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

Should My Daughter Find A New Doc

voyager

By voyager
in Doctors

Recommended Posts

voyager Rookie
voyager
Posted

Hi guy, I was diognosed 3 years ago and doing great. I alway thought my 20 yr old daughter had it but could not convince her to be tested, (not enough suffering I guess). We she finally went to her family doc who sent her to a gastroentrnoligist. She had her endoscopy today and the doc immediatly said it looked good villa looked normal, showed her pictures. I thought they had to be sent to the lab? Am I right or not? Then said, she still might have it.

She knows gluten-free makes her feel better and the doc said stick with it if it helps and gave her a list Gluten Free foods to eat. On this list was kellogs corn pops, cocoa pebbles and fruity pebbles, quaker puffed rice.

I do not need to tell you guys that that list is a bunch of bull for celiacs. DOES IT SOUND LIKE THIS DOC KNOWS NOTHING OF THIS ILLNESS , or am I missing something?

Help! Please! I want to steer my daughter straight!

Craig in Deltona FL

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

I replied on your other thread that I do believe that at least several years ago those cereals were all gluten-free, over the past few years, mfrs have changed formulas and now the only safe ones on there are the fruity pebbles and cocoa pebbles...

I wouldn't necessarily give up on the Dr. because of this. If he advised her to stick to the diet if it helps, that is pretty smart. Was she already gluten-free when she had the biopsy though? If she was that could very well skew the results and she may have already begun to heal... There is also the chance that he could have missed areas of damage too...

Since she's already had the biopsy, there is no reason to continue eating gluten if it makes her feel sick. If eating gluten-free makes her feel better than it's obvious she needs to be gluten-free. Once she's gluten-free and doing better there is no reason to need the gi dr! She can do any follow ups with her primary care dr. at least that's what I do.

Lisa Mentor
Lisa
Posted
Hi guy, I was diognosed 3 years ago and doing great. I alway thought my 20 yr old daughter had it but could not convince her to be tested, (not enough suffering I guess). We she finally went to her family doc who sent her to a gastroentrnoligist. She had her endoscopy today and the doc immediatly said it looked good villa looked normal, showed her pictures. I thought they had to be sent to the lab? Am I right or not? Then said, she still might have it.

She knows gluten-free makes her feel better and the doc said stick with it if it helps and gave her a list Gluten Free foods to eat. On this list was kellogs corn pops, cocoa pebbles and fruity pebbles, quaker puffed rice.

I do not need to tell you guys that that list is a bunch of bull for celiacs. DOES IT SOUND LIKE THIS DOC KNOWS NOTHING OF THIS ILLNESS , or am I missing something?

Help! Please! I want to steer my daughter straight!

Craig in Deltona FL

Craig:

You did not mention that several samples for a biopsy's were taken, or a biopsy at all. I would re-question your doctor. I see no reason to do an endoscopy and not do a biopsy at the same time for confirmation.

I would request you daughters records, with her consent (over 18) and take it to another doctor.

It is sad for me that those of us that post here and read here, obviously know, through our own reseach, more about Celiac then our own PM dr's. We are the Voyagers.

voyager Rookie
voyager
Posted
  • Author

Yes, she went on a gluten spree for one week before she had the proceedure. and yes they did take a biopsy.

Guest nini
Guest nini
Posted
Yes, she went on a gluten spree for one week before she had the proceedure. and yes they did take a biopsy.

was she already gluten-free before her week long gluten spree? I ask because 1 week on gluten after being gluten-free is not nearly enough as the reccommendations are at least 3 months of fairly heavy gluten consumption. And how many biopsy samples were taken? Only one? The experts recommend at least 8-10 samples...

so back to the original question, maybe the Dr. isn't as up on the standard recommendations for gold standard dx, but it's not bad that he suggested staying gluten-free if it makes her symptoms go away. There are apparently a lot of varying opinions among the "experts" and some say that you can only have Celiac with positive biopsy, but there are others in the medical field that are saying that positive dietary response is proof enough.

Archived

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

Go to topic listing

  • 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. Flash1970
      - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

      You might try Heallix. It's a silver solution with fulvic acid. I just put the solution on with a cotton ball. It seemed to stop the nerve pain. Again, not in your eyes or ears. Go to heallix.com to read more about it and decide for yourself Also, I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out...
    2. trents
      - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being...
    3. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    4. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress ...
    5. Scott Adams
      - Scott Adams replied to Silk tha Shocker's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help

      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,483
    • Most Online (within 30 mins)
      7,748
    AML2013
    Newest Member
    AML2013
    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

    • Flash1970
      Shingles - Could It Be Related to Gluten/ Celiac

      By Flash1970 · Posted

      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      Help

      By Scott Adams · Posted

      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.