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

Follow Up Appointment


Glutina

Recommended Posts

Glutina Rookie

Hello again everyone! I hope your gluten free lives are going well :)

I just wanted to update on the follow-up appointeny I had with my doc, as it was a bit surprising to me. Quick overview:

So...I was tested by a G.I. specialist in January for Celiac via bloodwork. (He immediately asked if I had ever been tested for it and about my family history and so on...he said I basically had all the symptoms.) I was thrilled that he took the time to think of what might be causing all my "washroom" and fatigue issues, and my general sense of feeling "off", not to mention the excruciatingly painful "attacks" I would get in my gut after eating certain things, more specifically soy sauce and imitation crab meat and bread. (All big gluten nono's!) So, he also set me up to have an ultrasound to rule out anything more severe with any organs or intestinal abnormalities, etc.

In the follow up appointment I had last friday, he confirmed that my celiac blood work was negative, but at the higher end of normal for something (ack---forget exactly what :blink: ) but not high enough to read celiac. He also said it was not the specific celiac-gluten antibody but something else that showed a high reactivity...? Anyhoo---the ultrasound was normal, thank goodness! I also told him that I had tried going gluten free after our first appointment when he mentioned possible celiac because I did not want to deal with my symptoms another day! He asked how it was going and I said GREAT! I asked him about the possiblilty of a false negative and he said that yes, those are quite possible, but here's where he surprised me: he said that since I am feeling better going gluten free, whether or not I have celiac, he owuld give the same advice to follow a gluten free diet. He also said that if I WANT the biopsy, he'll do it, but he left it up to me. Up to me! Wow!!! He also said something else that I had never thought of....that going gluten-free could be helping me to avoid other intolerances which ultimately leads to the same path: a normal, symptom-free life! He also said that going gluten free will complicate any further testing, and so he is also leaving that up to me!!! He said that since gluten free is working for me, I need to stick with it no matter if I have celiac (unlikely), gluten sensitivity or even wheat sensitivity. It is so nice to know that if I have any further concerns or if symptoms start up again that he has told me to come back and get further testing if I feel I need it.

I just thought I would share a positive GI specialist story with you all...and to remember that the diagnosis is ultimately the same for celiac disease or gluten sensitivity. AND, more importantly, that your health is in YOUR hands and not to stop at one doctor's opinion (or lack of one as I have also experienced with other misinformed doctors).

Your friend in this gluten free life,

-Glutina


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It sounds like you have a great doctor who is more concerned with the health of his patient than a lot of them are. Congrats. I think the home page here has a place for celiac savvy doctors to be listed, you may want to add him to the list.

Glutina Rookie

I agree that I am lucky in finding him as a specialist! I will add him to the list of "good ones" :)

-Glutina

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. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    4. - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,439
    • Most Online (within 30 mins)
      7,748

    Lillian Steele
    Newest Member
    Lillian Steele
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.