Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

My Results
0

9 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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

Blessings,

Julie

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,099
    • Total Posts
      920,354
  • Topics

  • Posts

    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,133
    • Most Online
      1,763

    Newest Member
    Mycaringkidsmom
    Joined