Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Getting Over The Fear


EmiPark210

Recommended Posts

EmiPark210 Contributor

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. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

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.

Adalaide Mentor

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.

Pegleg84 Collaborator

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!

Adalaide Mentor

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.

EmiPark210 Contributor

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.

Adalaide Mentor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



pretty in paleo Apprentice

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.

mcarmazi Newbie

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.

Marie1976 Enthusiast

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. ;) 

Deaminated Marcus Apprentice

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,669
    • Most Online (within 30 mins)
      7,748

    CDR40
    Newest Member
    CDR40
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.