Mind Games

[cait]

I went gluten-free after years of chronic pain and fatigue just to see if it would help, since nothing else has. My dad has celiac, so it was always in the back of my mind, though my tests were negative. It helped. Remarkably. It seems that I'm becoming more and more sensitive to trace amounts of gluten, which I know is normal. But discovering this means that I've been feeling crappy a lot. On Saturday I ate a salad with peppers that were chopped on an old cutting board that certainly had been used for bread more than once in its life (I wasn't at home and decided to risk it). I've felt lousy every since.

And yet, I can't shake this annoying self-doubt since I never had a positive test. Part of me is still not convinced that I really, truly am gluten intolerant/celiac. Like I'm making it up or something. Or that all the improvements and lapses have been coincidence, and there's something else responsible for it all. And, I think, at times that makes it harder to be firm about what I can or can't have without feeling like I'm being a terrible hypochondriac or imposing horribly on someone. Or I feel like people think I'm just a crazy health nut trying out the latest fad.

Is this just another one of those things that takes time? Will I eventually believe this and trust myself? Or am I just hopeless and crazy? Also, is there anything I can do when I run into yet another thing that makes me feel like crap? Taking a long time to feel better this time.

[Takala]

One of the symptoms of being glutened is ..... a fuzzier thinking process.

One of the symptoms of true gluten intolerance and/or celiac is that if you give it up, you do become more sensitive to trace amounts over time.

Q. Is there anything I can do ?

A. Yeah. Don't let socializing be an excuse for making yourself sick. There is the accidental glutening where you and everyone makes the best possible effort, and somehow it happens anyway (like the manufacturer apparently mislabels a bad batch of gluten free that makes you sick, or the spouse has it on his hands and then does not think.... ) and then there is risk- taking because you're interacting with the glutenoids. Sometimes it has consequences, and sometimes it does not.

There is a terrific pressure in our society to conform. Your long term survival, because you are in the class of a health issue minority, depends on whether or not you can stand up to that pressure.

[Di2011]

HI Cait,

I think you are feeling 'normal'.. under the circumstances. I'm waiting to hear about my first blood test and hope it will be positive because a negative is not going to be easy to handle(actually harder for my Mum who is a doubter). In the moments (many of them!!) when my brain starts to go like a crazy rollercoaster I tell myself the result won't matter. I'm sick, insanely itchy but not as bad as I was until a couple of days ago (No wheat since the blood test on Friday). So I think I will probably scrap the glutens even if it is negative. It will be nice to feel okay for a while

Have you had/Can you have a good talk to your Dad about how he has coped with the Disease and the change in lifestyle?

I don't know anyone personally who has it which is why reading posts here has been some comfort.

[anabananakins]

I think that even if your tests were negative, with a dad with celiac there's a really good chance that you do have it and the tests were wrong. Or maybe they'd never come positive but you do have a clear reaction. Don't beat yourself up over it. We have a tendency to give more validation to an official diagnosis, but I think a diagnosis is very often stating the obvious, we just don't trust ourselves to be able to do that. You got better when you went gluten free, you feel sick if you get contaminated, you have a family history of celiac disease.

I understand where the self-doubt comes from because I tested negative and even my genetic testing didn't indicate celiac. Meh, whatever. I feel amazingly better not eating it and a trace makes me double-over in pain. A year gluten free and that's enough for me. The confidence definitely took time to develop, especially when people specifically ask me if I have celiac disease. My stock response "no, strangely the tests were negative but I was encouraged to go gluten free and had an amazing response, I wouldn't eat gluten now for anything. Apparently it's quite common for the tests to be false, and since there's no drug cure, research is behind in this area". This reply tends to generate responses along the lines of "wow, interesting. Glad you're feeling better, good for you!". Oh, some people reply "I could never do that, I'd die if I gave up bread!" but I just smile. It's not like anyone can truly force me to eat something I don't want to eat and if it got to that (i.e., literally holding me down and shoving bread down my throat) well, I'd be making a nice phone call to the police ;-)

It sounds like now is the time to be more careful about cross contamination. Ditch those chopping boards and anything else that could be a culprit. If there's a chance that things like baking powder have been contaminated, give them away. I hope you feel better soon.

[Harpgirl]

I'm still waiting for my test results, but even if they come back negative, I'm still convinced I have celiac. Going gluten free has helped with my pain tremendously and as I read further, so many other symptoms are fitting.

A false negative is very common, it can even be caused by a lab tech who hasn't seen the celiac test before and runs it wrong. Apparently, it's not a common blood test, most techs have little experience with it.

[Diane-in-FL]

One of the symptoms of being glutened is ..... a fuzzier thinking process.

One of the symptoms of true gluten intolerance and/or celiac is that if you give it up, you do become more sensitive to trace amounts over time.

Q. Is there anything I can do ?

A. Yeah. Don't let socializing be an excuse for making yourself sick. There is the accidental glutening where you and everyone makes the best possible effort, and somehow it happens anyway (like the manufacturer apparently mislabels a bad batch of gluten free that makes you sick, or the spouse has it on his hands and then does not think.... ) and then there is risk- taking because you're interacting with the glutenoids. Sometimes it has consequences, and sometimes it does not.

There is a terrific pressure in our society to conform. Your long term survival, because you are in the class of a health issue minority, depends on whether or not you can stand up to that pressure.

Interacting with gluenoids.......love it! How clever!

[Lori2]

Having a negative celiac panel always made me question myself. However, I don't have a problem now after reading this study published this spring. I thought celiac.com had an article about it, but I can't find it now.

"Divergence of gut permeability and mucosal immune gene expression in two gluten-associated conditions: celiac disease and gluten sensitivity"

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[sandsurfgirl]

Were you gluten light when you got tested? My son who is 7 was negative on blood about 6 months ago but he ate a lot of what I ate gluten free. He chose to go gluten free cuz he was sick of being sick. Now trace CC gets him bad. So... he is a celiac. People don't get 3 days of diarrhea from one tiny milky way bite size like my son did at Halloween if they don't have celiac. You wouldn't get positive results from the diet if you didn't have celiac.

My husband is not celiac. Gluten doesn't bother him and going gluten light cuz our house is gluten free has had no effect on him at all.

You have celiac . Embrace it. Own it. You don't want to eat gluten again and make yourself sick enough to get that positive test.