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

Was I Properly Diagnosed?

maddycat

Recommended Posts

maddycat Contributor
maddycat
Posted

I was "diagnosed" in August with Celiac Disease by a GI dr. They only did the Anti Gliadin (AGA) IgA and Anti Gliadin (AGA) IgG tests. Both came back very slightly elevated.

The ranges were:

0-25 normal

25.1-75 equvocal

75.1 + up high

My results were 27 and 31 respectively.

Now I'm starting to doubt that I was diagnosed properly. I keep reading that these two tests cannot tell you conclusively if it is Celiac. What else can cause them to come back slightly elevated? I know it is too late to get a biopsy done as I have been eating gluten free for over 6 months now. Should I try to get gentic testing done to see if I have the "Celiac genes"?

Do you think it might not be celiac but more an intollerance to gluten, possibly?

Any thoughts would be appreciated.

Thanks,

Marcia

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

Celiac.com Sponsor (A8-M):


confused Community Regular
confused
Posted
I was "diagnosed" in August with Celiac Disease by a GI dr. They only did the Anti Gliadin (AGA) IgA and Anti Gliadin (AGA) IgG tests. Both came back very slightly elevated.

The ranges were:

0-25 normal

25.1-75 equvocal

75.1 + up high

My results were 27 and 31 respectively.

Now I'm starting to doubt that I was diagnosed properly. I keep reading that these two tests cannot tell you conclusively if it is Celiac. What else can cause them to come back slightly elevated? I know it is too late to get a biopsy done as I have been eating gluten free for over 6 months now. Should I try to get gentic testing done to see if I have the "Celiac genes"?

Do you think it might not be celiac but more an intollerance to gluten, possibly?

Any thoughts would be appreciated.

Thanks,

Marcia

I am not as smart as many in here, im just learning, but from what i have read and learned already, it sounds more like an wheat intolerence then celiac. I do know that u cant get results just from an high IgG, cause that is what my son has with the other parts being normal. I do know that ttg or Ema are the most accurate for celiac.

You could still do entrolab testing, even if u just want to test for the genes, that would help tell if its an intolereance or celiac (i think) someone else might know more about that to.

Do you fell better being gluten free?

I know many just stay gluten free and not need a diagnoses from a dr or a lab

paula

Rachel--24 Collaborator
Rachel--24
Posted
Do you think it might not be celiac but more an intollerance to gluten, possibly?

You could very well have Celiac Disease....because they didnt run the full panel with tTG and EMA you didnt get a full picture.

It is true that you may not have Celiac but it is also true that had they run all of the tests....you may have had positive tTG or EMA....which would clearly indicate Celiac.

If all the tests were run and the two which are very specific for Celiac were negative....there would be some room for questioning the diagnosis. The tests werent ordered so this is not the same as being negative...I would assume its Celiac unless proven otherwise.

Did you have symptoms that resolved on the diet?

How is your health now?

I would probably get gene tested if I were in your shoes. It still doesnt prove Celiac but it would definately be helpful to know whether it could or couldnt be. Unless you are willing to go back on gluten for several months and get re-tested this is really all you have to work with.

I would not test with Enterolab (for anything but genes)....you will not get a more clear picture with Enterolab. The test isnt going to tell you anything that you dont know already and it still cant tell you whether or not you have Celiac. You already have positive IgG and IgA in blood so you wont benefit from having the stool test done.

Resolution of symptoms is #1 in my opinion. If you've got good results from the diet and are feeling as if its made a difference...I would definately stick with it. Whether or not its Celiac Disease you did have these antibodies in your blood and if the diet is helping...this is the most important thing.

CarlaB Enthusiast
CarlaB
Posted
I would not test with Enterolab (for anything but genes)....you will not get a more clear picture with Enterolab. The test isnt going to tell you anything that you dont know already and it still cant tell you whether or not you have Celiac. You already have positive IgG and IgA in blood so you wont benefit from having the stool test done.

I agree. You already know you have at the very least a gluten intolerance (not just wheat) and Enterolab can't tell you any more than that.

I also agree that genetic testing would at least let you know whether you are predisposed to having celiac.

rez Apprentice
rez
Posted

I'm not saying that you don't have Celiac, but I am saying that you are 100% right that you were NOT properly diagnosed. I can't believe the ignorance in the medical community, and this was a GI specialist! That's crazy and I would be so angry. The two most specific tests to Celiac are the tTG and the EMA with the EMA having almost a 100% accuracy rate. The gold standard is the biopsy. A good GI doctor would definitely NEVER have diagnosed you with those results. The two tests you had come back positive are in no WAY, SHAPE, or FORM a diagnosis of Celiac. I would educate yourself w/ Dr. Peter Green's book about Celiac or go on a reliable website like Web MD. CRAZY!!! Stories like this outrage me! Good luck and I would personally take the info you learn back into the doctor. Celiac is a serious life long disease and if it's not Celiac, you deserve to know what it is. Good luck! Don't waste your money on Enterolab either. They won't diagnose you w/ Celiac. They can't and they don't claim to. They could diagnose a gluten intolerance, but if you feel better on the diet, and who wouldn't, you've already figured that one out. :):) Good luck again!

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. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    2. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

      What exactly are you taking from doterra?
    4. Xravith
      - Xravith posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Challenges eating gluten before biopsy

      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      17

      My only proof

      Doterra is a life saver and yes I feel like im waiting because Im getting yes you are celiac, no your not celiac. Im so FRUSTRATED, exhausted and tired of explaining to medical why I feel this way.Im stressed because my body isn't feeling well.Yes I am and no it's not just a food allergy as downplayed with doctors Ive seen.I even went to the " celiac specialist...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,461
    • Most Online (within 30 mins)
      7,748
    Shannon7274
    Newest Member
    Shannon7274
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      What exactly are you taking from doterra? 
    • Xravith
      Challenges eating gluten before biopsy

      By Xravith · Posted

      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease. However, he said, because of my family history and my symptoms were strongly related to gluten, it was very possible that my Celiac Disease is developing and my antibodies may become positive in the future.  I tried to continue the gluten challenge for the biopsy, around 2-3 g of gluten per day, but it was enough to make me feel worse each passing day. I started developing anemia and other mild nutritional deficiencies, and it was really affecting my daily life. I'm a student and exams are coming up, so my doctor suggests me to strictly remove gluten until I feel better so I could study without problems until I could do the gluten challenge when I come back home for holidays. Since going gluten free, I feel like a completely different person. My mind is clearer, I have no stomach pain during the day, and even my nails improved within just two weeks. It could also be Non-Celiac Gluten Sensitivity, but of course I’ll need the biopsy to know for sure. I was wondering, has anyone else had negative blood tests at first and later tested positive? And has anyone struggled with the gluten challenge because of symptoms?
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Doterra is a life saver and yes I feel like im waiting because Im getting yes you are celiac, no your not celiac. Im so FRUSTRATED, exhausted and tired of explaining to medical why I feel this way.Im stressed because my body isn't feeling well.Yes I am and no it's not just a food allergy as downplayed with doctors Ive seen.I even went to the " celiac  specialist " Dr Fernandez-Becker who down played my ailments and stated im not and then yes I am I even had one her " care team" ask my why do you want that diagnosis. UNMMMMM. I don't want it, its been my life confirmed in 1994.Menopause intensified extra sensitivity and medical has down played my sibo, ibs, CELIAC, now im having skin and eye issues. I thought help was available but its been a complete medical disaster. 
×
×
  • 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.