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

Last 48 Hours Before Gluten-Free Forever


EmiPark210

Recommended Posts

EmiPark210 Contributor

It's finally here! My endoscopy is on Friday at 9am. I've been doing a gluten challenge for the past three weeks to ensure that I get the positive I know is there. Even if the biopsy comes back negative, I have my blood tests and these past three weeks have been such a living hell that I'm never touching gluten again. 

 

So here I am, the last 48 hours of eating gluten. There are a lot of "lasts" as I consume the gluten-ous foods that I used to love so dearly in their full gluten form. But the part I'm most excited for is all the firsts. First week without the nausea and vertigo I seem to have developed since going back on gluten, first classes where my head is clear and my ADD symptoms disappear like they did when I was gluten free, the first experiments with new foods that I never would have approached otherwise, and for the first time in (at least) 7 years feeling 'normal.' 

 

These past three weeks have allowed me to go through the grieving process that comes with the initial diagnosis as well as making me so appreciative that I have the answer to many of my physical and psychological issues. I am so excited to be gluten-free forever. 

 

 

 

In other news, my boyfriend just set up his appointment to get tested after he's been having the same issues with pasta as I did that prompted me to get testing done. 


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

:) Enjoy a last doughnut or cinnamon bun for me. And good luck with the biopsy. I hope it goes perfectly.

EmiPark210 Contributor

Update: 

 

I had more gluten yesterday than I've had in the past week and man did I pay for it. I'm still feeling it in my limbs today (soreness, tingling) but there were multiple points where my body was trying to decide if I'd stop hurting it if I puked or passed out. Luckily neither happened. But I haven't felt that bad in a long time... since before my testing in February. 

 

My mom is on the plane to come to my school to take me to my endoscopy and take care of me for the next couple days as I process the last bits of gluten out and get to be the best version of me again. My boyfriend has his blood tests tomorrow as well, but I'm concerned that they won't do a full pannel even if he requests it. I only got the ttgIgA test because I didn't know better. 

 

In 24 hours, I should be done with my endoscopy, eating creamy vanilla ice cream from a shop that the celiac's group in town promotes as safe, or at least they know how to make everything safe. I'm so ready.

peanutbutterandjelly Newbie

Isn't it the worst, knowing that your body doesn't cope, but you kind of have to for accurate results? :( 
5 days until my appointment. 

1desperateladysaved Proficient

Wishing you well,

Diana

nvsmom Community Regular

Today is the day, right?  Good luck!

EmiPark210 Contributor

And I'm done!! Everything went really well today. The doctor only took one or two biopsies after he said he was going to take 8...which is slightly frustrating. But he also said there was enough visual damage that I should start being gluten free today, which was the plan anyway. I'm still a little sleepy and groggy but I don't remember a thing after they said "here comes the first wave of medicine" referring to the anaesthesia. I feel perfectly fine now and so content that this is all over. My mom is here and going to make me spaghetti with brown rice noodles for dinner. Thank you to everyone who ever read or replied to a post throughout this journey. I know this is just the beginning but I'm just so happy to know what was wrong.


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



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

I am glad it went well and that you got a definitive diagnosis.

 

Happy gluten Free Day!

 

Diana

powerofpositivethinking Community Regular

glad you are getting some answers!!  hope you're feeling better today  :)

And I'm done!! Everything went really well today. The doctor only took one or two biopsies after he said he was going to take 8...which is slightly frustrating. But he also said there was enough visual damage that I should start being gluten free today, which was the plan anyway. I'm still a little sleepy and groggy but I don't remember a thing after they said "here comes the first wave of medicine" referring to the anaesthesia. I feel perfectly fine now and so content that this is all over. My mom is here and going to make me spaghetti with brown rice noodles for dinner. Thank you to everyone who ever read or replied to a post throughout this journey. I know this is just the beginning but I'm just so happy to know what was wrong.

peanutbutterandjelly Newbie

Glad it went well! Hope your gluten withdrawals aren't too bad!

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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,212
    • Most Online (within 30 mins)
      7,748

    Melissa McGowan
    Newest Member
    Melissa McGowan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.