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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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    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
    • trents
      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.
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