Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Celiac Journey

Juliaaub15

By Juliaaub15
in Super Sensitive People

 Share

Recommended Posts

Juliaaub15 Newbie
Juliaaub15
Posted

Hi everyone! My name is Julia, and I was diagnosed with celiacs disease a little over a year ago. Let me say this, this year has been one hell of a ride. I feel like I keep making the same mistakes. My doctor said, "It'll get better, you just have to eat 100% gluten free". Now, I have discovered I am the symptomatic kind. Cross contamination is a bigggg no-no for me. I can't go out to eat, more like I am terrified to eat out because it seems like no one knows what gluten is. Or the severity of it. How long did it take for some to finally get the routine down? I just feel like I keep making the same mistakes over and over again. I want to feel good in my body like I once did. I don't want to feel bloated, and have a rollercoaster ride for bowel movements. It was halloween yesterday and I was working, so of course I had a couple of candies my coworkers brought it. I though reese's were gluten free, and they are, but I just learned that the holiday shaped ones are not (go figure). I guess they put flour in the molds so the candies can pop out? I don't know. Can we literally only put things in our body if it says it's gluten free on the package? Or homemade? I am a 22 year old, who likes to have a social life. And I feel like everyone my age likes to go out, eat, drink, have a good time. But I can't. It seems like such a struggle to find places I can actually trust won't make me sick. How long did this journey of finally being healthy again kick in for you guys? Do you only eat things that say are gluten free? I don't know what I'm doing wrong anymore. 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! It took me 1-2 years to figure out the diet, but there is a lot more info now that is available so you should be able to do this faster. 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

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.

This article may be helpful:

 

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,751
    • Most Online (within 30 mins)
      7,748
    Lubette121
    Newest Member
    Lubette121
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Parkrunner
      I’m terrified it’s too late for me😭

      By Parkrunner · Posted

      I probably had celiac for 40 years, late 20s to late 60s, before being diagnosed.  I was a runner and had mild intestinal symptoms most of the time.  There was a couple of months in my late 40s where I had significant diarrhea every day for 6 weeks.  Saw two PCPs about it and celiac wasn't on their radar.  In my 30s, 40s, 50s, and 60s I had insomnia, hot flashes, night sweats, muscle cramps, muscle twitching, and cardiac arrhythmia.  It took osteoporosis and fractured vertebrae before I got diagnosed.  Long term undiagnosed celiac will lead to osteoporosis. Once you go gluten-free, symptoms should away eventually.  But you may have other food intolerances.  I happen to be lactose intolerant...
    • Kathleen Mostek
      FDA says that most drugs are gluten-free???

      By Kathleen Mostek · Posted

      Scott, I used the AI app Perplexity. I did use your recommendation for research as well, however one med was not the color or shape, after being outsourced to India. I called Blue Cross, spoke to a pharmacist, he also did not have the correct description of the drug from India! 37 additives!
    • Scott Adams
      Previous Biopsy Results

      By Scott Adams · Posted

      Your situation is incredibly frustrating and emotionally draining, especially with the conflicting biopsy results, unclear diagnosis, and the added stress of personal losses. Given your DQ2.5 homozygous status, family history of celiac, and past biopsy findings (damaged villi, ulcers, lymphangiectasia), the evidence strongly suggests celiac disease—despite the initial doctor’s dismissal. The nurse practitioner’s call likely reflected the biopsy’s concerning details, even if not formally labeled "celiac." Your severe reactions to gluten, including weight loss, nausea, and bloating, further support this. The gluten challenge is notoriously difficult, especially for sensitive individuals, and your physical and...
    • Scott Adams
      Immediate Reaction

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
    • Scott Adams
      NCGS Diagnosis

      By Scott Adams · Posted

      It sounds like you're dealing with a severe non-celiac gluten sensitivity (NCGS) that significantly impacts your neurological and musculoskeletal systems, despite testing negative for celiac disease. Your sensitivity is so pronounced that even trace amounts of wheat trigger debilitating symptoms, including nerve pain, cognitive issues, and inflammation. Adopting a strict whole-food, gluten-free diet has been crucial for your recovery, allowing your nerves to heal. While the exact cause remains unclear (whether it's gluten, GMOs, or another component in processed foods), your reproducible reactions confirm a real and innate intolerance. It’s frustrating that NCGS is poorly...
×
×
  • Create New...