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

It Is A Huge Deal! It Is Not A Big Deal? (My Plan)


afitgirl

Recommended Posts

afitgirl Rookie

Hi guys. 

I'm less of a spazzzz  about it now... I think.  I appreciate all the time and thought so many of you put into helping me cope one week into this diagnoses.     Now I found myself thinking, this is a huge deal!!  Wait, maybe this isn't a big deal after all.     I'm confused.   Is it what you make of it? 

The food at home is not a problem for me at all.  I'm super used to eating healthy and I'm the one that brings the veggie and fruit trays to picnics with friends.  No biggie.  My house is going gluten free and we are dumping all the cooking stuff that is plastic or wood and replacing the toaster and stuff like that.    The restaurant thing is what is making me nervous.   I've found some help with real life celiacs and they seem to tell me that you take the precautions at restaurants that you should, you don't eat food that is iffy but then you live your life.  Basically saying it was okay to order a salad and baked potato (bringing my own dressing in my purse--which I've done for years anyway) telling the wait staff your needs and then enjoy your meal.   Does that sound right?

Here is my plan.  Can I have some  thoughts on this?

Live day by day until I have:
-uterine ablation (what started this mess---scheduled June 11th)
-Meet with GI (still haven't seen her---sigh...waiting to be called with appt)
- Have endo for damage.

 

-After that, clean out kitchen and eat gluten-free 100%

-Trust labels on foods (this is a big issue for me.   So many scare me about that reading here/books and I don't want to be that way.  The real life celiac friends (2 of them) say I should trust labels)
-Find 5-6 restaurants that I feel like I can trust.  Tip well, get to know manager.

-Make it through beach trip with family/friends

-Make it through cruise in July with husband and friends (super scared of gluten-free on the carnival cruise)

-Test children

Continue this until 6-8 months from official gluten-free start.   Have new blood panel and check levels.  If negative or dropping decently continue on path.  If not, sink into deep depression.  (Not really....but I'm fearful of that).

If all goes well then I will look into another endo 12-18 months later.


Sorry for typos.   3 year old on lap.


Thoughts on any of this?
 


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



Celiac.com Sponsor (A8-M):



BlessedMommy Rising Star

Sounds like a great plan!

 

I'm glad that you are relaxing a little bit. You got this, you can do it! :)

GF Lover Rising Star

Hi guys. 

I'm less of a spazzzz  about it now... I think.  I appreciate all the time and thought so many of you put into helping me cope one week into this diagnoses.     Now I found myself thinking, this is a huge deal!!  Wait, maybe this isn't a big deal after all.     I'm confused.   Is it what you make of it? 

The food at home is not a problem for me at all.  I'm super used to eating healthy and I'm the one that brings the veggie and fruit trays to picnics with friends.  No biggie.  My house is going gluten free and we are dumping all the cooking stuff that is plastic or wood and replacing the toaster and stuff like that.    The restaurant thing is what is making me nervous.   I've found some help with real life celiacs and they seem to tell me that you take the precautions at restaurants that you should, you don't eat food that is iffy but then you live your life.  Basically saying it was okay to order a salad and baked potato (bringing my own dressing in my purse--which I've done for years anyway) telling the wait staff your needs and then enjoy your meal.   Does that sound right?

Here is my plan.  Can I have some  thoughts on this?

Live day by day until I have:

-uterine ablation (what started this mess---scheduled June 11th)

-Meet with GI (still haven't seen her---sigh...waiting to be called with appt)

- Have endo for damage.

 

-After that, clean out kitchen and eat gluten-free 100%

-Trust labels on foods (this is a big issue for me.   So many scare me about that reading here/books and I don't want to be that way.  The real life celiac friends (2 of them) say I should trust labels)

-Find 5-6 restaurants that I feel like I can trust.  Tip well, get to know manager.

-Make it through beach trip with family/friends

-Make it through cruise in July with husband and friends (super scared of gluten-free on the carnival cruise)

-Test children

Continue this until 6-8 months from official gluten-free start.   Have new blood panel and check levels.  If negative or dropping decently continue on path.  If not, sink into deep depression.  (Not really....but I'm fearful of that).

If all goes well then I will look into another endo 12-18 months later.

Sorry for typos.   3 year old on lap.

Thoughts on any of this?

 

Sounds great.  Just remember:  No croutons on the salad (don't pick them off if they forgot) and request your baked potato UN-cut (you don't know where the knife has been).  Lastly, always let them know that you have a Medical Diet (they should write that on the order) and cannot have wheat, barley and rye so the Kitchen knows to be careful of contamination.  

 

It is a big deal and not such a big deal.  The big is this is a serious disease and should be treated as such.  The not so big is living a gluten free lifestyle.  It will become your new normal and become routine.  

 

Good Luck to you.

 

Colleen

cyclinglady Grand Master

What a great plan!

I think your cruise will be fine. I notified my cruise line (RC) via email. They suggested meeting with the dining room manager as soon as we board ship. We plan on eating every meal in the dining room. We did that before we were diagnosed. I want someone to wait on me all the time! Bringing snacks with me for port stops just in case.

Heading out for the beach with 14 family and friends this weekend. We are the gluten-free family, but others have some picky eaters. Every family cooks for themselves and we share chips, ice cream, and drinks (I just put out enough and hold back some for us). With kids, it is not just CC, but sand contamination! Ugh!

It is not so bad! Glad you are feeling better.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      32

      Does anyone here also have Afib

    2. - knitty kitty replied to lehum's topic in Super Sensitive People
      9

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    3. - Scott Adams replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    4. - Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    5. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,940
    • Most Online (within 30 mins)
      7,748

    Joyce B
    Newest Member
    Joyce B
    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

    • knitty kitty
      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
    • Scott Adams
      The reaction one gets when they get glutened varies a lot from person to person.  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.):    
    • Theresa2407
      A gluten ingestion can last for many months.  Many years ago there was a celiac conference in Fl.  Everyone there got contaminated with some having difficulty 6 months to recover.  It will hit your Lympatic system and spread  through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn't checked close enough.  the Pharmacuticals change vendors all the time.
    • Hmart
      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
×
×
  • 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.