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. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    2. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    3. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    4. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,220
    • Most Online (within 30 mins)
      7,748

    Dye42
    Newest Member
    Dye42
    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

    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
×
×
  • 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.