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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total...
    3. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

      hi, i want to say thank you to you and @trents . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood t...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Just diagnosed today

      Thank you this really helped.
    5. Samanthaeileen1
      - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong. yeah I think we had better test us and the other kids as well.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,814
    • Most Online (within 30 mins)
      7,748
    JaneD
    Newest Member
    JaneD
    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
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Just diagnosed today

      By JoJo0611 · Posted

      Thank you this really helped. 
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.