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

My Results


imsohungry

Recommended Posts

imsohungry Collaborator

Hi guys,

I haven't written in awhile. The truth is that I am homebound b/c of my frequent diarrhea and illness. Nobody knows what it is! I've been hospitalized 2 or 3 times in the last 6 months and been to the ER 4 or 5 times. I am VERY sick.

Anyway, they had diagnosed me with Celiac a long time ago and then changed it to ulcerative colitis and now changed it to nothing!

I requested a copy of my medical records and discovered that 18 months ago when I was tested for Celiac, these were my results:

IGA antibody: 13 (11 is cut-off for "normal")

IGA serum: 44 (80-something is cut-off for normal)

TTG antibody was 3 (negative)

I was told I didn't have any signs of gluten intolerance/celiac, but only one of those tests came back a definite negative. What are your opinions? What other tests have ya'll had done? My great aunt has Celiac, my mother never goes to the doctor, but she has (at a minimum) IBS and rectal cancer. I may not have Celiac disease, but I do wonder about gluten intolerance and would like to ask for a full panel of bloodwork just to see what I can find out. I have fissures and hemmoroids that the surgeon said he can't fix until the GI or GP gets my diarrhea under 10 times a day.

I have had a biopsy recently, and it was normal.

Thanks for any feedback!

Julie


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Are you gluten free or when tests came back negative did you stick with a gluten diet? If your still consuming gluten my first suggestion would be to go with a very strict trial of the diet for a couple of months as false negatives are pretty common. My own diagnosis was delayed by years because I show false negative on testing.

txplowgirl Enthusiast

I agree with Raven, I think you need to be gluten free. It sounds as if you have at the very least an intolerance. I have never heard of a false positive test. I would start your gluten free diet today.

imsohungry Collaborator

Hi there! How have you been? :)

Well, only one of my tests came back definitely negative for Celiac, and it was TTG. I can't remember if I was eating gluten at the time or not.

Do you happen to know what tests I should have done to have a full panal of bloodwork for gluten intolerance?

Good hearing from you!

Julie

ravenwoodglass Mentor

Hi there! How have you been? :)

Well, only one of my tests came back definitely negative for Celiac, and it was TTG. I can't remember if I was eating gluten at the time or not.

Do you happen to know what tests I should have done to have a full panal of bloodwork for gluten intolerance?

Good hearing from you!

Julie

This is only my opinion but since you have already had positive tests I wouldn't even bother to have more testing done. We have recently been hearing of folks being denied health insurance because of diagnosis. With positive blood tests you really already have a diagnosis, IMHO.

GlutenFreeManna Rising Star

I requested a copy of my medical records and discovered that 18 months ago when I was tested for Celiac, these were my results:

IGA antibody: 13 (11 is cut-off for "normal")

IGA serum: 44 (80-something is cut-off for normal)

TTG antibody was 3 (negative)

Thanks for any feedback!

Julie

I agree with Raven. You have a positive test. The one positive trumps the negative ones. You dr was no good. They should have at least advised you to try goign gluten free. Get a new dr and get retested (since this was 18 months ago it could change) if you really need a dr diagnosis befor egoing gluten free. If you are even gluten light at the time of testing it could make the results false negative. So retest if you cna and try the diet ASAP no matter what the results say.

imsohungry Collaborator

Thank you! I'm just trying to figure this out. Sigh... You guys are more knowledgable than the doctors.

Blessings,

Julie


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



Celiac.com Sponsor (A8-M):



cassP Contributor

Hi guys,

I haven't written in awhile. The truth is that I am homebound b/c of my frequent diarrhea and illness. Nobody knows what it is! I've been hospitalized 2 or 3 times in the last 6 months and been to the ER 4 or 5 times. I am VERY sick.

Anyway, they had diagnosed me with Celiac a long time ago and then changed it to ulcerative colitis and now changed it to nothing!

I requested a copy of my medical records and discovered that 18 months ago when I was tested for Celiac, these were my results:

IGA antibody: 13 (11 is cut-off for "normal")

IGA serum: 44 (80-something is cut-off for normal)

TTG antibody was 3 (negative)

I was told I didn't have any signs of gluten intolerance/celiac, but only one of those tests came back a definite negative. What are your opinions? What other tests have ya'll had done? My great aunt has Celiac, my mother never goes to the doctor, but she has (at a minimum) IBS and rectal cancer. I may not have Celiac disease, but I do wonder about gluten intolerance and would like to ask for a full panel of bloodwork just to see what I can find out. I have fissures and hemmoroids that the surgeon said he can't fix until the GI or GP gets my diarrhea under 10 times a day.

I have had a biopsy recently, and it was normal.

