator

I get a day of GI symptoms and starting about 24 hours later a couple days of brain fog, anxiety, and depression. Not pleasant at all.


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    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
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