Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Upset...not Only Can't They See Me Sooner


okieinalaska

Recommended Posts

okieinalaska Apprentice

I called directly to the Gastro Doc's office today and spoke with someone about getting an appointment possibly before Christmas. The lady promised to call me back in 20 minutes and then never did. I waited an hour and a half to call back and then no one remembered talking to me and of course I didn't know the name.

So I explain all over again and he checks the schedule (the doc is of course taking a couple of weeks off over the Holidays I find out) and yes Jan 13 is the first available appointment. I ask a question about the endo and he says we have to schedule that. I said the lady who made the appointment told me this WAS the endo, you mean I have to wait even longer? I am in pain, eating a normal diet and they told me I had to keep eating that way till my appointment.

So he goes and puts me on hold and comes back and tells me the gastro doc says if I am in pain to stop eating that diet. I tell him I am worried about messing up my test results and my other doc told me to eat normally so I wouldn't. He just repeated again what the endo doc said.

Then when I asked more questions, it's likely I will have to wait 2 weeks out from that appointment to get the endo. When I told him the referral line told me this WAS the endo he just said "Yeah, they aren't the sharpest tools in the shed over there". And that I would have to first meet the doc and talk about my issues and the blood work then they would schedule the endo.

(which totatly makes sense but that is not what I was told)

Ugh. I could just cry.

Amy in AK


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

If I remember correctly your blood test levels are pretty high. I would do what the GI doctor said and stop eating gluten. You may find when you go to the doctor that with your blood test results and your response to the diet that he doesn't feel he needs an endo to 'diagnose' you. Contact the doctor that referred you and ask that they send your records so that the GI can see what your symptoms were on gluten. You could call the GI office again to make sure that is what is a possibility. Some doctors will 'officially' diagnose that way. Some doctors will also do a call back after hours so you can talk directly to them, that might be something to ask about also so you can hear it directly from the doctor.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,021
    • Most Online (within 30 mins)
      7,748

    Jen Arch
    Newest Member
    Jen Arch
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Diana Swales
      After years of living with Celiac Disease, learning through every bump and breakthrough, and guiding others through the gluten-free maze — I've officially qualified as a **Nutrition Coach** with Precision Nutrition. Now I’m ready to take this journey deeper… but I need your help. To complete my final certification hours, I’m offering **a limited number of FREE spots** (yes, completely free!) to work with me over the next few weeks. I’m looking for **5 people** who: Are newly diagnosed with Celiac Disease or gluten-intolerant Feel overwhelmed, confused, or frustrated with food Want support from someone who truly understands Are ready to build confidence and calm in their daily eating We’ll work together on what matters to *you*: Your food choices Your mindset Your kitchen habits Your ability to speak up for your needs This isn’t just about avoiding gluten — it’s about reclaiming ease, joy, and nourishment. If you're interested, comment below or DM me the word **"Ready"** and I’ll send you the info to get started. Let’s make food feel safe again. With care, **Diana**
    • Dora77
      Hi everyone, I have celiac disease and I’m asymptomatic, which makes things more stressful because I don’t know when I’ve been glutened. That’s why I try to be really careful with cross-contamination. For almost a year, I’ve been having yellow/orange floating stools consistently. I’m not sure if it’s related to gluten exposure or something else going on. I’ve been trying to identify any possible mistakes in my routine. Today, I made myself some gluten-free bread with cheese. Normally, I’m very careful: I use one hand to handle the cheese packaging (which could be contaminated, since it’s from the supermarket and was probably sitting on a checkout belt that had flour residue), and the other hand to touch my gluten-free bread and plate. But today I accidentally touched the bread with the same hand I used to grab the cheese pack from the fridge. The fridge handle might also have traces of gluten since I live in a shared household where gluten is used. I’m worried this mistake could have contaminated my bread. There were no visible crumbs or flour, but I know even trace amounts can be a problem. Has anyone had similar experiences or symptoms from this level of contact? Could this kind of exposure be enough to trigger symptoms or cause intestinal damage? Thanks for reading.
    • Mswena
      So eight days in a row of gluten on top of gluten on top of gluten, I just had to resort to the EpiPen. I wish I could post a picture because you wouldn’t believe how enormous my gut is! It makes my head look like a pinhead.Ahhhgggsahhhhh!!!! I have discovered that I have to read the ingredients when I use a product up that I’ve been able to use without getting a reaction, because they can change the ingredients and bam my toothpaste now has gluten!!! my doctor told me gluten free means it has 20 ppm which someone with a severe a celiac as I’ve got that thing there kills me. I try to find certified gluten-free in everything. I can’t eat any oats unless it’s Bob’s red mill certified gluten-free. Good luck everybody this autoimmune disease is wicked wicked
    • Mswena
      I have been using a little bit of Lubriderm when I wash my hands because it’s the lotion offered at a place I frequent once a week. Assuming it was gluten-free I bought a bottle. I couldn’t figure out why I was getting gluten EVERY night. I use a little of the lotion in the morning on my neck, with no reaction, but at night, I use it on my arms and legs and face and get gluten gut pretty bad. After eight nights of having to have diphenhydramine injections for severe gluten, I googled “is Lubriderm gluten-free” and it led me to this forum. I am going to go back to olive oil as I have been gut sick sooooooo bad with a huge gut and pain eight days in a row now. Sick of feeling sick.
    • ShariW
      These look great!  I follow several people who frequently post gluten-free recipes online (plus they sell their cookbooks). "Gluten Free on a Shoestring" and "Erin's Meaningful Eats>"
×
×
  • Create New...