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

Lost! CC Confusion!


JesLin

Recommended Posts

JesLin Rookie

Hi all! I am new to this Ceilac thing and am so thankful for this site! I was diagnosed just this week and have since been reading post after post trying to comprehend the road ahead of me.

Like others when newly diagnosed, I am actually happy since I now have an answers to all of my health problems that have been running my life the past 10 years! But I am also really really sad that I will have to change my eating habits so drastically - I think I am in the mourning/denial stage right now. Of course I will do it - health comes first! But still very sad. 

My biggest question/concern centers around eating out/travelling. I am fine to skip the bun, get the gluten free pasta, order a salad without dressing and eat out a whole lot less but this whole cross contamination thing is making my head run in circles! I understand that even the slightest trace of gluten is harmful for a Celiac. I know that if there is gluten in the kitchen and the restaurant doesn't have strict rules surrounding the handling of gluten free items I could be in for some trouble. I have read in some posts that some Celiac's won't eat the potatoes in a breakfast joint cooked on the same grill as the pancakes whereas other Celiac's are fine with it. I have seen other posts and blogs where Celiac's eat out quite regularly and celebrate when a 'regular' resto has gluten free options (tho I am sure that many of those places don't guarantee or even try to avoid cross contamination!). 

I feel like since cc is such an issue for a Celiac then we can logically never ever eat out unless at a strictly gluten free place. So does this diagnosis mean I can never eat out again?? Never attend a wedding and eat the dinner? Never attend a work event? I am fine with a restricted diet but seeing as though I may never be able to eat at a social function again is what is really making this hard. Am I safe to eat out and just order a salad all the time (no dressing) or is this also a risk? Can I pick the veggies off my plate at a social event or is this a cc risk? Do I never step food in a regular restaurant again? Can I ever take a vacation again? Are Celiac's able to travel? Language barriers and cultural differences would make cc avoidance impossible! All these things are making me feel like this disease will have me under house arrest :/

Help!

 


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



Celiac.com Sponsor (A8-M):



Jmg Mentor

Hello and welcome :)

It's all overwhelming at first, but it's very early days for you. Usually in the period just after diagnosis most people are damaged so it's a good idea to spend 6 months eating whole foods and minimising eating out. That gives your body the chance to start repairing any damage. The good news is you're likely to feel better than you thought possible as you take gluten out of your diet. 

Once you're healing is under way you can begin to make informed decisions about the level of risk you're happy with and you can find out just how sensitive you are. There is no one right answer, some people are more sensitive than others or find that the longer they go gluten free the more sensitive they become. 

Of course life carries on and you will see members here preparing for holidays abroad, meals out etc. It just means you need to give some thought in advance. That may mean travelling with some safe snacks, or identifying a chain restaurant en route that you trust to prepare your meal safely.

I am far more relaxed now than when I first started on the diet. It doesn't mean I don't take precautions or take unnecessary risks, but just like crossing the road or riding a bike, life involves risk and if you tried to eliminate it completely you wouldn't have a life to protect!

If you've not yet seen it:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Best of luck!

 

 

Ennis-TX Grand Master

While CC can be a huge issues I found a few places I can trust, and I take test strips or a tester with me when I eat out. Big thing is look up reviews of places on FindMeGlutenFree app on a phone and check those out. I suggest not eating out the first few months though. But when you do ask the manager about how they will fix your food, make sure you order form the gluten-free menu. And if you can test it before eating. Simplest thing is ask unseasoned, no sauces on stuff. Most places will let you bring your own sauces, seasonings, and condiments if you have health issues. I do this all the time.

While eating outside my house I bring my own meals, prefixed, If your somewhere you do not quite trust and need to fix a meal, I find using freezer paper layed out over the surface and disposable utensils work. I bring a small chef kit on vacation and trips with a griddle, knife, simple trusted seasonings and gluten-free ingredients I source form local stores. If a Microwave is available make steam pouches out of vacuum seal bags preseason-ed and marinated just poke holes in it and zap. Or they make all kind of microwave cook ware now for steaming foods, cooking eggs, bacon, etc. So you can cook so much easier now outside of hte house. Whole foods and fresh produce can be sourced just about anywhere and are nice and simple alternative raw.

I will share a page of a bunch of gluten-free alternatives, places to order foods, and how to get them at local grocery store if you prefer. We do suggest Whole foods only for the first few months to jump start the healing process, and only eat stuff certified gluten-free to avoid any issues and til you master label reading.

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,205
    • Most Online (within 30 mins)
      7,748

    Sarahmegan
    Newest Member
    Sarahmegan
    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

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.