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

Ignorant Doctor


curiousgeorge

Recommended Posts

curiousgeorge Rookie

Wow, I just had the MOST frustrating appt with a ped my DS sees for growth issues. I had had DS tested for celiac (TTG) and somehow he was sent a copy from the hospital. Not sure why/how. He said it was normal. I told him I was celiac and he not in so many words told me I was delusional. He asked about gut symptoms and It old him I had very little despite a VERY positive test. He also pretty much told me that celiac is totally over diagnosed and far too many people are on a gluten-free diet than need to be. He went on about how difficult the diet is, and I said, well its not really, and he said "well it is unless you cheat". I am MAD. I do not cheat and my little DS is on a very VERY gluten light diet because my house is gluten free.

I am beyond mad at this ignorance. This guy is not a schmuck, he's HIGHLY respected in his field but obvioulsy CONPLETELY ignorant. I mean what about the 30% of kids that are seronegative?

Has ANYONE come up against this?


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



Celiac.com Sponsor (A8-M):



mimommy Contributor

I think far too many of us have had our share of difficult and/or ignorant medical professionals. Unfortunately the responsibility then lies in your hands to both advocate for your child through diligent research and to keep looking until you find the right doctor. To me, choosing a doctor is a lot like choosing a spouse; not a relationship to be entered into lightly, especially where my child is concerned. Not to sound cavalier, but if this doctor doesn't 'get it' you can try to educate them (good luck) or move on. I know how hard it is to find a doctor for your child. Their health and well being is in this person's hands, but they have to be able to communicate with YOU, the parent.

Good luck <_<

p.s. my story about second opinions is this--one ped. GI said the biopsy showed no villi damage, but gave a diagnosis of acid reflux. I took the same biopsy to another doctor who found sub-total villis atrophy, and no signs at all of reflux disease. Therein lies the virtue of shopping around and following your inner wisdom--a parent's instincts are FAR better than doctor's believe them to be.

p.s.s. Not all doctors are arrogant jerks.

curiousgeorge Rookie

Not to defend him but he is a growth doc and not a GI.

Very obvioulsy my little DS is reacting to the gluten-free diet. He has gone from being under the growth curve to being between 5th and 10th percentile. Growth doc said tihs was very good but felt it was conincidental.

I'm not chasing a dx for DS given I'm gluten-free and the house is. It still really made me mad to be second guessed about my dx.

sugarsue Enthusiast

Interesting, seems to me a growth doc should be very well versed in celiac since it affects children's growth so much.

I can only imagine how annoyed and frustrated you were when he questioned your diagnosis! I am glad you will be such a wonderful and educated advocate for your son!

curiousgeorge Rookie

Well, that is exactly what I thought. He emphatically stated he did not have celiac so I could stop worrying about that. Totally wrong information. Are not kids of celiacs suppose to be tested on a regular basis. Sheesh.

The Kids Folks Apprentice

I would say move on. Find another doctor. Its tough, we just went through it. Our last ped was more interested in treating the symptoms. When I told her that we decided to go gluten free - she said that the diet was a killer! Great support from a doctor who thought nothing wrong or difficult in giving my kiddos numerous medications to treat the symptoms, even though the medication were causing some of the symptoms.

DS (age 7) was slowly growing in her opinion - to me he was not. He continued to fall on the growth curve each year until he stopped well under the 3rd percentile! We've been gluten-free for almost 6 months. His symptoms have disappeared! Growth is slowly starting to return! :)

I asked around and found a peds that is willing to listen and understands the "instinct" thing. The clinics and the doctors are willing to schedule "interviews". I so recommend this!! If a doctor isn't willing to meet with you before I would continue looking. You can get a pretty good feel of peds views in an interview and the amount of time that she/he is willing to take with you!

I just scheduled a physical with the new peds and will let you know how things go with a doctor who listens and understands and is not quick to medicate!!

curiousgeorge Rookie

Our family doc is fine so we're good there. We only see this guy once a year so I have a while to decide what to do. Its interesting because he is a little short thing himself so it almost seems like he gets defensive over the growth stuff. Its not as easy as just calling around I'm afraid. We're in canada and you have to work the system to even get in to see a guy like this. sigh. I'll as our family doc if there is someone else.


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



Celiac.com Sponsor (A8-M):



  • 1 month later...
hannahp57 Contributor

I agree about finding a new doctor. when i started getting sick i was 16. my doctor was convinced i had an abusive boyfriend and this was "my cry for help." i explained to him that i didnt even date. i liked to eat and didnt want to stop eating. it took 4 months of arguing about this and he finally showed up one day with a printout of the gluten free diet safe/unsafe list but refused to give me any formal test for diagnosis. i still haven't had a formal diagnosis. just an amzing recovery after being gluten free for three years.

i would find a new doctor. possibly a GI specialist

ptkds Community Regular
Interesting, seems to me a growth doc should be very well versed in celiac since it affects children's growth so much.

I can only imagine how annoyed and frustrated you were when he questioned your diagnosis! I am glad you will be such a wonderful and educated advocate for your son!

If a growth doctor promoted celiac, he wouldn't be able to give his high-dollar treatments with growth hormones! That is why he doesn't think that many kids have celiac. He likes his fancy house and huge paycheck!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,032
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.