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

New Doctor + Infuriating Discovery


Adalaide

Recommended Posts

Adalaide Mentor

My last appointment with my regular doctor ended with me feeling like he was really just trying to drug me up. I was frustrated and frankly, pissed off, but waited to see my neuro before I did anything else. That was a bust, and I just decided to find a doctor who didn't make me feel like every appointment was more difficult than putting my head through a brick wall.

 

So I went today to see the first doctor I had an appointment with. It was at a clinic and I just was seeing whoever, and I didn't have much hope. I got what little joy I could out of the day when I saw I have lost a few more pounds, before my day was ruined by another doctor. Instead, I saw a PA who treated me like a whole person. He asked questions, ones that made it clear he reads and researches things and attempts to stay current on medical stuff. He actually physically examined me!

 

He said that he can't promise miracles, and he can't promise a cure, but he will promise to do what is within his scope to help me find answers. He says it may well be something incurable, and that most people wouldn't want to hear, but I told him all I want is an answer. If there is help, I'll take it, if it hopeless after that, I will accept it.

 

The first thing he wanted was my medical records, all of them, for the past 4 years. He said he will read through them (not a light task) and then I will follow up. This led to my infuriating discovery. I picked up (in part, what wasn't archived that I am waiting for) my complete medical records from my regular doctor today. Now, this isn't just a doctor's office but a clinic. I usually see "my" doctor but sometimes see his PA and sometimes have to see another doctor. I decided to read through my medical records.

 

There was much swearing (I can't even begin to describe how colorful I was) when I read what was there from last spring. When I freaked out last year about being told I should see a shrink I had no idea what kind of psycho babble that person put in my records. He actually said that I have a psychological/functional issue, and that he suspects my main issue is depression. He goes on to note that my entire issue is somatization. I was quick to google that one and once I realized what that was I went into a complete fit of rage.

 

My chart for 4 years is peppered with depression, depression, depression. I'm not depressed!!!! I have days I'm sad, who the hell doesn't? I am otherwise a happy person though. I am happy with my life overall and while I did at one point in my past struggle with depression, I do not now. I'm both sick, and frustrated and the moronic "professionals" have mistaken my frustration with being ill for depression. Other than picking up my medical records, I have no plans to set foot in that clinic again. I wouldn't grant any one of them the privilege of kissing the fattest part of my ever too ample arse.

 

There are plenty of other things in there to piss me off, but for anyone who reads this, take it as a warning. When your doctor treats you with respect to your face, make sure to get complete copies of your medical records periodically and not just tests. You want to know what they are actually saying about you.

 

In a few days, once I can get my head around this and think straight without seeing red I will write a letter to the doctor I saw most frequently, as well as the psycho babble doctor. They need to know that what they are practicing isn't medicine, and sure as hell isn't in line with any medical oath.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

I totally agree with you, Addy, that most of us would have the hairs rise on the backs of our necks and their radiators boil over if we could read our entire medical records, cover to cover, to find out not only what we have that hasn't been told to us, but what has been said behind our backs about what we (incorrectly) have or do not have, about the states of our various minds and various gratuitous comments about our body shapes and sizes,, dispositions (i.e., not pliant :D ), etc.  I am afraid my medical records are peppered with letters to said doctors informing them of their errors and I am on many a beotch list (or at least, I hope, a do-not-mess-with-this-lady list :ph34r: ).  I have written letters to HMO's about disrespectful treatment, about incompetence, about outright lies, even demanding that the physician not be paid for the non-service that was rendered.  Often?  No.  But when I am really PO'ed, definitely.  I am usually right at the head of the line demanding copies of my medical records. :)

 

It is really the most discouraging, I think, to be written off as a headcase, imaginary symptoms, depression (hell yes, sometimes we have good reason for it, but situational depression, not pathological! -- there is a difference.)  How wonderful that you have someone who is willing to actually read your records; I envy you.  Dare we hope he has knowledge and wisdom to go with it?

cahill Collaborator

When I fired my last PC  I got a copy of my records ,,, It was ,,to say the very least ,,  an eye opening experience  . Inaddition to the comments ( basically  saying I was a nut case and needed drugs to calm me down  ) My former PC  had actually falsified  my medical records to cover her ass.  She knew I had a case to charge her with malpractice so she doctored ( :P pun intended )my records. Thankfully my GI doc and Endo had most of my ( untempered with ) records .

