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

What Else Are They Missing?


bartfull

Recommended Posts

bartfull Rising Star

I have read story after story on this site about doctors who know nothing about celiac. Now, I know that doctors, like teachers and just about anyone else in technical fields, must partake in continuing education. And celiac has been such a "hot topic" for a while now. Yet so many doctors STILL know nothing about it.

 

I'm just wondering, if they haven't updated their learning on celiac, what else are they still ignorant about? How could I trust a doctor who knows nothing about celiac to treat my other ailments? If these doctors are still stuck in the twentieth century, I'm sure they can't provide the lastest and best treatments for anything!  

 

End of rant.


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



Celiac.com Sponsor (A8-M):



SkyBlue4 Apprentice

I hear you! I just went through a discussion with my kids' pediatrician that left me angry. He refuses to test my children for celiac disease because ~wait for it~ they don't suffer with diarrhea.  <_<

frieze Community Regular

make sure you get that refusal in writing..

IrishHeart Veteran

I hear you! I just went through a discussion with my kids' pediatrician that left me angry. He refuses to test my children for celiac disease because ~wait for it~ they don't suffer with diarrhea.  <_<

That's absurd. Relatives of diagnosed celiacs should be screened. In fact, they should be tested every few years.

Bring him the latest info from the U of Chicago Celiac research center that says this is HIGHLY recommended.

Or get a new pediatrician.  IMO

SkyBlue4 Apprentice

Or get a new pediatrician.

I'm thinking about it but my options are limited and not necessarily better.

This morning I was able to get the office to agree to test one of my kids (b/c she's always constipated) but I still have to fight for my other kids b/c they don't present with "symptoms". What a joke. 

kwylee Apprentice

Bartfull, your rant is right on the money, totally agree.  You call to mind that the days are over where doctors are panoptically lauded as some sort of information gods. Yep, I grew up that way back in the 60's - your medical doctor had all the answers and whatever they said was taken as gospel. Until I saw enough of them in the 21st century who denied simple logic or brushed off my intelligent observations about my own body or what I was experiencing, merely because they had not read the symptom or disease in a medical book that could have been written eons prior.  Or worse, because they were afraid to go against the medical establishment.  After countless visits to the doctor without answers, I made the gluten connection on my own, and then pursued testing.  While in the meantime, doctors were still stuck on the useless "stress, hormones or menopause" schtick some go to when they can't admit they haven't a clue.

 

But hey, I'm not anti-doctor.  I am convinced there are good ones out there, the best of which no longer subscribe to their own hubris as substitute for effective medical detective work that keeps up with the times.  Those are the gems.  And hypochondria aside, it's up to us to know to keep looking when our gut tells us the doctor may be totally off-base.  While I understand that doing your own internet research on health symptoms can yield cholera in the face of only a rapid heart rate, we should get used to the garbage-in/garbage-out method of taking responsibility for our own health and well-being, and get yourself to a humble doctor when you need a similar resource....or to stitch you up when you split your lip.

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):



  • 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.