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 Do Doctors Know?


ItchyMeredith

Recommended Posts

ItchyMeredith Contributor

I had my first meeting with a GI doctor today and was sadly disappointed. I even got his name from The Gluten-Free Bible so I thought he would be really knowledgeable. I have only a few GI symptoms but I decided to go to him because my dermatologist said that he knows little about celiac. This GI doctor today told me that he knows little about DH. He then proceeds to prove how little he knows about DH by saying that


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

I don't have any advice but I am sorry.

jerseyangel Proficient

Hi Meredith,

Sorry about the lack of knowledge on your doctors' part. <_< I don't blame you at all for being upset!

On page 52 of Dr. Peter Green's book--"Celiac Disease A Hidden Epidemic", he states (in bold print, I might add)

"If you have a skin biopsy and it is positive for dermatitis herpetiformis, you do not need to have an intestinal biopsy--you have a confirmed diagnosis of Celiac Disease."

stef-the-kicking-cuty Enthusiast

Wow, Patti, that is interesting. I have to give that one to my student, Kathy. She has her DH diagnosis, but the celiac diagnosis wasn't quite so clear. And now she is in denial and said several times "Oh, I don't have it so severe as you Stef." She was cheating on the diet before, I'm not sure, if she's still cheating anymore, but in restaurants, she still isn't as careful as she should be. I told her several times "Kathy, there is no severity level. Either you have it or you don't. You can't just be only a little bit pregnant... right?" Why is that so hard to understand by some people. I don't get it. I will print out what you said, Patti, and show it to her. Maybe we can look it up in this book.

Thanks for posting!

ItchyMeredith Contributor

I'm reading Dangerous Grains and it also says (on p 75) that a skin biopsy of DH "offers another approach to obtaining an accurate diagnosis of celiac."

I had this biopsy- I read the results with my own eyes in black and white. I really don't think I should have to put my body through the damaging effects of the gluten challenge. Wait...reword that...I won't put my body through the gluten challenge.

These books weren't kidding when they said that doctors really aren't up to date with the new research!

Tephie Apprentice

Meredith,

I don't have any advice, but just wanted to say sorry. It's amazing that there are still SO many doctor's that know very little to nothing about Celiac or DH. I am starting to feel better physically (still getting new rashes everyday) so I have decided I am not going to bother trying to get a biopsy. I mainly wanted this to show what kind of damage I has been done.

Take care, Stephanie

ravenwoodglass Mentor
I had my first meeting with a GI doctor today and was sadly disappointed. I even got his name from The Gluten-Free Bible so I thought he would be really knowledgeable. I have only a few GI symptoms but I decided to go to him because my dermatologist said that he knows little about celiac. This GI doctor today told me that he knows little about DH. He then proceeds to prove how little he knows about DH by saying that

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



Celiac.com Sponsor (A8-M):



Betty in Texas Newbie

No they don't know a lot about celiac are DH but they do know how to use that pen and precription pad.I guess they studied that alot in school.

ItchyMeredith Contributor

OMG! I had to add this recent event to round out this whole experience! He just called me back with the results from my blood test. He forgot who I was and gave me the results like he had never met me. Here is my exciting dramatazation:

Doc: I have the results from your bloodtest and it looks like the bloodtest shows that you have celiac disease.

Me: UH...Yeah...I know.

Doc: Now who first told you that you may have it? Why did you think you did in the first place? Have I met with you?

Me: We met on Friday. I have the skin biopsy that is positive for DH.

Doc: OH! I remember you! Well the good news is that your numbers are not that high. I would expect higher for someone consuming gluten.

Me: I'm not consuming gluten. I have been gluten free for a month.

Doc: Oh. Nevermind. This test means that you are not truly gluten free then. You need to carefully scrutinize everything you eat because you still have traces of gluten.

SIGH!

Is it so much to ask for a knowledgeable doctor who remembers you?

confused Community Regular

Omg what a freak. Now are you sure he gave you your results lol. I so miss my old dr, he was supposed to retire when i found out i was pg for the first time. So once he knew i was pg, he put on hold for 9.5 months lol. When i was overdue, he did not sleep, he was so worried about me. Either he would call me or his wife every day to see how i was. Everytime his phone would ring in the middle of the night he would hope it was me, of course it never was so fianlly after 2 weeks of being overdue he is like we need to induce you, or he was going to be in the hospital for exhaustion. I still can call him when i have a problem, even tho he is not practicing anymore. I wish they made the new generation drs more like they made him.

Is this the only time you seen this dr. If it was i dont think i would be going back to him lol.

paula

ravenwoodglass Mentor
OMG! I had to add this recent event to round out this whole experience! He just called me back with the results from my blood test. He forgot who I was and gave me the results like he had never met me. Here is my exciting dramatazation:

Doc: I have the results from your bloodtest and it looks like the bloodtest shows that you have celiac disease.

Me: UH...Yeah...I know.

Doc: Now who first told you that you may have it? Why did you think you did in the first place? Have I met with you?

Me: We met on Friday. I have the skin biopsy that is positive for DH.

Doc: OH! I remember you! Well the good news is that your numbers are not that high. I would expect higher for someone consuming gluten.

Me: I'm not consuming gluten. I have been gluten free for a month.

Doc: Oh. Nevermind. This test means that you are not truly gluten free then. You need to carefully scrutinize everything you eat because you still have traces of gluten.

SIGH!

Is it so much to ask for a knowledgeable doctor who remembers you?

LOL What a winner he is. Well at least you have a conclusive diagnosis and don't have to go through all kinds of nasty tests to get it. Oh well there are good doctors out there, they are just so darned hard to find.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    2. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Alarming

    4. - Maggieinsc commented on Scott Adams's article in Winter 2026 Issue
      5

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,318
    • Most Online (within 30 mins)
      7,748

    direne
    Newest Member
    direne
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
    • xxnonamexx
      Thanks for the info. I have been taking the ones you recommended but when I saw this I was curious if it was something else to add to the journey Thank  
    • Jane07
      I used to be able to get the Rivera yougut i havent been able to get it lately. I like getting it did say it did say gluten free. I just looking for a good yogurt that gluten free that i can add some fruit and nuts to any suggestion would be helpful  thanks
×
×
  • 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.