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 Our Content
    eNewsletter
    Donate

Do I need further testing or do I know I have Celuac?

Estes

Recommended Posts

Estes Contributor
Estes
Posted

I have had anemia for years.  Recently I had brain fog, headaches, nausea, and fatigue.  My Iga came back >100.0 H positive.  Igg 7.1H weak positive.  Dr. Said this is because I naturally prefer rice so it was a weak positive.

My question is this.  Do I have celiac?  I am changing everything about my life based on the above numbers which I don't totally understand.  Dr. Told me to go to the grocery store and "see you in a month for your annual physical".  

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

Celiac.com Sponsor (A8-M):


SLLRunner Enthusiast
SLLRunner
Posted

What are all the celieac blood tests he did?

What was the doctor's interpretation of the blood tests?

Have you had an endoscope?

I am concerned by your doctor's comments because it sounds like he/she blew you off. I didn't know rice could affect the results of the celiac blood tests.

I believe if you test positive on any of the celiac blood panel it warrants further testing.  As for you are celiac, only complete testing can tell you that, and an endescope with 4 to 6 tissue samples of your small intestine is the gold standard.

Do not stop eating gluten until all testing is complete because then it can render a false negative. 

sdlane Rookie
sdlane
Posted

I agree with Runner.....DO NOT STOP EATING GLUTEN.  In fact, eat more.  Sounds like a primary care physician told you all this?  Demand a referral to a Gastroenterologist and get that endoscopy....but have it done a few months after you've started eating gluten again.  Knowing or not knowing is truly a life or death decision.  I had 12 biopsies and was diagnosed easily at Marsh 3a before I even did the blood tests.  Best wishes to you!  ❤️

Estes Contributor
Estes
Posted
  • Author

I was diagnosed last Tuesday after my spaghetti lunch so "gluten free" is only somewhat pertinent to my diet as it is all less than a week ago I knew nothing of all this.  What I hear you say is "start eating gluten again and request an endoscopy with a gastroenterologist".  

It was a primary care physician.  You are correct.  The test I had was Tiss. Transglutaminase Ab Prof. (IgG, IgA).  Both came up positive so I believe my Dr. Felt we had enough info.  You disagree, am I correct?   

I just want to do the right thing.  I appreciate your input and I assume that since you have already crossed this bridge that you know more than my new Dr.

SLLRunner Enthusiast
SLLRunner
Posted
1 hour ago, Estes said:

I was diagnosed last Tuesday after my spaghetti lunch so "gluten free" is only somewhat pertinent to my diet as it is all less than a week ago I knew nothing of all this.  What I hear you say is "start eating gluten again and request an endoscopy with a gastroenterologist".  

It was a primary care physician.  You are correct.  The test I had was Tiss. Transglutaminase Ab Prof. (IgG, IgA).  Both came up positive so I believe my Dr. Felt we had enough info.  You disagree, am I correct?   

I just want to do the right thing.  I appreciate your input and I assume that since you have already crossed this bridge that you know more than my new Dr.

Estes, 

I am sorry, but I'm very confused. Your first posting asked if you have celiac, and this posting you say you were diagnosed.

Diagnosed with celiac? If not, diagnosed with what?

Estes Contributor
Estes
Posted
  • Author

I apologize for being confusing.  I received my diagnosis of celiac based only on a blood test.  I am both doubtful and in denial.  According to my family doctor, I have Celiac, no further testing needed.  I want to know for sure.  Can a blood test be that sure?

cyclinglady Grand Master
cyclinglady
Posted

Estes,

A positive celiac blood test means the next step is getting biopsies 4 to 6 tissue samples of the small intestine via endoscopy.  This is done by a GI (Gastroentrologist).  A biopsy is required for a celiac diagnosis.  This step is sometimes skipped if it is a child.  

Open Original Shared Link

Open Original Shared Link

Are you in the U.S? 

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

Celiac.com Sponsor (A8-M):


SLLRunner Enthusiast
SLLRunner
Posted
5 hours ago, Estes said:

I apologize for being confusing.  I received my diagnosis of celiac based only on a blood test.  I am both doubtful and in denial.  According to my family doctor, I have Celiac, no further testing needed.  I want to know for sure.  Can a blood test be that sure?

Oooohhhh, gotcha.

You are wondering if you need further confirmation of being celiac.

The endoscope is the golden standard for celiac diagnosis (see Cycling Lady's post prior to mine).

I suggest you ask your doctor to refer you to a GI doctor who specializes in celiac disease, because that doctor will know what to do. 

Estes Contributor
Estes
Posted
  • Author

You got it!  That is my question.  I have e-mailed my clinic requesting an endoscopy.

I am in the US.  Rochester, Minnesota. Do you know if I need to eat gluten for an endoscopy if I have been gluten free for a week?  I know my city has fabulous resources for Celiac.  They are at Mayo Clinic.  That is not where I am at. 

Thank you all so much!

cyclinglady Grand Master
cyclinglady
Posted

Start eating gluten again.  You must be on gluten for 2 to 4 weeks prior to an endoscopy.  Luckily, one week of being gluten free should not harm your results.  Be sure to share this (gluten free for a week) with your new GI.  If your PCP balks, show him the University of Chicago's celiac website or the Mayo Clinic.  The endoscopy can check for other issues too and it can tell how much intestinal villi damage has been done.  

Estes Contributor
Estes
Posted
  • Author

PCP says that an endoscopy is not necessary because both blood tests came back positive and one was very high.  I suppose not having to go through an endoscopy has the benefit of not having to endure an endoscopy.  

Thank you all!  I may be too fatigued to fight this out with my PCP.  

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,993
    • Most Online (within 30 mins)
      7,748
    Kellie P.
    Newest Member
    Kellie P.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
×
×
  • Create New...