I found out recently that she now longer practices medicine THANK GOODNESS !!!

Adalaide Mentor

I have four years of proof on my shelf that an entire clinic of doctors called me a headcase instead of even attempting to treat me. I am still trying to get my head on straight after this. I can't sleep and am still so angry I don't know how to begin to deal with it. Apparently I'm so bats$#& crazy I'm making myself physically ill and should see a shrink....... deep breaths.....

 

My new doctor, who I have ever intention of sticking with, seems quite knowledgeable. When I went to my old doctors convinced some time ago that my symptoms were consistent with MS and was dismissed out of hand, then was further dismissed when my MRI (with my unassociated brain crap) came back clean, I dismissed it also. I asked doctors to do a lumbar puncture, they wouldn't. This new doctor said that especially because it is only one side of my body that it could very likely be lesions on my spinal cord in my neck and it could be MS. I was stunned by this, having nearly forgotten that I had pushed so hard for testing.

 

This new guy is a smart cookie. He knows what celiac is. He talked about how hard it is to follow the diet (and lets face it, it is if you aren't us!), asked how I was doing with it, asked how I was diagnosed, and generally said things that didn't make him sound like an expert, but he knew enough there to make me comfortable. Apparently he has a doctor friend who has celiac. (um... score!!! :D) He said he has ideas, and he is going to roll them around and read my records and see how the pieces come together and see where to go. He also wants me to bring home a pulse-ox-thinger to make sure I don't have sleep apnea. At least it is just a thing for on my finger, but he wants to rule out that as a possible contributor to my problems. Dude wants to leave no stone unturned.

 

I am going to try to think happy thoughts and attempt a few hours of sleep before my exciting day tomorrow of tracking down more medical records and going to the post office. If there is anything that can distract me, it'll be a 30 minute line at the post office followed by an hour long bus ride home from dropping off my Jeepy trying to avoid creepy guys.

Gemini Experienced

I wouldn't grant any one of them the privilege of kissing the fattest part of my ever too ample arse.

 This nearly made me fall out of my chair laughing!  I love your attitude, Addy!  You are 100% correct about what these doctor impersonators put in medical records.  And now that the government is meddling in our personal affairs, it gets even worse.  There are many things I never divulge to ANY doctor, not that I go often enough for it to matter.  They do not need to know every last thought and practice you have.  None of their business.  I had one GI doc, the last one I ever saw, tell me gently while patting my head that I needed to see a shrink because obviously I had problems in my life that caused my tummy to hurt.  Deression is so overdiagnosed in this country, it's criminal.  They can test for depression but never do and then try and ply you with drugs.  Drives me insane.

 

Make sure you write a scathing letter to this knucklehead....if you do as spendid a job as you did here, it'll make HIS blood pressure soar and rightly so.

1desperateladysaved Proficient

 After 30 years of celiac I had lost my ability to make cortisol to deal with stress.  One's system is depressed, the doctor said, when this is the case.  It was said to be without regard to emotional things going on besides.  The disease puts the body in a depressed state..  I received herbs to help with adrenal support and a healthy helping of vitamin B.  First and foremost celiac is physical.  The mind isn't without the body though. 

 

Diana

Takala Enthusiast

Good Grief.  You, Adalaide, are Not_Depressed. 

 

I guess, in retrospect, I was fortunate that when the Neuro from Hell™ tried that stunt on me, to my face, implying I was making up my ataxia symptoms, bless her heart, even though she had tested my reflexes/coordination on the initial exam a year earlier, and something obviously was wrong,  I had the test results showing actual physical damage to my brain and spine,  and she ended up making an excuse to walk out of the exam room -  and never had the nerve to come back.   When my hands first started going numb off and on, decades ago, the first set of docs also tried this IAIYH sh*t until they found the c spine problem,  I can't believe how many of them have been told " bone loss, c spine problem" and they won't even believe THAT.  I need a freaking hologram of my current PCP standing there next to me waving the cat scan and mri results at them !  Let them walk around 24 hours in this body, and explain how I can do anything, other than to be extremely disciplined to diet and physical therapy, and otherwise athletically gifted -   jerks !   Excuse me for not being scrawny like your stereotypical gut disease patient that you would want to put on some sort of horrid FIBER SUPPLEMENT and an addictive mood happy pill !  

 

Idiots.  Really.  


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



Celiac.com Sponsor (A8-M):



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):



  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.