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

Glutened- Advise


Kathleen Smith

Recommended Posts

Kathleen Smith Contributor

Hi Everyone!

I have been gluten free for a little of a year. The first couple months was alot of learning. At 6 months my numbers had gone down alot but i still had antibodies from just not knowing cross contamination and such. I'm sure many of us had these issues in the begining.

The next 6 months were great. I learned more and was being super strict. I never ate out either. My numbers fell low and not antigens as my GI doctor wanted.

I actaully now have an appt at the Celiac Research Center at the University of Columbia in NYC! I live close and thought it would be a good idea to go talk to the experts (although my GI doctor is great and I will continue to check in with her).

The thing is, this month I traveled for work ALOT (I packed food that I could --but my lunches got all water logged) and I got glutened twice at the hotel. They tried to be very accomadating and were for the most part (maybe it was cross contamination who knows). Then on Saturday my uncle made me a special gluten free lasagna at this family function and i ate. It was great!! I felt fine. About two hours later I had another tiny slice. Snacked on almonds and fresh fruit too. I had bloating at first and then a couple hours later had BAD cramping ......

This weekend I have to go to dinner twice! Both Gluten Free Rest (Charlie Browns and some other place, but I talked to the Chef and manager already)

DO I STILL GO TO THE CELIAC CENTER (end of MAY) or wait??? I dont want them to think I was cheating! My numbers were so good last time and I am worried they wont be now??

Any advice appreciated...


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



Celiac.com Sponsor (A8-M):



Cindysilkid Newbie

Hi there. Are you sure your symptoms are because you were glutened? Could be that you have developed a sensitivity to something else such as lactose or nightshades(tomatoes etc.) alot of us here have found other foods we can't eat anymore after going gluten free. I would double check all your Uncles ingredients to look for possible gluten and if you don't find any then it could be the moz cheese or tomatoes...

Skylark Collaborator

Did the almonds come out of a bulk bin, or were they a brand like Emerald that doesn't use dedicated lines? I only eat Diamond branded almonds because I've had a lot of issues with CC eating nuts.

Personally, I wouldn't skip the chance to go see experts even if I got glutened by mistake.

ravenwoodglass Mentor

I would go and just let them know what happened. I am sure they will be understanding.

Kathleen Smith Contributor

Thanks everyone! I will go, it would be stupid not to. Dont know why I actually feel embarassed if my numbers go up from being glutened. But I guess in this world "glutening" will happen on occassion no matter how good you try to be. I didnt want them to think I was being a "non compliant" celiac patient.

Does anyone know if you are gluten free for say 5 years and healing and feeling good but you do accidentally get glutened once or twice a year like when traveling for something or whatever......how much damage does that do to your villa and scaloping??

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. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,814
    • Most Online (within 30 mins)
      7,748

    ColbyBowlin
    Newest Member
    ColbyBowlin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  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.):    
×
×
  • 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.