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

I Don't Want To Make Y'all Mad


conniebky

Recommended Posts

conniebky Collaborator

Hi everyone! Well, it's been one month since I've been to my doctor and went on hormones. I CAN eat gluten, I've been a little apprehensive to post this.....

It turns out my hormones were so screwy that it was giving me panic - not attacks, but panic syndrome.

I've lost 23 pounds. It was ME who searched the net and found that my symptoms equaled gluten intolerance.

Well, the hormones have helped except I'm still goofy.... well, my glasses broke so I was trying to super glue the frame back together but it was hard because I had to put my left hand on the frame and the right side on my knee to put the super glue in there .... so the glasses got stuck to my knee and you know how when you can't use your hands it makes your nose itch? So my nose started itching so I scratched my nose, but there was super glue on my finger, now there's my finger stuck on my nose and the glasses got stuck to my knee and Lord or Lord, I was a big ol' mess with all that but it all worked out.

I know you all said my doctor doesn't know what he's talking about, but I am better, only I can't take caffeine or sugar anymore.


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Well at least we got you off the sugar and the caffeine Connie. Now if we can just get you off the cheap booze, the roughnecks, the cream puffs, the chawin' terbacky and the glue sniffin' we will have something to celebrate! Lol, just kidding. Congrats on your perseverance with the health search paying off. :D

T.H. Community Regular

If you've found the reason for your symptoms, that is all that matters in the end. :)

I think so many of us here have been through so much where we had to hunt and fight to figure out what's wrong, most of us are just happy to hear that someone else has found the answer for their own health, no matter what that answer is. COngrats - I hope your doc had some good hormone therapy that works really well for you.

Skylark Collaborator

Connie, that's wonderful news. The only sad thing about it is that we'll miss your hillbilly humor around here.

Glad you're feeling better and rid of those awful symptoms, and kudos to your doc who figured it out.

chasbari Apprentice

She doesn't really HAVE to leave... does she?

psawyer Proficient

She doesn't really HAVE to leave... does she?

She does not, and is most welcome to stay. :)

WheatChef Apprentice

Eat a big soft pretzel for all of us.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Glad you figured out what was wrong and happy to hear you are feeling better.

Hopefully you were smarter than I was when I superglued my glasses to my nose after I ran into a cupboard door. When the end of the day came I just ripped them off my face. Yowch!!!

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. - MoniqueCham replied to MoniqueCham's topic in Related Issues & Disorders
      3

      Celiac Disease, Lymphocytic colitis and Bowel rupture

    2. - Scott Adams replied to HelenH's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Malt vinegar

    3. - Scott Adams replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      55

      Supplements for those Diagnosed with Celiac Disease

    4. - Scott Adams replied to MoniqueCham's topic in Related Issues & Disorders
      3

      Celiac Disease, Lymphocytic colitis and Bowel rupture

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,550
    • Most Online (within 30 mins)
      7,748

    TNV
    Newest Member
    TNV
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • MoniqueCham
      Thanks for your reply Scott! A long time ago I realized I didn’t fit neatly into uncomplicated celiac disease. Over the years I’ve been diagnosed and treated for SIBO, pancreatic insufficiency and diagnosed with Stage 2 liver fibrosis. I think all the complications occurred because of the refractory celiac disease. When I hit menopause my gut issues seemed to calm down and because I was stable I made the mistake of not following up with my gastroenterologist. Then other autoimmune problems flared and I tried the methotrexate. It worked like a charm for my skin condition… then my sigmoid colon ruptured. Strange but my autoimmune skin condition remains in remission after 6 months off the medication. We have a very long waiting list to get back into see my GI doctor… I was an emergency referral but am still waiting 6 months after the perforation. I need more surgery to fix a fistula that has formed and to reconnect my colon… I have a colostomy at present. I became a dietitian who specializes in bowel diseases but have never met anyone who’s had so many complications with celiac disease. I have a brother and son who also have been diagnosed. My mother had 4 autoimmune diseases including a vasculitis that eventually resulted in her death and it was my father who had the HLA DQ2 gene. Think I inherited some tendencies from each of them. Thanks again for your response… it feels a little lonely dealing with GI issues when I work so hard to remain gluten free.   
    • HelenH
      Thank.you both
    • Scott Adams
      Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction because your body is no longer accustomed to exposure. Many people report significant symptoms after accidental ingestion, including abdominal pain, diarrhea, fatigue, or flu-like feelings. You’re not alone in that experience. It may help to be especially cautious with salad dressings, chips, sauces, and restaurant foods, where malt vinegar is sometimes used.
    • Scott Adams
      A diagnosis of Refractory Celiac Disease Type 2 is a lot to absorb, especially if you feel like the severity wasn’t clearly communicated earlier. It’s understandable to feel shocked and frustrated. RCD Type 2 does require close specialist care, often with a gastroenterologist who has experience managing complex celiac cases, and sometimes coordination with hematology because of the immune cell changes involved. Focusing on nutrition is absolutely important — many people benefit from working with a registered dietitian who specializes in celiac disease to help address malabsorption, weight loss, and vitamin or mineral deficiencies. You’re doing the right thing by seeking information and support. Make sure you feel comfortable asking your care team direct questions about your biopsy results, treatment plan, and monitoring strategy — you deserve clarity and a coordinated approach.
    • Scott Adams
      I’m so sorry you’ve been through all of that — that’s an incredibly complex history. While methotrexate is widely used at low weekly doses for autoimmune conditions, it can, in rare cases, cause serious gastrointestinal side effects, including ulceration, mucosal injury, or even perforation. That said, a spontaneous sigmoid rupture from methotrexate at 15 mg weekly is extremely uncommon. In people with celiac disease — especially refractory celiac — there can already be underlying intestinal inflammation or altered mucosal integrity, which might theoretically increase vulnerability, but there isn’t strong published evidence clearly linking stable celiac disease to a markedly higher risk of methotrexate-related bowel perforation. Other factors such as concurrent inflammation, vascular compromise, infection, steroid use, or microscopic colitis may also contribute. It would be reasonable to review the case with a gastroenterologist familiar with refractory celiac and possibly a rheumatologist, and to report the event as a potential adverse drug reaction. I’d also be very interested to hear if others in the community have had similar experiences.
×
×
  • 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.