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

On Turning A Corner At 21 Months


Lisa16

Recommended Posts

Lisa16 Collaborator

I was diagnosed and went gluten free 21 months ago today, and I realized I have turned some kind of corner. So I thought I would write this for the people who ask


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



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

Glad you are feeling good! I enjoyed reading that, thanks for posting! :)

ang1e0251 Contributor

Well said!

BeckyMN Newbie

Thank you for this wonderful post. I am not known for being overly emotional, but this brought me to tears. What a great outlook you have, and it is so nice to think about focusing on the true pleasures in life. I am only 7 months into this crazy gluten free journey, and while I feel a million times better, I still have some complaints and hope that they will continue to improve. I hope to be able to write a note like yours in another year. Thank you.

ranger Enthusiast

This overwhelmed me. I will reply tomorrow.

Mrs. Smith Explorer

Thank you. That gives me so much hope for the future ans it will others, Im sure!

nasalady Contributor

Thank you for this.

I'm only 8+ months into this lifestyle and still have so much wrong with me physically and so much more to learn....even though I already feel positive and hopeful your post increases the level of my hope for eventual recovery.

And I'm truly happy for you!! :)

JoAnn


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



Celiac.com Sponsor (A8-M):



elle's mom Contributor

Also, I am not that emotional, and this gave me a lump in my throat.......thanks for the optimism.

Mskedi Newbie

Awesome!

no-more-muffins Apprentice

What an inspiring post. It has been a rough couple of days for me because I got glutened. I have been doing this for almost 3 months and I feel a lot better, but I still have a ways to go. And dealing with the emotional side of this is just as hard if not harder than living with the physical side. I love to come to this site when I feel people don't understand because I know that there are people here who do. Thanks for sharing your thoughts. I think I'll print it out for a friend of mine who has been gluten-free for 2 months and is progressing slowly.

So, thanks for your post today. You touched many people I am sure many of whom didn't leave a comment.

Three Ds Newbie

Thank you so much for this post! I have been trying to eat gluten free for about 6 months. This part touched me especially:

So know that it will be hard and that you will experience accidents, frustrations, tears in the supermarket, anger, denial, grief, acceptance, depression, obsession, feeling overwhelmed and there are even times when you might think about giving up in some way. But you will get better. And there is light and hope and a better life at the end to look forward to.

I get SO frustrated, often to the point of tears at times, when I'm glutened. And for a long time I was in denial that I was as sensitive as I am to gluten, cc, etc. I've only been able to go a couple weeks at a time without being sick, but it is getting better, and I just need to stick to this. And you are right, this is leading me to some healthier eating - I'm getting better about having fruits and vegetables regularly. Fortunately, or unfortunately :D , one of my favorite indulgences - plain potato chips - are generally gluten free, so I tell myself it's not all bad! But you've given me additional hope. Thank you!

ranger Enthusiast

Hope is the operative word here. Thank you for that! I am 9 months gluten free and, while I am much better, I am not back yet. And, it is frustrating. Sometimes I feel like just eating a twinkie and forget about all this nonsence, but then I think about the consequences. Yikes! Your message spurs me on. There will be a day when your words will be my words. Thank you!

ksymonds84 Enthusiast

Very inspiring, thank you!

pilotmom Newbie
I was diagnosed and went gluten free 21 months ago today, and I realized I have turned some kind of corner. So I thought I would write this for the people who ask
pilotmom Newbie

Thank you so much for an awesome post! My 9 year old daughter has been gluten free for 5 weeks and still is experiencing stomach aches and has been asking when they will go away. She has been going through a lot of emotions. I read to her your post so hopefully that has helped her. Thank you!

Northland Lady Rookie
Thank you so much for an awesome post! My 9 year old daughter has been gluten free for 5 weeks and still is experiencing stomach aches and has been asking when they will go away. She has been going through a lot of emotions. I read to her your post so hopefully that has helped her. Thank you!

Hi, i tried to contact you personally but couldnt make it work! could you tell me how you got glutenated by tea bags? You said in anther post they had gluten in them. :-)

Thanks

Northland Lady Rookie
I was diagnosed and went gluten free 21 months ago today, and I realized I have turned some kind of corner. So I thought I would write this for the people who ask

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. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.