Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Confused About My Diagnosis

Neko2277

Recommended Posts

Neko2277 Newbie
Neko2277
Posted

Ok so 2 years ago my doctor tested me for Celiac Disease (blood tests) and called me and said the results were positive for celiac and to go on a gluten free diet. So i did. Three months later I went to a gastro md and he told me that i would need to go back on gluten to have the endoscopy done. I didn't want to because when I ate gluten I felt so horrible. I never got the endoscopy, but felt great gluten free. (2years gluten free) I was satisfied with the positive blood and diet results. Anyway about 6-7 months ago all the symptoms have seemed to return. I am very strict with my diet and KNOW that I am not getting glutened. So I went to a new gastro md who wanted to confirm what I said about celiac and took more blood tests. (I thought you couldn't do that when you were on a gluten free diet.) They insisted that you could. And low and behold the results came back today, negative! They told me, "no you do not have celiac disease. It must be something else."

Help! What should I do now? Do I need to find a more informed doctor?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


aikiducky Apprentice
aikiducky
Posted

If you are gluten free, the blood tests should come back negative. That means that you've done a good job on the diet so congrats on that. The gastro doc is ignorant.

How careful are you about cross contamination and minute amounts of hidden gluten? Many people get more sensitive to gluten when they go gluten free and stop eating it all the time.

Another possibility is that you have another food sensitivity. For example I get almost the same symptoms from dairy as I do from gluten.

Pauliina

Link to comment
Share on other sites
Michi8 Contributor
Michi8
Posted

Can you get a copy of your original blood tests to see the original results and compare to the more recent tests? It's likely that the negative results you're getting now are because of being gluten free for so long.

Michelle

Link to comment
Share on other sites
Neko2277 Newbie
Neko2277
  • Author
Posted

I got a copy of my old tests all I need to do now is get my new ones. I also called a new doctor who is a celiac specialist. But I think I might also have a lactose issue. Thanks for all your help.

Link to comment
Share on other sites
Hells Bells Apprentice
Hells Bells
Posted

I think you need a more informed doctor.

If you are gluten free the results of the blood test will be negative and anyway the blood tests should not be used to exclude celiac disease. You may have another sensitivity or intolerance causing the problem. The other option for you may be the entero lab testing.

Link to comment
Share on other sites
Neko2277 Newbie
Neko2277
  • Author
Posted

I am going to have the DNA test done. Just so I know for myself. I might also get checked for other intolerances.

Link to comment
Share on other sites

Archived

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

Go to topic listing

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

      Trying to read my lab results

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep...
    2. Aussienae
      - Aussienae replied to Aussienae's topic in Coping with Celiac Disease
      65

      Constant low back, abdominal and pelvic pain!

      I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back. This disease is very mysterious (and frustrating) but not always to blame for every pain.
    3. trents
      - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
    4. trents
      - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

      What kind of stool test was done? Can you be more specific?
    5. mishyj
      - mishyj replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,221
    • Most Online (within 30 mins)
      7,748
    lortaine
    Newest Member
    lortaine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Bayb
      Trying to read my lab results

      By Bayb · Posted

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
    • Aussienae
      Constant low back, abdominal and pelvic pain!

      By Aussienae · Posted

      I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back. This disease is very mysterious (and frustrating) but not always to blame for every pain. 
    • trents
      Why?

      By trents · Posted

      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
    • trents
      Why?

      By trents · Posted

      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Why?

      By mishyj · Posted

      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
×
×
  • Create New...