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
      104,145
    • Total Posts
      919,571
  • Topics

  • Posts

    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,177
    • Most Online
      1,763

    Newest Member
    lolobaggins
    Joined