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Is It Weird To React To Wheat Only Most Of The Time?

SeattleGF

By SeattleGF
in Coping with Celiac Disease

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SeattleGF Newbie
SeattleGF
Posted

Hey folks! I'm new to the boards. I'm 36 years old, mother of two. About 7 months ago I was having all kinds of physical sensations that for years I'd attributed to panic disorder and generalized anxiety disorder. Yet medications and therapy didn't work, the sensations and "attacks" were always happening, no matter how well I did the exercises or worked with my doctor. Finally my GP suggested I go off gluten, even though a blood test didn't show signs of celiac.

For about six days I felt awful, but then after that, I began to feel better, and better, and better, until finally I was almost totally without any of the previous symptoms I'd lived with for so long. Now, I do still have problems with anxiety, but they're totally unconnected to food and only happen in certain known circumstances - being stuck in traffic, for example. What used to be a constant struggle that left me housebound basically lifted. It felt miraculous, to myself and my family.

The other miraculous thing was that dairy, which I'd been unable to eat for years, I was now able to eat with abandon! It's been incredible! I haven't eaten dairy in years, and now I can eat cheese and milk without spending an hour in the bathroom or feeling sick for a day. My doctor said that she couldn't diagnose me with celiac officially, not without doing the bowel biopsy which would be a miserable thing to go through, however the fact that after six weeks of being gluten-free I was able to eat dairy strongly suggested to her that having celiac was the issue. She said I should stay off gluten for the rest of my life and be grateful.

Anyway, it's been a great 7 months, full of eating cheese again and feeling better than I have in years. So what's my question....

Well, most of the time when I get accidentally "glutened", I know it. The way I know it isn't bowel pain like most people, it's actually a rapid heart rate, a sense of being "out of it" (like a carb coma), and low-level anxiety, among other things - I even sometimes get flashes of heat, and my blood pressure will go up. Usually when this happens I end up looking back and realizing that I got glutened,either at a restaurant or from some packaged food we didn't check carefully enough.

But SOMETIMES, rarely, but it's happened, I've gotten glutened and nothing has happened. Nothing at all. This happened the other night when I poured what I thought was gluten-free pasta into the soup I was making for dinner. It's semolina pasta, which I've read has a high gluten content. I didn't realize until after I'd had a big bowl, and it was 24 hours later. I thought back through the last 24 hours, and nothing had happened. This happened a few weeks before, too, when we'd bought two packs of identical snickerdoodles at our local grocery store - one gluten-free, one not. I ended up eating three small cookies from the non-gluten-free box accidentally (we're sure it happened, my husband saw me take them from the wrong box).

So what's the deal? Is it weird to get a reaction from gluten 90% of the time, but then every so often eat a good helping of wheat or gluten and not have anything happen?

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rainer83 Newbie
rainer83
Posted

I find wheat gives me the worse reactions within about an hour of eating it if I didn't know it was in whatever I ate. I remember before I was diagnosed, Special K and Mini Wheats would have me crying in pain within an hour. Barley doesn't react as quickly, it's probably about 4 hours after I've eaten it. I found this out eating Corn Flakes, not realizing it had malted barley. It effected me for the rest of the day and a few days after though. Not as painful. I could deal with it and move on with my day. Though with wheat? No way. It's actually debilitating. I have a hard time breathing, my entire abdomen swells and I'm down for the count. I can't function at all. I know of other celiacs who have the same problem though. You're not alone.

Although I will recommend to try and stick gluten free even if it doesn't bother you. It's still doing damage to your intestines, whether you feel it or not.

flutterby Apprentice
flutterby
Posted

Although I will recommend to try and stick gluten free even if it doesn't bother you. It's still doing damage to your intestines, whether you feel it or not.

Agreed. See this video for more info:

A lot of the times I have different reactions, depending on what else I've eaten.

Even 1.5 years after going 'gluten' free, I felt great but had an episode of getting suddenly sick and having to go to the doctor, who told me ... be more careful with your diet! I was getting a lot of CC, apparently.

sahm-i-am Apprentice
sahm-i-am
Posted

I have no reactions when I eat gluten that I can see - but the silent war is going on in my small intestine. It is so hard to stay away from gluten for me, because of this, but if I don't many terrible things could happen in my future! The women in my family live well into their 90's. I don't want to break that cycle! ;)

Marz Enthusiast
Marz
Posted

The way I know it isn't bowel pain like most people, it's actually a rapid heart rate, a sense of being "out of it" (like a carb coma), and low-level anxiety, among other things - I even sometimes get flashes of heat, and my blood pressure will go up.

Wow, that's a great description of what I sometimes have! Is the reaction fairly quick for you, or does it only happen a few hours later?

I've noticed my reactions vary wildly - it can be the above symptoms, or it can be nausea and stomach pain, or cramping/pain/d. I can even have no symptoms, and then get a nasty outbreak of DH. So don't think you can really predict it unfortunately.

When I did a gluten challenge a few months ago, I didn't even get a very noticable reaction to semolina wheat (that I had 3 times a day). But I started feeling really crap and out of it, and a few days later the stomach problems started in earnest.

Do you not get any stomach problems at all? Even 3 to 5 days later (Can be very delayed depending on your system).

rainer83 Newbie
rainer83
Posted

Agreed. See this video for more info:

A lot of the times I have different reactions, depending on what else I've eaten.

Even 1.5 years after going 'gluten' free, I felt great but had an episode of getting suddenly sick and having to go to the doctor, who told me ... be more careful with your diet! I was getting a lot of CC, apparently.

Thanks for sharing the video!

Cross contamination is ridiculous. I can't believe how much of it there is in so many foods. I can't eat Quaker Oatmeal because of all the cross contamination. Even when you read the labels of things that don't have any wheat/gluten, but has been processed in a factory with it.

Skylark Collaborator
Skylark
Posted

It's inconsistent for me too. Last time I ate some wheat by mistake (got the wrong crackers) the only thing that happened was a little canker sore. I was really surprised since I've had D in the past from only fryer CC. It's really inconsistent, but I'm always glad when I make a mistake and don't pay too badly.

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