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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Getting Over The Fear
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11 posts in this topic

Last night I had a dream that I just kept eating "normal" pizza, and I was terrified that when I woke up it would be true and I would be sick for the next three days. 

 

The thing is, I've had a really positive experience with my diagnosis (sorry to all the posters who have felt ostracized). All my friends and family have made every effort to try to understand what is happening and have been wonderful listeners since I got my blood test back in February. People have made sure I could eat something when they'd bring food places and even understood cross contamination (ie. "If you eat the pita chips, don't touch Emi's Pirates Booty"). The dining hall at my university makes me separate food and is willing to bring me all the containers for anything that goes into the normal food so I can personally check it. I went out to dinner last night for my 21st and got a special menu and then had a beautiful chocolate cake from a designated gluten-free facility at home. I really could not have had a more positive reaction and support.

 

So why am I so terrified all the time? I'm terrified that I'm somehow continuing to eat gluten and don't know it and am not eating enough to see drastic effects. I know my body can't have any but I seem to react a bit on a spectrum. I got glutened last week and can't identify where based on timing, which kind of started this whole fear thing. But I'm also scared in a really stressed out daze some day, I'm not going to ask or I'll just eat the full blown gluten and not heal. I am studying abroad this summer and my German isn't up to par of explaining Celiac but I will have my own apartment and requested having an extra set of cooking utensils from my apartment mates.

 

But how do you get over the fear and paranoia? I know I will always have to be diligent with what I eat, but I don't want to be terrified for the rest of my life. 

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A certain amount of fear doesnt hurt you, howevertoo much is not good either. I fully understand it.

I use baby steps, one little bit at a time.

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If a significant amount of the fear came on after the glutening, it is possible that it is not simply because you got glutened that you fear gluten. Maybe it is a part of your response to a glutening. It is normal to have responses such as anxiety and nightmares. I have responses to gluten that last 4-6 weeks, different symptoms lasting different amounts of time. Maybe just try to relax and accept that this may be a result of the damage done by the gluten, as opposed to the knowing it happened, and allow it time to pass.

 

Also, as Shadow says, I try to live with a comfortable amount of paranoia. Not so much as to be crippling, but enough as to keep me from doing stupid things.

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I think we always maintain a healthy amount of fear, or rather, suspicion, of anything potentially gluteny. That's what makes us read the label 3 times, or pass on the "I think they're gluten-free' whatever. But I know that any time I'm not feeling up to snuff, I suspect I got into something, even if I'm just having a bad day (those do happen all on their own sometimes).

 

But, as for crazy gluten dreams, I had one the other night that someone was staying at my house and decided to cook a package of ramen noodles, and I found my kitchen littered with ramen bits. Not cool!

 

Also, like Adalaide said, you might have more anxiety after getting glutened which doesn't help. I know I get much more "omg I'm never going to feel better ever ever" feeling if I've been glutened.

 

In any case, as you get more familiar with the diet it'll become second nature and you'll relax enough to not worry about it.

 

Sounds like you're doing well, though. Keep it up!

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I forgot about the single gluten nightmare I had. I was at a fair and for some reason was wandering alone and meeting my husband somewhere. I was on my way to meet him and was starving. I passed by a corn dog stand and thought that sounds delicious! I had eaten half of one before I remembered that corn dog doesn't mean gluten free dog.

 

I woke up in a complete panic and was so worked up I couldn't get back to sleep. My heart was racing, I was sweating, I was breathing fast. Before I realized I was in bed I actually checked my mouth for food. As if it would have mattered with the stupid thing half gone.

 

This stupid nightmare was during a gluten reaction, and like I said was the only one I ever had. Normally I live with what I consider a healthy amount of paranoia. I think we each need to find our own comfort level with that and just roll with it.

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I had the eating gluten nightmare for the third night in a row. I'm really scared that I've missed a source of gluten and am still eating it. Or that my dish washing system with my roommate isn't working somehow and I'm getting cross contamination.

I'm at a naturally stressful part of the year and I wonder if all of that is being kinda projected on my gluten issues. I got stressed enough on Tuesday to where I had to take an anti-spasm pill to quiet my colon before my oral test in Russian and I thought that would be one of the issues that would be fixed by going gluten free. I haven't tried cutting out other foods (and I know it could help) but I've already cut out so much else leading up to the diagnosis. I'm a bit at a loss of what to do.

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While it took me weeks to stop with the constant alternating C and D, it took me months to stop with the sudden cases of emergency D. (Which can also be caused entirely by stress and anxiety, aside from gluten.) It took me a year until I was going on a normal, regular schedule at more or less the same time every day. This isn't a race, its a marathon. We'll each heal at our own pace but none of us are sprinting to a finish line.

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I have had those dreams too lol. The ones where I take a big bite of something breaded, and don't even taste it because I am overwhelmed with horror at the error I just made ! Then fear of what symptoms I will get.

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Emily: I am in the same boat with you. I found out in september and it took me until Feburary to feel "normal." But then I had two weeks in march where I felt sick again then got better and now the last ten days i have sick yet again.......what I ate, i have no idea. I took the first "relapse" ok, but now I am going crazy. I feel like I am putting in so much effort with very little reward. The one thing I can think of is I drank "distilled vodka" after extensively researching alcohol  but its the only thing that proceeded both episodes. So who knows maybe its IBS on top of everything else like other people have suggessted or maybe I have to just except that is occasionally going to happen to me (very hard to accept) and got so upset when it happens because I am sure its not helping. But I really really do hope it will be like what adalaide was saying about this whole process being a marathon (thanks for the words of wosdom) , and I am near the end.

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Yep I have those dreams too. I guess from being paranoid all day about eating gluten, that fear gets into our dreams. Maybe do some meditation or affirmations before you go to sleep. Or at least remind yourself that you didn't eat any gluten today before you drift off. ;) 

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I had several dreams that I'm eating cookies. 

Then I'd feel the OH no! sickness,

then sometimes I'd think in the dream... well it's just a dream so I can finish the cookies.

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