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

Need Assistance With Testing
0

5 posts in this topic

I've been struggling with digestive problems for the last few years. My doctor has said IBS, lactose intolerance, and a few other things. I noticed that it was gluten-containing foods and brought this to his attention. He did blood tests, which showed negative. Went to the gastroenterologist in the same practice. She said I had too low of a negative to say not celiac, so she wanted to test me for everything GI related under the sun, then return to the endoscopy for celiac. I decided to try eliminating gluten from my diet and it worked. It even cleared up things that I never were thought to be gluten related. So, I went back to the gastroenterologist. The first one was out on maternity, so I saw an associate. He looked at the labs, said it has nothing to do with gluten at all, since the labs were negative. He said my problem was residual from a childhood bacterial infection and that gluten was a coincidence. He told me to continue gluten free and come back if anything changes.

Here are the labs, so hopefully someone here can help:

IGA .99 Normal <45.0

IGG 14.05 Normal <45.0

tTG 2 Normal 0-19

Reticulin <1:5 Normal <1:5

Endomysial IGA Negative

IGA Total 65 Low 68-378

IGD Serum <.07 Not sure on this one, since it lists <=15.3. Does that mean less than or equal to in this case?

IGG Total 1310 Normal 768-1632

IGM 141 Normal 60-263

Some co-workers had mentioned that they should have done an anemia panel as well as a total antibody count panel as well. Does it sound like they missed tests here that could have shown the real picture? And does anyone have any tips for finding a gastroenterologist, since I feel like I need a better one?

Thanks.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Were you gluten free or light prior to the blood draw? You need to be ingesting gluten to produce the antibodies measured in celiac blood work.

I'm not sure, but it looks like the only celiac antibody tests were:

tTG-IgA

EMA-IgA = Endomysial

you also had low total IgA which means the above two tests were likely inaccurate even if you were eating gluten.

your total IgG looks strong so celiac antibody IgG based tests are a better indication of celiac disease - if you are eating gluten.

tTG-IgG

AGA-IgG = Gliadin

DGP-IgG = Deamidated Gliadin Peptide

Yes, nutrient testing is an important part of celiac diagnosis. Bs, D, K, Iron, Ferritin, Copper and Zinc are what my doc orders at Dx and check ups.

As far as finding another GI - check with a local celiac support group or try a google search for your city+celiac+ gastroenterology. When you call to make an appt - ask the scheduler if this doctor specializes in Celiac Disease.

Hang in there :)

0

Share this post


Link to post
Share on other sites

Once I had an idea of what it was, I tended to eat whatever I could that had gluten in it, since I had the mindset that I wouldn't be able to eat it much longer. I recall that the GI I went to first said that I was only tested for celiac markers, but offered no additional insight into that.

0

Share this post


Link to post
Share on other sites

I recall that the GI I went to first said that I was only tested for celiac markers, but offered no additional insight into that.

This, unfortunately, is quite common. A second opinion would be a very good way to proceed.

0

Share this post


Link to post
Share on other sites

He said my problem was residual from a childhood bacterial infection and that gluten was a coincidence.

What? How old are you? A residual problem from a childhood bacterial infection? That makes NO sense, residual symptoms from even the worst infections should last no longer than a year. What was the infection and how long ago was it?

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
      104,116
    • Total Posts
      919,451
  • Topics

  • Posts

    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,155
    • Most Online
      1,763

    Newest Member
    AndiR
    Joined