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. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Pain in the right side of abdomen

    2. - Heatherisle replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      37

      Blood results

    3. - knitty kitty replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      37

      Blood results

    4. - knitty kitty replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Confused about HLA-DQ Celiac gene test result

    5. - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Pain in the right side of abdomen

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,465
    • Most Online (within 30 mins)
      7,748

    Dferares
    Newest Member
    Dferares
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Heatherisle
      Thanks for replying. She has anxiety so always thinks the worst!!!GP is going to refer her for a scan and hopefully getting bloods done this week. Have mentioned food diary to her before so will mention it again
    • Heatherisle
      She is waiting to get bloods done to check for various things including bone profile. As far as I know she does a lot of cooking from scratch, lots of veg, chicken. She’s never been a fan of processed foods like cold ham but does like bacon and will also buy gluten free sausages. Shares a flat with her friend who is aware of her coeliac. As far as I’m aware they’re very careful about cross contamination but I know it’s possible it happens from time to time
    • knitty kitty
      @Heatherisle, Has your daughter been checked for vitamin and mineral deficiencies?   A combination of Thiamine Hydrochloride (or Benfotiamine) and B12 and Pyridoxine B6 relieves pain as well as over-the-counter pain relievers.  What sort of food does she eat on the GFD?  Many gluten free processed foods?
    • knitty kitty
      Your doctor is incorrect! Your positive DQB1*02 is all you need to develop Celiac disease.  Just having one copy is sufficient to develop Celiac.   Reference: Carrier frequency of HLA-DQB1*02 allele in patients affected with celiac disease: A systematic review assessing the potential rationale of a targeted allelic genotyping as a first-line screening "...importantly, a comparable risk of celiac disease development was present in individuals carrying a double dose of HLA-DQB1*02 alleles, no matter the paired HLA-DQA1 alleles." And... "If we could consider a mass screening looking for the carrier status of HLA-DQB1*02 only, we may identify 95% of celiac disease predisposed patients and, concomitantly, rule out (with no more than a 5% error) the lifetime risk of disease in 60%-70% of the general population: These non-predisposed individuals should never receive the serological screening, unless any consistent clinical symptoms appear at some point of the existence without any other explanation." https://pmc.ncbi.nlm.nih.gov/articles/PMC7109277/ Classical celiac disease is more frequent with a double dose of HLA-DQB1*02: A systematic review with meta-analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC6375622/ Also, the Malabsorption of Celiac can cause low B vitamins (and minerals) that are related to poor oral health. The Role of Vitamin B Complex in Periodontal Disease: A Systematic Review Examining Supplementation Outcomes, Age Differences in Children and Adults, and Aesthetic Changes https://pubmed.ncbi.nlm.nih.gov/40218924/ Best wishes for your Celiac journey!
    • Scott Adams
      I can see why she’s worried, especially with a history of ovarian cysts, but it’s also very common for healing after a celiac diagnosis to take time. Even when someone is doing their best gluten-free, it can take months for inflammation to calm down, and bloating, abdominal pressure, and even back discomfort can flare during the adjustment period. The upcoming dietitian visit is a great step, since hidden gluten exposure or nutritional gaps can sometimes contribute to ongoing symptoms. That said, if the pain is persistent, worsening, or feels similar to her prior cyst symptoms, it’s reasonable to mention that to her doctor for peace of mind. It’s not uncommon for multiple things to overlap, so checking both GI and gynecologic angles can help rule things out and reduce anxiety while her body continues healing. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.    
×
×
  • 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.