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

Just A Funny Thing My Doctor Said...


Rowena

Recommended Posts

Rowena Rising Star

I had to share this, as I recently asked my doctor for some advice on things. But she openly admitted that she didn't know all the answers... (Mainly it was to my question about facial cleanser) So she referred me to a forum where I could ask the very question I had. Guess which one it was?

Yup you got it. This one. Sorry I just had to share that with you guys. I thought you all would find it funny too.


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



Celiac.com Sponsor (A8-M):



GlutenFreeManna Rising Star

You've got a GREAT doctor there! It's rare to find one that will admit they don't have all the answers....Hold onto her!

Rowena Rising Star

You've got a GREAT doctor there! It's rare to find one that will admit they don't have all the answers....Hold onto her!

Its true, and she'll be the first to say I need a second opinion, even though she's positive about her diagnosis. (Fact is she has) She also does not remove ANY possibilities from the picture... Which is good because my last doctor did. And she was an arrogant, "I know everything Don't question me, I tell you what you must do and you have no say in the matter."

Jestgar Rising Star

So she referred me to a forum where I could ask the very question I had. Guess which one it was?

Yup you got it. This one.

No pressure or anything gang. Now that we're physician recommended.

jerseyangel Proficient

Yup you got it. This one.

Wow--that's quite the compliment! :D

kareng Grand Master

The boys pediatrician told me he didn't understand their blood tests. What could I find out? ( found out they weren't positive for celiac). A bit frustrating but at least he is willing to listen to new info.

Skylark Collaborator

Wow, that's quite the compliment. :)


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

This is the best place I know of to come for info :D (Not talkin' about me own here :unsure: )

'

Loey Rising Star

I had to share this, as I recently asked my doctor for some advice on things. But she openly admitted that she didn't know all the answers... (Mainly it was to my question about facial cleanser) So she referred me to a forum where I could ask the very question I had. Guess which one it was?

Yup you got it. This one. Sorry I just had to share that with you guys. I thought you all would find it funny too.

Every time I do a google search for information on something it always has at least five links to this forum. It could be because all of you are the smartest folks I've ever met!!!!!!!!!!!!

Sounds like you have a great doctor. I miss my old doctor from NJ. He was compared to House but he just had a dry sense of humor that you had to "get." I got it. He was a brilliant diagnostician and if I had my colonoscopy when he wanted me to (and had not been using Immodium for years and not telling him about it) I'm sure that celiac would have come up a lot sooner. He sent me to a wonderful GI who did all the tests she could. I was bedridden for 6 weeks after taking Augmetin and he thought it was -C-Dif. He sent me to a GI at that point. I was literally moving to a new town/state the day after I got all of my test results. My old GI wanted me to have a capsule endoscopy as soon as I found a new GI. She thought the celiac had gone undiagnosed for a long time an as concerned about organ damage. My new GI didn't think it was necessary. I was all right for about a month following the gluten-free diet and then had a flare. After being in excruciating pain for 5 weeks (and having the pain also move vertically under my breastbone in addition to the abdominal and lower back pain) he finally ordered the test. Still rather dismissive and treating me like a nut job. Then he called me the day after the test (they had told me it would take 2-3 weeks to read the results) and lo and behold they found an ulcer. Total 360 in his attitude. Not dismissive and my calls are returned immediately.

I'm having a biopsy of the ulcer on November 12th. I now live in a VERY small town with a small hospital. He wants to use a special anesthesiologist because of certain meds I'm on. If I still lived in my old town the biopsy would have been done by now because I used a large teaching hospital and they always had the best anesthesiologists. Have to admit the release form was scary. My hubby says it's standard CYA but they might wind up doing more than the biopsy if they find something else.

I just want to get better so I can get a job and have a somewhat normal life. I'm an unemployed elementary and special education teacher (went back to grad school at 50 after having an exciting first career and then being a stay at home mom after having a child at 40). I taught for 4 years while in grad school and can't even imagine doing that right now. I'm also a resource geek so if anyone ever wants me to research anything just let me know (of course some of the links will lead back to this wonderful forum)

Loey smile.gif

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

      Help I’m cross contaminating myself,

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

      Help I’m cross contaminating myself,

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

      My only proof

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

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Dakota4
    Newest Member
    Dakota4
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • 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.