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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748

    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    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
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.