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

Positive Experience At Doctor's Visit


susiek

Recommended Posts

susiek Apprentice

I went to my doctor's visit on Friday, prepare to be a little demanding. I took the list of tests in the celiac panel, as well as some articles I had found through links here.

All that angst was for nothing since my doctor was pretty knowledgable about gluten intolerance/celiac.

She said that had she known my family history earlier, she would have had me tested before this. Then we went through some of the symptoms, and realized that a lot of these were for things I had talked with her about in the past (feeling dizzy after eating--I thought I was diabetic, but had a recent blood test that said my blood sugars were low; achy hands--I've been x-rayd, tested for lupus and rheumatoid--also a family history).

I did make the comment: "Here I thought I was the healthy one out of the 8 of us."

She stopped writing, looked thoughtful for a moment and said, "You are the lucky one if all you have is celiac. What you have is controlled through diet. What your sisters have with the lupus and rheaumatoid is out of their control. You have an allergy and that's all."

It made me re-think everything and feel better.

So I've been gluten free since Friday afternoon. I already feel different. I actually ate a salad at a local restaurant today (took my own dressing which I am 99% certain is gluten free) and didn't get sick. In the past, it was instantaneous. I did almost cry when I ate a gluten-free cookie it was so awful! lol

Now I wait for the blood test results. Dr. P said if the blood work is borderline, she'll order a biopsy, otherwise I'll get a referral to a dietician right away.


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



Celiac.com Sponsor (A8-M):



LKelly8 Rookie
So I've been gluten free since Friday afternoon. I already feel different. I actually ate a salad at a local restaurant today (took my own dressing which I am 99% certain is gluten free) and didn't get sick. In the past, it was instantaneous. I did almost cry when I ate a gluten-free cookie it was so awful! lol

Now I wait for the blood test results. Dr. P said if the blood work is borderline, she'll order a biopsy, otherwise I'll get a referral to a dietician right away.

Excellent. So nice to hear something positive! :)

What brand of gluten-free cookie did you try? I'm eagerly awaiting my amazon .com order for Mi-Del :wub: Royal Vanilla Sandwich cookies. Their faux Oreos are tasty as well.

debmidge Rising Star

that's a great experience (Dr. knowing what to do/say about celiac). It's good to hear good stuff like that.

Archived

This topic is now archived and is closed to further replies.

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

    • Total Members
      133,201
    • Most Online (within 30 mins)
      7,748

    Karen LK
    Newest Member
    Karen LK
    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

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.