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

How Do I Start?


lushgreen

Recommended Posts

lushgreen Apprentice

I have just begun suspecting gluten insensitivity/celiac disease for myriad health-related problems. I was wondering what sort of a doctor I should look for to help with the diagnosis. I live in NYC and will call the center at Columbia next week when they re-open. Any suggestions would be appreciated. Thanks.

  • 4 weeks later...

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



Celiac.com Sponsor (A8-M):



jriegel Newbie

i am also beginning to suspect. i cut wheats out of my diet for a few days and now every time i eat them i get a horrible pain in my stomach and within an hour "indigestion" and by morning i wake up and my gut feels like there's a rock in it.

anyway, i am wondering what kind of doctor do i need to go for questions and testing? i am in a new city and just started new health insurance, so i really don't know where to begin. suggestions, please.

watkinson Apprentice

Hello to both of you, :)

It depends on your insurance. I had to see my primary doctor first and get a refferal. Then I went to see an endocrinologist and an allergist. The endo. did the blood work and the biopsy, the allergist tested me to see if I aslo had any food allergies. Turns out corn and pecans get me. <_<

Make sure you don't give up eating gluten until after your blood test. You have to have the antibodies in the blood for a positive test. If there is no gluten there will be no antibodies.

The other way to do this is to do your own test. Stop eating gluten and see if you feel better. If so...who cares what the blood test says, you know you feel better. I do however recommend that you go the traditional route and find out through your doctors.

Good luck with the testing, hope you feel better soon, Wendy

jenvan Collaborator

I choose a GI doc, who did my endoscopy. However, most docs can give you the blood test. My hematologist did that. If those tests come out negative, and you are confident of a gluten intolerance, then I'd try an intolerance food test, which you can do via mail as well...

jriegel Newbie

thank you, both. that is very helpful :)

Carriefaith Enthusiast

When I got sick my general practitionar referred me to a GI specalist. If you want an official diagnosis make sure that you stay on the diet until after the bloodwork or biopsy or you may get false negative results.

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.