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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.