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
afitgirl
Posted

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
BlessedMommy
Posted

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
GF Lover
Posted

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
cyclinglady
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,112
    • Most Online (within 30 mins)
      7,748
    tomhaley
    Newest Member
    tomhaley
    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
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      So far 3 months in - worsening symptoms. I have had the worst constipation in my life and I am primarily eating naturally gluten-free foods like potatoes, eggs, salad with homemade dressing, corn tortillas, etc. I hate gluten-free bread and pasta so I don't eat it. Occasionally I eat gluten-free almond flour crackers. As stated in the post, I don't have any vitamin deficiency. I was already tested.
×
×
  • 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.