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. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      8

      Pain in the right side of abdomen

    2. - trents replied to science enthusiast Christi's topic in Coping with Celiac Disease
      1

      Sugar intolerance 10 years into gluten-free diet

    3. - science enthusiast Christi posted a topic in Coping with Celiac Disease
      1

      Sugar intolerance 10 years into gluten-free diet

    4. - trents replied to Healthierbody2026's topic in Introduce Yourself / Share Stuff
      1

      New at gluten sensitivity

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

    • Total Members
      133,463
    • Most Online (within 30 mins)
      7,748

    jjwejackso
    Newest Member
    jjwejackso
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Heatherisle
      I know these topics are a few years old but thought I would comment. My daughter was diagnosed last November from endoscopy end of August. Having good and bad days but recently having a bout of lower back pain, bloating, some abdominal discomfort with a feeling of pressure. She’s doing her best with gluten free and finally has an appointment with the dietitian this week, also waiting to have several blood tests done. Have told her it takes time for things to settle but she’s worried it might be recurrence of an ovarian cyst from 2/3 years ago. 
    • trents
      Welcome to the celiac.com community, @science enthusiast Christi! I don't have a problem with disaccharides but I do with polysaccharides and complex carbohydrates which are so common in many gluten free processed foods. Gar gum, xanthan gum, pea fiber, chicory root, inulin etc. All those "prebiotics". 
    • science enthusiast Christi
      Hey Celiac friends,  I'm wondering how weird I am. About a year ago, I started getting bloated all the time and having extremely smelly gas. Lots of it. I had to avoid people, keep windows open, etc. It really upended my life in a somewhat horrifying way. I figured out that if I didn't eat any sugar, the symptoms mostly resolved. With more experimentation, I found out that I'm intolerant to any disaccharides (things with sucrose, maltose) and some starches. I've since figured my small intestine stopped making some digestive enzymes. Since Celiac causes the immune system to attack the small intestine, I wonder if I was getting low-level gluten contamination from my environment. (My family eats gluten in our home, and I have to use a shared kitchen at work for lunch.)  I am apparently among the 2% of Celiacs who also have a similar reaction to soy. I've been avoiding both gluten and soy for over a decade now, but sometimes you just get poisoned. For example, I love my houseplants and bought an insect-preventing spray online. After spraying it on all my houseplants, I found out it has soybean oil. Sure enough, two days later I was sick. Soy is such a big ingredient used in everything, I doubt it's possible for me to avoid it completely. Everyone uses lotions with soy on their hands, so every doorknob and switch and item I touch is risky for me.  I was just wondering, has anyone else had carbohydrate intolerance after or related to Celiac? My doctor doesn't know anything about it, especially since I can still digest lactose. Wondering if there are other people out there with similar stories. If eating was complicated before, now it's a bit crazy to be honest.  Thanks, Community! 
    • trents
      Welcome to the celiac.com community, @Healthierbody2026! Just let me check something with you because there is still much confusion in the general population regarding the terminology associated with gluten disorders. You say you have recently been diagnosed with gluten sensitivity. Do you mean NCGS (Non Celiac Gluten Sensitivity) or Celiac disease (aka, "gluten intolerance")? The symptoms of these two conditions overlap. Celiac disease has an autoimmune base and so, there are tests that can be run to detect antibodies in the blood that are produced. Celiac disease does damage to the small bowel lining because of the inflammation present from the autoimmune attack. This is not the case with NCGS for which there are no tests. Celiac disease must first be ruled out in order to arrive at a diagnosis of "gluten sensitivity". 
    • Heatherisle
×
×
  • 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.