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. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      14

      Related issues

    2. - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      2

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

    3. - Theresa2407 replied to Aya77's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Books about celiac

    4. - Known1 replied to Aya77's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Books about celiac

    5. - knitty kitty replied to Colleen H's topic in Coping with Celiac Disease
      3

      Barilla gluten free pasta

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

    • Total Members
      133,473
    • Most Online (within 30 mins)
      7,748

    Eddie Graham
    Newest Member
    Eddie Graham
    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

    • Wheatwacked
      Did they ever tell you specifically which vitamins would interfere with which tests? Fermented pickles source of thiamine  and other B-vitamins, The fermentation process with lactic acid bacteria increases the nutrient value.   Colonies of beneficial bacteria can help crowd out the the bad SIBO. Have you had the rash biopsied for Dermatitus Herpetiformus?  Atopic Dermatitis and dermatitis herpetiformis share symtoms and atopic dermatitis patients have higher risk of dermatitis herpetiformis.  dermatitis herpetiformis is a symptom of Celiac diagnosis. When I had the carotid artery stent, the hospital put down "wheat allergy" for the food service.  I guess allergy puts the fear of god in them more than the misunderstood Celiac Disease.  Whatever keeps me alive in this world.   
    • Theresa2407
      You are correct.  Same place.  I have used their site for so long and have it bookmarked.  Still living in past.  Our support group was affiliated with them.
    • Known1
      Hmm, I think you mean the Gluten Intolerance Group®?  Their website is not gig.net.  Maybe it was at one point?  I am new to all of this, but did find their website here:  https://gluten.org/ Kind Regards, Known1
    • knitty kitty
      @Scott Adams, You're right about corn and wheat not sharing similarities in the 33-mer peptide segment of gluten.  Corn has a completely different peptide that causes an autoimmune reaction because it attaches to HLA-DQ8.  Casein in dairy shares with wheat similarities in the33-mer peptide chain. Sorry about the oversimplification.  Maize Prolamins Could Induce a Gluten-Like Cellular Immune Response in Some Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC3820067/
    • Scott Adams
      I just want to mention that corn and wheat do both contain storage proteins (corn has zein, wheat has gliadin and other gluten proteins), and there are some small similarities in certain amino acid sequences. However, those similarities are not considered medically equivalent, and corn proteins do not trigger the autoimmune response of celiac disease in the vast majority of people with celiac. Celiac disease specifically involves an immune reaction to gluten peptides found in wheat, barley, and rye. Corn is classified as gluten-free because its proteins do not activate that same immune pathway in most individuals. Although corn intolerance is very real, the explanation about the proteins being the same is oversimplified to the point where it's not accurate.
×
×
  • 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.