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

The Hardest Part About Celiac For Me Is...


GFreeMO

Recommended Posts

lynnelise Apprentice

I USED to say I am so glad I got to visit New Orleans before Katrina. Now I'm glad I went before being gluten/corn free. The food was absolutely the best I ever had!

This exactly! I love New Orleans more than any place I've visited!!! I know I could make the dishes at home but it's not the same as being there and having the experience of trying all the good restaurants. Celiac makes you lose a lot the carefree attitude that makes vacation fun.

So to answer the overall question I guess what I find hardest is the constant planning and the way an unexpected hurdle can throw everything off. Like today for instance. I got called into a meeting before I had a chance to eat my breakfast...well they served donuts so it was a really bad time to be hungry. Then things get intense and they decide to work through lunch and order food in....from a pizza place I'm unfamilar with. I was way too scared to chance a salad so I just said no thanks. So that made two meals I had to suffer through. Finally I snuck out for a restroom break and scarfed down a Larabar. Normal people don't worry about that...they just enjoy donuts and pizza on the company's dime!


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



Celiac.com Sponsor (A8-M):



xjrosie Apprentice

If you are staying somewhere with a kitchen you could cook - but that's hard to find there unless its a cottage or a liberal B&B.

That's why I have hope of going back soon. My uncle still lives there....so he has a kitchen!

Look for an extended-stay hotel, I know the Holiday Inn company has one but I can't remember the name. Anyway, those hotels typically have a little larger room with a fridge, mini-stove, and microwave. The one I stayed in even had a bit larger table where my kids and I could sit down.

srall Contributor

Look for an extended-stay hotel, I know the Holiday Inn company has one but I can't remember the name. Anyway, those hotels typically have a little larger room with a fridge, mini-stove, and microwave. The one I stayed in even had a bit larger table where my kids and I could sit down.

I think this is really good advice. When we went to England last summer I made sure we had a kitchen. This trip to New Orleans we won't have the luxury, but hopefully a fridge. (The hotel is part of a convention). But in our travels we have learned to research ahead of time and book our hotel based around proximity to a Whole Foods, Outback, or nicer restaurants, a fridge or kitchen in the hotel, or even rent a house if we need to...traveling is just not at all carefree anymore.

HalfBaked Newbie

There is at least one that you can get gluten-free King Cakes, I know I get mine from a guy that is at Who Dat Cafe in Marigny neighborhood, which is just outside the Quarter. He always has different savory items and sweets as well. Talk to him, if you have special restrictions, he will go for it if he can (eg Nut Free, Soy Free, Dairy Free.) I go there regularly, and honestly I don't feel as though I'm missing out at all on the gluten-free items. The reason I found this thread was that I was looking for a gluten-free muffaletta bread recipe for Mardi Gras. At last I got to help someone find King Cakes, now back to the trawling of the internet oceans for that one special recipe...

PS, there is a restaurant in this Cafe, the same guy supplies the biscuits (Green Onion Cheddar!! Yum!) with your breakfast, and believe this... gluten-free Grillades and Grits!

Also, El Gato Negro has been extremely accomodating for me in the past, and I've not once been "Glutened." They are right off the French Market, so definitely another place to check out if visiting.

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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

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

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.