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... But No Idea How And When?

shimo

By shimo
in Coping with Celiac Disease

Recommended Posts

shimo Rookie
shimo
Posted

Hi there,

I guess I've been glutened because my symptoms have somewhat restarted lightly (D, few cramps and big time irritability).

I haven't had anything new, really. I have been extra careful with everything I eat.

The only things I have added to my diet are cookies from Schar, and also a few other things from them such as pasta (I used Glutano only until now and was feeling fine).

Any idea? I did not have anything not gluten free, seriously. Actually I do not have anything at home that is not gluten free. I got rid of everything. Plus I do not eat out at all. I only drink coffee outside.

My doctor also prescribed me a few vitamins and as he believes I might also have bacterial overgrowth, I'm taking pills to oxygenate the whole digestive system, digestive enzymes and a few others that I really do not know what they are for (i take 8 pills per meal total). Now I presume he knew what he was doing, most of those pills say they are fine for celiacs and those that have no information on that whatsoever say that they are free of allergens...

Can one of those pills be doing this?

What has been the most stupid anti-gluten reaction you have had? I heard we can get a reaction without even eating it, is this true? I just want to know what to avoid...

Thanks a lot!

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

Celiac.com Sponsor (A8-M):


wowzer Community Regular
wowzer
Posted

It wouldn't hurt to check the medication and make sure that it is gluten free. The pharmisist can do it for you or you can check www.glutenfreedrugs.com

loco-ladi Contributor
loco-ladi
Posted

I would check the pills yes, but also concider even if you only are drinking coffee outside home that still poses some risk, those little doughnut crumbs that everyone else left go everywhere. Also check shampoo, hand cream, lotions, toothpaste........ you may have done this before however someone may have changed their "recipe" I would concintrate on any "new" bottles you have opened recently.

FootballFanatic Contributor
FootballFanatic
Posted

I'm going to have to half-disagree with what wowzer said. Don't call your pharamacist, sure, some may go out of their way to call the manufacturer, but I called my pharmacist who said everything I was taking was gluten free, I have found out in the past week that 2 of those drugs are for sure not gluten free but only from calling the manufacturer.

I am about to make a posting about this in the "Post-Diagnosis" section....Since it's the weekend the pharmacutical companies and the doctor's offices are closed (so I have to wait for tomorrow to find an alternative for mine) I'm feeling crappy due to not taking it, but I know it's not safe so I'm calling first thing in the morning.

darlindeb25 Collaborator
darlindeb25
Posted

I had a pharmicist tell me he had no idea what gluten free was and that he didn't have the time to bother finding out. His boss reprimanded him for that attitude and told me from now on I would never have trouble with him again, yet now, I do not trust him. I will never use that pharmacy again. I would never trust him to actually find out if the product was safe for me. I have a different pharmacy now and he is very good with me, always very helpful, yet I do always research the medicine myself first. It is our responsibility to take care of ourselves and if we truly want to be safe, then we need to check with the maker of the drug. It's sad, but sometimes people will tell you anything, just to get you to pay and leave, they just do not understand the seriousness of the situation. Even your doctor probably has no idea if the medicine he is giving you is safe, unless he is a celiac doctor.

wowzer Community Regular
wowzer
Posted

I have had great luck with my pharmacist checking. I had her check 2 different ones. They told her they couldn't guarantee they weren't gluten free on one which I quit taking. The other was a cream that I was using for the itching and they said it wouldn't matter being a cream. The pharmacist checked further and did find out that it was safe to use.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

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

      Yeast extract

      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.
    2. trents
      - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

      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...
    3. Seabeemee
      - Seabeemee posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

      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. ...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Diagnosis, Testing & Treatment
      7

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      The link at the bottom of the article is the source: https://www.science.org/doi/10.1126/scitranslmed.adr8941
    5. trents
      - trents replied to mike101020's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      EMA Result

      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,165
    • 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

    • JoJo0611
      Yeast extract

      By JoJo0611 · Posted

      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
      Labs ? Awaiting in person follow up with my GI

      By trents · Posted

      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
      Labs ? Awaiting in person follow up with my GI

      By Seabeemee · Posted

      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.         
    • trents
      EMA Result

      By trents · Posted

      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      Violent reaction to gluten after going gluten-free?

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
×
×
  • 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.