Thanks for any feedback!

Julie

if your Iga Serum was only 44- then u are Iga Deficient- which means any of your antibody tests that test Iga will be INNACCURATE! only your Igg tests could be looked at to show anything. Iga deficiency is also common in those with Celiac.

mushroom Proficient

Whether or not you were eating gluten at the time of the biopsy, it is possible to have a false negative on this test but have positive blood results. The biopsy depends on the skill of the doctor, whether he takes enough samples, and whether he takes them from the right places.

I would consider myself diagnosed and start a gluten free diet immediately so that you can clear up your diarrhea, fissures and hemorrhoids. :)

Archived

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

  • 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. - Midwesteaglesfan replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Going for upper endoscopy today

    2. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      My Journey Continues some notes

    3. - Cecile replied to Cecile's topic in Related Issues & Disorders
      3

      Symptoms

    4. - Jmartes71 posted a topic in Introduce Yourself / Share Stuff
      0

      Not validated

    5. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      4

      New issue

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

    • Total Members
      133,188
    • Most Online (within 30 mins)
      7,748

    TBH
    Newest Member
    TBH
    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

    • Midwesteaglesfan
      UPDATE:  here I am a couple months past my full diagnosis and going gluten free.  I’ve been feeling a lot better.  More energy, joint pain has gone down a lot.  Haven’t really had the headaches and migraines I’ve had for years.   My daughter(age 17) has had some symptoms which we thought were something else, but with my diagnosis I said,  have the dr test her for celiacs.  Her antibodies came back as greater then 100.  So she is scheduled for her endoscopy and going to be joining me on this journey.
    • xxnonamexx
      I have increased my vitamin intake Vitamin B Complex plus 2 Thiamax, NeuroMag, Benfotiamine with breakfast. I continue reading and watching gluten free items that I eat. Breakfast is Bobs Redmill gluten-free oatmeal with Chobani zero sugar yogurt a banana and blueberries. Lunch since im at a deli gluten-free is hard to come by so I stick with turkey with gluten-free Promise bread. Dinner varies like gluten-free pasta, tacos, chicken, sausage, meat etc. rice or take out from gluten-free places. I have decided to stay away from gluten-free pizza as I feel I felt weird with it unless its store bought frozen. I am going to try to make my own gluten-free bread, Bagels. I have been good with baking gluten-free treats like cookies, muffins. Snacks if its not fruit, veggies I grab a protein bar or chocolate guilty pleasure reeses, hersheys, York PP. I am going to start to use my fitness pal app to track what I eat and note when I feel off to see if I can pinpoint if a trend of a certain gluten-free food is a culprit. I noticed once in a while I feel a little bloated, gassy that I think is from the pizza so I am going to avoid it and continue narrowing it down. I have been doing very well and I have learned even if you think you are doing everything 100% gluten-free eating it can sneak in without you knowing. This year is more traveling which im afraid of but have already looked into gluten-free places in Nashville which they have and back to Aruba I went last year and have the gluten-free places already selected. Most restaurants I have been to have been very helpful with what to stay away from to avoid CC. If a place states they don't have any gluten-free the I stick with a salad or when I took my kids to breakfast as much as I miss the breakfast this place serves I played it safe with yogurt and a fruit bowl so at least my kids were happy to go there again. Local farmers market has great gluten-free items that I treat myself to like different types of breads, baked goods. My journey continues...
    • Cecile
      Thank you Scott for your wonderful info. I will pry my Doctor for more extensive blood testing. I appreciate your time. 
    • Jmartes71
      After waisted time of new care team, yet again EXHAUSTED saw new gi today in Modesto, though all my ailments im not getting any kind of concern of me being celiac and sentive to just about everything since menopause. Dr daid why don't I go see you guys because my blood shows zero for celiac. I told him im glutenfree since 1994 by colonoscopy with biopsy positive celiac sprue by GI.Its RIDICULOUS when im bringing in material from this site of knowledge as well as the autoimmune institute,and  there's zero interest on their part.Medical IS causing me depression.Im view as a disability chaser, IM STILL RECOVERING from being a bus driver that im still healing and having more issues, now I may have multiple sclerosis or meningioma. Ive reached out, wrote letters, NOT feeling well. This is inhumane. 
    • Jmartes71
      I was taking medicine for sibo but it was not agreeing with my stomach at all.Was on gabapentin but it amps me up.I was taking in morning because it wasn't allowing me to sleep.This has always been an issue with medicine and me.Even going to dentist, the good shot that numbs you once, I can't take because it makes my heart beat fast and I  get the shakes.I have to take the crappy stuff and get injected always more than 4 times always.Its infuriating 
×
×
  • 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.