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

How Do I Do This?


VioletBlue

Recommended Posts

VioletBlue Contributor

I have to travel at the end of the month. I've been trying to settle my father's estate for two years now and hopefully this will be the last action I have to take to do it. I have no choice, I have to go. It's about a three hour drive. I'll be staying with friends for five days. They are of course gluten eaters, but they want to be as accommodating as they can; they're bending over backward in fact to be helpful. I haven't been away from home since before I was diagnosed in December 06. I'm literally in a panic about it.

I can take a cooler with me, and other foods and pots and what not. There's a Trader Joe's and a Whole Foods within walking distance of their home. I know intellectually that this is doable, but I can't seem to wrap my brain around it without freaking out. This is pretty far outside my comfort zone right now.

They are dear friends and I also don't want to offend them. They're even putting up with my dog, the 82 pound Shepherd who thinks she's a Pomeranian. I worry about having to say things like "I'm sorry, but I can't scramble eggs in your non-stick frying pan because it's probably contaminated.

I could just use suggestions. Well, tranquilizers would be good too, but I don't think I'm getting those here. I'm hoping that enough common sense people will post with ideas and suggestions from their experiences so that I can alleviate some of the panic. Also suggestions on what to be careful about would be useful too. I so hope TJ's or Whole Foods stocks organic wine. I have a hunch I'm going to need it.

I am gluten intolerant, but also nightshade intolerant, allergic sweet potatoes and yams, to sunflowers and cucumbers and sulfites and sodium nitrites. Obvious snack things tend not to be an option because of the nightshades and sunflower thing, and even gluten-free baked goods are tough because I react to sulfites in cornstarch and most common types of baking powder as well as potato flour and starch.

So any suggestions are welcome.

"My mother always told me, it's okay to play with a man's mind

as long as you put it back where you got it when you're done with it."


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

they're your friends. just tell them that it's a stressful time, and that you just don't have the mental reserves to deal with the risk, or even the thought of the risk, of contamination. tell them that you're going to bring your own stuff, to make it easier. tell them - if they seem skeptical - that you realize it might seem a bit paranoid, but that there are only so many things that you can deal with at one time, and dealing with estate stuff is it for this trip, and you'll just be a little bit silly for the trip with your own pots and pans, but that's ok.

kbtoyssni Contributor

If they are insistent on getting you some food, you could suggest them having a few snacks around like fruit or eggs or individually packaged cheese.

Wonka Apprentice

Talk to them about your fears in the same way that you have expressed yourself here (the caring for your dear friends comes out loud and clear). Then bring some utensils and pans from home to enable you to cook without fear in their home.

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. - Seabeemee replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Labs ? Awaiting in person follow up with my GI

    2. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

    3. - JoJo0611 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Yeast extract

    4. - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Labs ? Awaiting in person follow up with my GI

    5. - Seabeemee posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Labs ? Awaiting in person follow up with my GI

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,166
    • Most Online (within 30 mins)
      7,748

    AmynDevyn
    Newest Member
    AmynDevyn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Seabeemee
      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
    • trents
      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
    • Seabeemee
      My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean. I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea).  I also have been diagnosed with GERD and some associated issues hence the endoscopy. I also was diagnosed with NAFLD after an abdominal CT scan in December - which surprises me because I gave up alcohol 5 years ago, workout 5 days a week, cardio / weights and cook from scratch every night. Anecdotally,  I do feel better when I do not eat a lot of carbs and have been staying away from gluten 95% of the time until my follow up.  History: I had an emergency bowel obstruction operation in August 2021 for a double closed loop obstruction, open surgery removed 40 cm of my small intestine, my appendix, cecal valve and illeocectomy. Beside the fact that this put me in the situation of no longer being able to absorb Vitamin B12  from my diet and having to  inject Vit B 12 2x a month, I also became Iron deficient and am on EOD iron to keep my levels high enough to support my Vitamin B12 injections, as well as daily folic acid. I tested positive for pernicious anemia in 2022 but most recently that same test came back negative. Negative Intrinsic Factor. My results from the biopsies showed 2nd part of Duodenum, small bowel Mildly patch increased intraepithelial lymphocytes with intact villious architecture. Comment: Duodenal biopsies with normal villous architecture and increased intrepithelial lymphocytes (Marsh I lesion) are found in 1-3% of patients undergoing duodenal biopsy, and an association with celiac disease is well established however the specificity remains low. Similar histologic findings may be seen in H pylori gastritis, NSAID and other medication use including olmesartan, bacterial overgrowth, tropical sprue and certain autoimmune disorders. So my GI ordered Labs for Celiac confirmation: Sorry I couldn’t upload a photo or pdf so typed below: TEST NAME                               IN RANGE and/or RESULTS RESULTS:  IMMUNOGLOBULIN A :           110 GLIADIN (DEAMIDATED) AB (IGG, IGA)                            <1.0 GLIADIN (DEAMIDATED) AB (IGA)                                     <1.0 GLIADIN (DEAMIDATED) AB (IGG)                                    <1.0 TISSUE TRANSGLUTAMINASE ANTIBODY, IGG, IGA TISSUE TRANSGLUTAMINASE AB, IGG                                     <1.0 TISSUE TRANSGLUTAMINASE AB, IGA                                     <1.0 INTERPRETATION: <15.0 ANTIBODY NOT DETECTED  > OR = 15.0 ANTIBODY DETECTED RESULTS: HLA TYPING FOR CELIAC DISEASE INTERPRETATION (note The patient does not have the HLA-DQ associated with celiac disease variants) More than 97% of celiac patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. Genetic counseling as needed. HLA DQ2 : NEGATIVE HLA D08: NEGATIVE HLA VARIANTS DETECTED: HLA DA1* : 01 HLA DA1* : 05 HLA DQB1*: 0301 HLA DQB1*: 0501 RESULTS REVIEWED BY: Benjamin A Hilton, Ph.D., FACMG I appreciate any input, thank you.         
×
×
  • 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.