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. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748
    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.