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

Newly Diagnosed

Bastet

Recommended Posts

Bastet Newbie
Bastet
Posted

I am so glad I found this forum! I have been reading for about a week or so and finally joined.

I was diagnosed with Celiac disease on May 12. I am a little confused.

I have always had a "bad" stomach. Years ago I was diagnosed with gastritis found during an edoscopy. I learned to avoid things that gave me a stomach ache and got along pretty well. The weird thing is that my "go to" foods during attacks were plain pasta and white bread. I never noticed any symptoms from eating those things.

Fast forward to the end of January 2009.... I had a horrible stomach attack. The pain was intense, but got better after vomiting. The odd thing was that I threw up food that I had eaten the day before. I was actually crying and moaning from the pain at my Doc's office. He sent me to the emergency room. They found nothing wrong and sent me home after some morphine. I figured it was a fluke and went on with my life.

A month later...another attack with the pain and vomiting plus diarrhea. I did not bother with the emergency room this time. I just went to my regular Doc the next day. He referred me to a GI Doc. He set me up to have an EGD and colonoscopy right away. I am a cancer survivor. I was sure the tests would show radiation damage or something. Nope! Everything was good except my small intestine. The biopsy showed Celiac disease.

I have been on the Gluten free diet ever since (after one last binge at Applebee's on May 12). Anyway, I don't feel much different on the gluten-free diet. My husband says my anxiety has gotten much better. Who knew that my horrible anxiety could be caused by something like gluten?

Anyway...my question is after typing up a book (sorry)....do my symptoms sound lilke celiac disease? Could my Doc be wrong? I have eaten pasta and bread all my life without noticing anything.

Thanks to any and all who take the time to read my post and respond.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted
Anyway...my question is after typing up a book (sorry)....do my symptoms sound lilke celiac disease? Could my Doc be wrong? I have eaten pasta and bread all my life without noticing anything.

Thanks to any and all who take the time to read my post and respond.

Symptoms vary, but endoscopic biopsy is the gold standard of Celiac Diagnosis. If you have eaten gluten your whole life it stands to reason that it will take time for your body to heal. I'm just over a few months gluten-free after nearly 44 years of gluten. I see some improvement, but not much yet...the bloating has improved. About 3 weeks to a month in I became very frustrated but read many posts that indicated the younger the person at diagnosis the quicker the recovery...I'm still hopeful for more improvement as the weeks go on.

Here is a great youtube of a video produced at UCSD's Celiac Center. It is long (over an hour) but helpful.

Open Original Shared Link

Welcome!

FMcGee Explorer
FMcGee
Posted

I've only been gluten-free four days longer than you (I also had the blood test and endoscopy come back positive) and don't feel miraculously better overnight, either. A lot of people do, according to what they've posted on the internet, but I don't. I, too, have felt my anxiety decrease, and the bloating has gone down a little bit, but I'm waiting for that energy bounce-back and for my stomach to quit being annoying. Yesterday I resolved to be patient; this is easier said than done. Keep in touch, and here's hoping we both get that recovery we keep hearing about soon!

ang1e0251 Contributor
ang1e0251
Posted

Remember each person's symptoms are unique. Don't expect there to be a certain set of symptoms that everyone should have identically. That's why so many of us go years without dx, our dr's think each person with celiac disease should look and act the same. Some have no symptoms but still are having their insides waste away.

You do have some symptoms and those are your indicators. You may retain those same ones over time or become more sensitive and have other feelings. This disease just isn't cut and dry.

As far as the energy boost, you could try the sublingual B12. It really boosted my energy and brain power too.

Bastet Newbie
Bastet
Posted
  • Author

Thank you for the input everyone. It is nice to not feel alone as this disease seems to be somewhat isolating. It's one of those things you have to experience (either yourself or a loved one) to appreciate. If I am honest with myself, this diagnosis does seem to answer long-standing questions about GI issues, anxiety, and brain fog that I have experienced for years.

Tra cy Newbie
Tra cy
Posted
Thank you for the input everyone. It is nice to not feel alone as this disease seems to be somewhat isolating. It's one of those things you have to experience (either yourself or a loved one) to appreciate. If I am honest with myself, this diagnosis does seem to answer long-standing questions about GI issues, anxiety, and brain fog that I have experienced for years.

Well said...bloating and brain fog!!! 4 weeks gluten-free and 3 episodes. I am assuming I am still learning to watch ingredients carefully.

It is not worth taking chances because I loose a whole day.

Tra cy

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. Rogol72
      - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they...
    2. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

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

      Gluten Issues and Vitamin D

      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/
    4. Scott Adams
      0

      Tahini Swirl Fudgy Brownies (Gluten-Free)

    5. Butch68
      - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

      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 react...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,228
    • Most Online (within 30 mins)
      7,748
    BethA25
    Newest Member
    BethA25
    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

    • Rogol72
      Guinness, can you drink it?

      By Rogol72 · Posted

      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      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
      Gluten Issues and Vitamin D

      By MogwaiStripe · Posted

      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
      Guinness, can you drink it?

      By Butch68 · Posted

      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
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      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.
×
×
  • 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.