Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
Kathleen Smith

Glutened- Advise

Rate this topic

Recommended Posts

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...

Share this post

Link to post
Share on other sites

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...

Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites

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

Share this post

Link to post
Share on other sites

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??

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      Celiac Emotional Healing Support Group
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Forum Statistics

    • Total Topics
    • Total Posts
  • Who's Online (See full list)

    There are no registered users currently online

  • Forum Discussions

    Thank you GFinDC. Question. When you say, "quick rinse", can you define what is safe for us to use when washing our fruits and veggies? I know that might sound like something I should know but I am seriously taking no chances (at least not on purpose). I've been buying organic produce because I was told I needed to. Do you find that to be true or do I need to find a new nutritionist? 😉
    Hi Wade, You areright, there are lots of little gotchas out there in the gluten-filled world.  That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet.  The list of ingredients on an apple or an orange or a steak is usually real short.  So you can get out of the grocery store quicker by eating whole foods like those.  Plain frozen veggies or canned are usually safe too.  And fresh produce as long as you give it a quick rinse.
    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
  • Blog Entries

  • Blog Statistics

    • Total Blogs
    • Total Entries