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.

  • 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. - Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders
      5

      Basic metabolic panel results - more flags

    2. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    3. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    4. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,371
    • Most Online (within 30 mins)
      7,748

    Susan Blodgett
    Newest Member
    Susan Blodgett
    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

    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
×
×
  • 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.