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

Needing Reassurance :-)
0

4 posts in this topic

ok 3 months gluten free.

diagnosed by biopsy and gene test. negative blood work. specialist says prob celiac. response to diet at this early stage is promising.

BUT

i can not stop focusing on the negative blood test. the blood test was for AGA IGG and TTG but no total IgA level test as the pathology believes its not needed with the high sensitivity with that test. Both results did not provide numbers, just that they were under 20 and 5 respectively.

GI Dr wont say 100% until a year from now when she sees the damage gone on new biopsy and then wants to do a gluten challenge!

so is a positive biopsy (moderate damage, we don't use marsh system in Australia but based on what Dr said it would be marsh 3) and HLA-DQ8 gene enough to say yes?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Yes. If you had a positive biopsy get on the diet even though the bloods were negative. If they want to rebiopsy in a year to see how you have healed that would not be a bad idea but personally I would skip the gluten challenge. You will likely do enough of those accidentally while learning the ins and outs of the diet.

1

Share this post


Link to post
Share on other sites

Ditto the above. If the damage heals on a gluten-free diet, you have your answer. Silly to go thru a miserable gluten challenge and damage yourself all over again!

Personally, if you feel better on the gluten-free diet, I would not even do the follow up endoscopy.

0

Share this post


Link to post
Share on other sites

Sounds solid to me. A lot of people don't have all positive results from all the tests, just some of them. That's why they try so many!

My blood tests were negative at first and we couldn't do a biopsy at all because my duodenum is too inflamed and ulcered. Second round of tests partly a strong positive and combined with very clear (bad) results when I tried eating gluten, my doc said that was good enough for him. (There were other factors, too, but too long to go into.)

If your biopsy showed the damage, sounds like celiac to me.

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
      104,144
    • Total Posts
      919,569
  • Topics

  • Posts

    • 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!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

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

    Newest Member
    lolobaggins
    Joined