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

Looking For New Doctor


Guest Eagle

Recommended Posts

Guest Eagle

Hello, I am looking for a doctor who will diagnose Celiac Disease based on the positive results of Enterolab testing. My celiac blood panel didn't show it up and the gastroenterologist didn't even biopsy my small intestines. I could repeat the celiac panel later but I would have to ingest more gluten and don't want to risk it after how sick I have been. We are looking for a doctor in Washington State or Arizona or New Mexico. There has to be someone out there.


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Very few doctors will diagnose you with Celiac based on enterolab's results alone. Most will only agree that it is a gluten intolerance of some sort, potentially Celiac. Is there a specific reason why you need an official diagnosis? Many people on the board have doctors who just know that their patients do well on the gluten free diet, and keep it at that. Many people are willing just to be labeled "gluten intolerant" rather than Celiac. Positive dietary response is reason enough to do the diet....and luckily, you don't need a doctor's permission to do the diet. I don't believe that you would get any different treatment from a doctor who is aware of your gluten problem vs. having "real" Celiac.

celiacgirls Apprentice

If you have already tested with Enterolab, you can e-mail them to ask if there are any doctors in your area who use Enterolab. I found my doctor that way.

I think I am probably classified as only gluten intolerant by him. He ordered a bone density scan and some blood tests to check for nutrient levels as well as the gene test to see if I was more or less likely to have celiac disease. My tests came back normal so my guess is he thinks I am only gluten intolerant. I did the genetic testing through Enterolab and didn't give him the results because I don't want my celiac gene in my health records. I think he did everything he would have if he thought I was a true celiac.

Judyin Philly Enthusiast

THANKS FOR THE TIP

I'M GOING TO EMAIL THEM.

JUDY

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
      45

      My journey is it gluten or fiber?

    2. - JoJo0611 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Yeast extract

    3. - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

    4. - Seabeemee posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

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

    • Total Members
      133,166
    • Most Online (within 30 mins)
      7,748

    AmynDevyn
    Newest Member
    AmynDevyn
    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
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
    • trents
      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
    • Seabeemee
      My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean. I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea).  I also have been diagnosed with GERD and some associated issues hence the endoscopy. I also was diagnosed with NAFLD after an abdominal CT scan in December - which surprises me because I gave up alcohol 5 years ago, workout 5 days a week, cardio / weights and cook from scratch every night. Anecdotally,  I do feel better when I do not eat a lot of carbs and have been staying away from gluten 95% of the time until my follow up.  History: I had an emergency bowel obstruction operation in August 2021 for a double closed loop obstruction, open surgery removed 40 cm of my small intestine, my appendix, cecal valve and illeocectomy. Beside the fact that this put me in the situation of no longer being able to absorb Vitamin B12  from my diet and having to  inject Vit B 12 2x a month, I also became Iron deficient and am on EOD iron to keep my levels high enough to support my Vitamin B12 injections, as well as daily folic acid. I tested positive for pernicious anemia in 2022 but most recently that same test came back negative. Negative Intrinsic Factor. My results from the biopsies showed 2nd part of Duodenum, small bowel Mildly patch increased intraepithelial lymphocytes with intact villious architecture. Comment: Duodenal biopsies with normal villous architecture and increased intrepithelial lymphocytes (Marsh I lesion) are found in 1-3% of patients undergoing duodenal biopsy, and an association with celiac disease is well established however the specificity remains low. Similar histologic findings may be seen in H pylori gastritis, NSAID and other medication use including olmesartan, bacterial overgrowth, tropical sprue and certain autoimmune disorders. So my GI ordered Labs for Celiac confirmation: Sorry I couldn’t upload a photo or pdf so typed below: TEST NAME                               IN RANGE and/or RESULTS RESULTS:  IMMUNOGLOBULIN A :           110 GLIADIN (DEAMIDATED) AB (IGG, IGA)                            <1.0 GLIADIN (DEAMIDATED) AB (IGA)                                     <1.0 GLIADIN (DEAMIDATED) AB (IGG)                                    <1.0 TISSUE TRANSGLUTAMINASE ANTIBODY, IGG, IGA TISSUE TRANSGLUTAMINASE AB, IGG                                     <1.0 TISSUE TRANSGLUTAMINASE AB, IGA                                     <1.0 INTERPRETATION: <15.0 ANTIBODY NOT DETECTED  > OR = 15.0 ANTIBODY DETECTED RESULTS: HLA TYPING FOR CELIAC DISEASE INTERPRETATION (note The patient does not have the HLA-DQ associated with celiac disease variants) More than 97% of celiac patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. Genetic counseling as needed. HLA DQ2 : NEGATIVE HLA D08: NEGATIVE HLA VARIANTS DETECTED: HLA DA1* : 01 HLA DA1* : 05 HLA DQB1*: 0301 HLA DQB1*: 0501 RESULTS REVIEWED BY: Benjamin A Hilton, Ph.D., FACMG I appreciate any input, thank you.         
    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
×
×
  • 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.