Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Now I'm Confused!


ptkds

Recommended Posts

ptkds Community Regular

Two days ago, the dr's office told me that my dd#2 has celiac disease. Then today the dr calls me and tells me that they got more results in and she is negative, although some other number was high. He said her IgA was fine. So I asked him about IgA deficiency and he said it could be a possiblilty but they would have to do another test on both dd's to check for that because it is a diferent test than the celiac panel that they already did. So now I have to drag my 2 older dd's back to get blood drawn again.

So can someone explain this to me? How can 1 number be high and 1 dr say it is Celiac, then another dr says it isn't because some other number is not high? The 1st time I talked to them, it was my dr who diagnosed me, and for some reason his nurse had my dd's results. But today my dd's pedi called me.

So have a completely confused yall?? :blink: I am really tired right now, so I can't really think straight, much less type!

If you can understand all this, then thanks for reading!!! Please help!!

ptkds


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

If you have celiac disease, one daughter has been diagnosed as well, and one of your second daughter's test results was high, it is VERY likely that it was because of celiac disease as well. If they were my own kids, I'd just put the whole gang on a gluten-free diet, to see how they'll respond to it, and if you can see positive changes.

All that besides it being so much easier for you to just cook gluten-free for everybody, and not having the problem of cross contamination in the house. If your husband wants to eat gluten, he can do it outside the house.

Since celiac disease is genetic, it would make a whole lot of sense if your first doctor was right, and your pd is wrong. Why put the kids through more blood work, when the diet is the best test for young children anyway. The tests are highly unreliable in little kids.

Guest nini

my daughter's test result was negative, mine was positive, yet we both responded very well to the diet. my daughter's symptoms were the same as mine when I was a small child... testing in children is unreliable, if it's positive IT'S POSITIVE, but if it's negative, it only means not positive right now... dietary response is the best indicator. My daughter is 6 and adheres to the diet with no problems. It's all how you approach it. I think you should go with prevention over waiting for confirmed damage since it is genetic and just take all the girls off gluten. It will be less confusing on you that way. And if you want suggestions on how to do the diet on a small budget, there are threads on here already on that subject.

chrissy Collaborator

they obviously aren't up to date on testing or they would have done a total IgA serum to begin with. if the only test that was high was the AGA IGA----then that could explain why one doctor would say positive and another doctor would say negative. do you know which tests they ran?

happygirl Collaborator

My best advice:

Get the results, hard copy (not someone reading them over the phone), and post them on here, word for word. The doctor's office has to get them to you. Call them, tell them what you want, and that you are coming up there to pick them up. :)

We'll help you out!

Laura

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

    2. - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

    3. - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

    4. - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

    5. - Teaganwhowantsanexpltion replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,238
    • Most Online (within 30 mins)
      7,748

    tcpb
    Newest Member
    tcpb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
    • Teaganwhowantsanexpltion
      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.