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
 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. 

Link to comment
Share on other sites
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:

 

 

Link to comment
Share on other sites

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

  • 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. Josh8282
      - Josh8282 replied to Josh8282's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Question

      Are there any brands that are certified gluten free
    2. cristiana
      - cristiana replied to Louise Broughton's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Louise

      PS You asked about severe symptoms. Yes, I can tell you that the one and only time I have taken a really major gluten hit in recent times I had chills, sweats, vomited and thought I was going to pass out. I also felt my heartbeat was affected. I was really concerned at the severity of the reaction. And that was down to eating one piece of homemade...
    3. cristiana
      - cristiana replied to Louise Broughton's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Louise

      Hi @Louise Broughton Fellow Brit here! I am sorry to hear of your health issues. If I may chip in here, I think it might be worth your while at least having the blood test to see if you have raised antibodies. Whilst I agree under ideal circumstances people need to eat gluten for a period before both the blood test and endoscopy, it could well...
    4. Scott Adams
      - Scott Adams replied to Louise Broughton's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Louise

      Welcome to the forum! I’m sorry to hear about everything you’ve been going through—your symptoms sound so intense and scary. That reaction must have been very hard to endure, and it’s incredible that you’ve taken the steps to manage your health by going gluten-free. It’s not uncommon for some people’s gluten sensitivities to escalate into celiac diseas...
    5. Scott Adams
      - Scott Adams replied to Juliaaub15's topic in Super Sensitive People
      1

      Celiac Journey

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


  • Member Statistics

    • Total Members
      125,655
    • Most Online (within 30 mins)
      7,748
    Linda Walker
    Newest Member
    Linda Walker
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Josh8282
      Question

      By Josh8282 · Posted

      Are there any brands that are certified gluten free 
    • cristiana
      Louise

      By cristiana · Posted

      PS  You asked about severe symptoms.  Yes, I can tell you that the one and only time I have taken a really major gluten hit in recent times I had chills, sweats, vomited and thought I was going to pass out.  I also felt my heartbeat was affected.  I was really concerned at the severity of the reaction. And that was down to eating one piece of homemade fruitcake - a relative of mine had made me a lovely cake but thought all Dove flour was gluten-free, it isn't, they also do organic flour!   
    • cristiana
      Louise

      By cristiana · Posted

      Hi @Louise Broughton Fellow Brit here! I am sorry to hear of your health issues. If I may chip in here, I think it might be worth your while at least having the blood test to see if you have raised antibodies. Whilst I agree under ideal circumstances people need to eat gluten for a period before both the blood test and endoscopy, it could well be that your antibodies are still raised enough to show that you are a coeliac.  I gave up gluten in 2013 and it took around 8 years before my blood tests were normal again, and I was very strict with my diet. To save time I've just copied this over from a recent post on another thread and adapted it for you - forgive me, but the advice is almost the same I have just given to another UK coeliac whose daughter has been having issues: Generally speaking most UK coeliacs will get a lot of help from the NHS, such as a nutritionist, annual blood tests and reviews with a gastroenterologist to check for dietary compliance and any complications that can arise from coeliac disease, monitoring for osteopenia/porosis, which is something that coeliacs can be prone to, extra vaccinations where required, and in some regions of the UK, gluten-free staple foodstuffs on prescription.  Also, it has been my experience that once being on the books of a gastroenterologist means I have been able to make appointments direct with the hospital to see one, rather than being re-referred by a GP which saves so much time. If for some reason your are finding it to get tested under the NHS you may wish to think of one other option: going private just for the diagnosis.  I did this, with a Nuffield based gastroenterologist, who also works for the NHS.  This sped up the diagnosis process by a few months and once diagnosed by him, he offered to put me straight into the NHS for a nutritionist and the other benefits listed above.  If interested, you can ring their offices and find out how much it will cost.  Usually their secretaries are very conversant with the system so should be able to give you the info you require. I hope this may be of help. Cristiana    
    • Scott Adams
      Louise

      By Scott Adams · Posted

      Welcome to the forum! I’m sorry to hear about everything you’ve been going through—your symptoms sound so intense and scary. That reaction must have been very hard to endure, and it’s incredible that you’ve taken the steps to manage your health by going gluten-free. It’s not uncommon for some people’s gluten sensitivities to escalate into celiac disease, especially after major physical stressors like medications or other health conditions. Your symptoms after accidental gluten exposure—abdominal pain, bloating, diarrhea, and vomiting—are shared by many here, and you’re not alone in avoiding the six-week gluten challenge before testing. Many people decide against it due to how unwell it makes them feel. I completely understand your caution around eating out; dining can sometimes feel like a gamble, even with "gluten-free" items on the menu. For situations like the sourdough mix-up, some people find it helpful to chat directly with the chef or request packaging info if available. It doesn’t guarantee safety, but it sometimes helps. Have you tried keeping a food diary? Also, if your symptoms get intense again, don’t hesitate to consult with a doctor just to keep an eye on your overall health, especially with the fainting spells you experienced. This article regarding accidental gluten exposure, and the comments below it, may be helpful:   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.):    
    • Scott Adams
      Celiac Journey

      By 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 New...