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

Frustrating Results!
0

8 posts in this topic

My doctor has done two blood test to test for Celiac, HOWEVER, I wasn't eating gluten when these tests where taken and he doesn't want to do anymore tests as he thinks I have it for sure. My aunt (and possibly one uncle, waiting to hear back on that) have it. I am just frustrated that he won't do the tests again. I for sure feel 100% better compared to what I did off of gluten but would've liked to know for sure.

Any opinions?

0

Share this post


Link to post
Share on other sites


Ads by Google:

My doctor has done two blood test to test for Celiac, HOWEVER, I wasn't eating gluten when these tests where taken and he doesn't want to do anymore tests as he thinks I have it for sure. My aunt (and possibly one uncle, waiting to hear back on that) have it. I am just frustrated that he won't do the tests again. I for sure feel 100% better compared to what I did off of gluten but would've liked to know for sure.

Any opinions?

I think your body has given you the answer that the blood tests did not! If you weren't eating gluten at the time of the tests, they wouldn't be accurate. Actually there's a possibiity of false negatives anyway. And if he did the tests again, you'd get the same negative results so it wouldn't prove anything.

Welcome to the forum!!!

0

Share this post


Link to post
Share on other sites

For your doctor to do any testing you would need to go back to a full gluten diet for at least 3 months. You have a family history of celiac, you feel better on the gluten-free diet and your doctor has told you that he has diagnosed you as celiac. While you could choose to do a challenge and be retested you do still run the risk of a false negative. If being gluten free has taken care of the issues that prompted you to go gluten free in the first place then you do have your diagnosis.

1

Share this post


Link to post
Share on other sites

If you're well on the 'diet' then, like others have said, stick to it. I also agree your results will be neg when you're not eating gluten. Did the dr not check if you were eating it?

0

Share this post


Link to post
Share on other sites

After reading about many other peoples stories here on this forum, I think you have to determine what kind of proof will satisfy you. About 7 years ago I had blood tests done after many years of dealing with gut issues. Those results were negative but the Dr said he is pretty sure I am gluten intolerant and should follow a gluten-free diet. He based this on me having relatives diagnosed with celiac disease. I partially followed his advice and cut down my gluten intake but still ate some foods with gluten and drank a lot of beer.

Over the past 2 years I had been miserable. Bad gut problems and constant diarrhea. Back in March after going through gut hell, I went to Dr (GI) and had new blood tests done the beginning of May that came back positive. The Dr suggested a biopsy and I thought about it for a while. I determined that if I had listened to the Dr 7 yrs ago I would have spared myself a lot of misery. I canceled the endoscope biopsy and made the decision to go gluten-free for life.

I know how I feel now compared to before and I am satisfied with my decision to go gluten-free without that final biopsy determination. If you want to take the guess work out of it and don't want to go back on a gluten diet to get proper future test results then get the genetic test done to see if you are genetically predisposed for celiac disease.

Good luck with your decision and that is a pretty picture as your avatar!

:)

1

Share this post


Link to post
Share on other sites




I had confusing lab tests but felt better off gluten foods so had the DNA genetic marker tests done. I carry a main celiac marker/gene

. Since these markers are inherited it may help your relatives decide if they need to be gluten free.

0

Share this post


Link to post
Share on other sites

Your doctor is exercising an unusual amount of common sense. I talked to my doctor about gluten challenge and he said "It's too hard to get the celiac tests to come out positive and you would just make yourself sick for no reason."

I know it's a little frustrating to be undiagnosed. I never had testing except as a very young child and I was already off wheat because it gave me stomach aches. You have to trust how much better you feel off gluten and work from there.

0

Share this post


Link to post
Share on other sites

If you want to take the guess work out of it and don't want to go back on a gluten diet to get proper future test results then get the genetic test done to see if you are genetically predisposed for celiac disease.

The only problem with that is that usually they only test for two out of as many as 27 celiac associated genes. My daughter who had been both blood and biopsy positive later had her genes tested by a different doctor. They only tested for DQ2 or DQ8. She was negative for those so the doctors told her that her previous diagnosis was wrong. That prompted me to get my genes tested and I found I was a double DQ9 which is an unusual gene here and usually considered in the US to be an RA associated gene...in other countries it is a celiac associated gene though. After what the doctors told her she went back on gluten and now considers all her symptoms to be 'nerves'. I worry about her but there is nothing I can do but hope that some day she will realize that her bodies reaction to gluten is what is most important. Hopefully that will happen before permanent damage will be done.

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
      104,684
    • Total Posts
      921,741
  • Topics

  • Posts

    • Hello, I have frequent canker sores (roughly comes back every couple of months). Some blood test results are as following. Component Your Value Standard Range TISSUE TRANSGLUTAMINASE IgG 0.31 Index <=0.90 Index Tissue transglutaminase IgA 0.96 Index <=0.90 Index My doctor said that result is unspecific, and I unlikely have celiac disease, since I do not have other abdominal symptoms. For reference, I do have frequent constipation, excessive gas, frequent canker sore, etc. Do you think an upper endoscopy is recommended? I am a little hesitate considering the risk of this procedure and the fact that my symptoms are not that bad. I appreciate all suggestions.  
    • Hello, I see you posted this a long while ago, and perhaps--I hope-- it's no longer a matter of concern, but I thought I'd mention that shortly before I was diagnosed for celiac's, I had distinct yellow blotches on the corners of my eyelids toward my nose. Some months after I had stopped eating gluten, the yellow gradually went away, and--as it just reappeared now several years later, I googled the issue again.  I am only speculating here, but I do believe it is related to liver problems, which, in turn, are related to celiac's. I don't think liver function tests cover all aspects of liver health. I say this because when I was pregnant I developed a temporary liver condition called interhepatic colestasis of pregnancy (ICP), but my liver function tests had been fine. (The condition is diagnosed based on bile levels in the blood, not on liver function). I discovered upon some research that (of course!) ICP  can be associated with celiac's disease.  My hunch is this-- that celiac's presents two problems to the liver: 1) the malabsorption of nutrients--esp. Vit. K2-- that are vital liver health; 2) since gluten registers as a toxin to the immune system (I think?), perhaps the liver gets overloaded processing so much toxic material. Or perhaps there's some other reason. At any rate, poor liver health and celiac's do seem to be linked, according to a few articles I've found. Anyway, hope your problems are resolved now.  
    • my daughter did stool test from enterolab but this gluten sensitive blood test is from http://requestatest.com/tests/search    
    • OK, was your daughter tested by a doctor or did you do one of these order online stool tests? And the same question goes for your tests. Can you give a link to the company?
    • NO. Approx. 1/3 of the population carries the genes for celiac but that does NOT mean they will ever present with celiac. Only a small percentage of them will. A gene test is really used more to rule out celiac rather than to diagnose it. What I meant was that since your daughter is diagnosed and IF you carry one or both of the celiac genes then there is a greater chance you are celiac or "early stages" especially in light of your symptoms. All 3 of those factors weighed together was what I was referring to.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,685
    • Most Online
      3,093

    Newest Member
    jhc
    Joined