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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    2. - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

    3. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    5. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

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

    • Total Members
      132,694
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.