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pryforma

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  1. My daughter was diagnosed with celiac (biopsy/blood) her gi doctor asked if I wanted to test her siblings since there is a higher chance for celiac actually he said all of us.

     

    He said we could do a blood test , he wouldn't even do a biopsy since my kid has celiac and if  the blood it's positive, for him  that would be enough to diagnoses with celiac if any of the siblings test positive.

     

    Not sure if I should even bother get them tested ...what do you think?

     

    If I do get them tested it should be soon  we cut a lot of  gluten of their diet because of my daughter.

     

     

    Thanks!


  2. Hi I updated about the endoscopy of my daughter on my first post , but I have a question... is it possible to come back negative the biopsy after what doctor saw on the endoscopy? He said to go off gluten but I didn't like the fact the he said before that of the biopsy is negative she does not have celiac :/ regardless we will be gluten free, just wondering what do you all think ....

     

    thank you@!


  3. I agree that she is a celiac. Every single celiac test that she was given produced a positive result; not many around here get such a clear cut diagnosis. Regardless of what her biopsy says (could be negative if the doctors miss the damage - it happens) I would make her diet gluten-free.

     

    You might want to have the doctors check her nutrient levels as celiacs are often low in some. The B's (B12 seems the most commonly low), D, calcium, ferritin and iron, and potassium are often low.

     

    You might want to have the rest of the family checked for celiac as it can run in families. Celiac can be "silent' and present no symptoms so a quick blood test could possibly save someone's health.

     

    Best wishes to your 8 year old.

    Thank you for your reply ,eventually we will all get tested,it was hard to put her back on gluten she got all of her symptoms back , stomachache , paleness , low energy, thank goodness this will be over soon and we will be back on gluten free.


  4. I finally got a copy of the results of my 8 year old, so here it goes...trying to write exactly how it shows

     

    IgE - 116                                               reference range <91 

     

    Gliadin, IgA, tTG Ab IgA 

    IgA       106                                          reference range 41-368

     

     

    Iadin (deamidated ) Ab Pnl , IgA/IgG

    DGP Antibodt IgA      25.67                 reference range <20.00

     

     

    DGP IgA Reference Range

    <20.00         Negative

    20.00-30.00 Weak Positive

    >30.00         Positive  

     

     

    GP Antibody , IgG        44.36          reference range <20.00

     

    DGP IgG Reference Range

     

    <20.00         Negative

    20.00-30.00 Weak Positive

    >30.00         Positive  

     

    TISSUE TRANGSGLUTAMINASE Ab,  IgA 

    tTG Antibody , IgA        98.67          reference range <20.00

     

     

    <20.00         Negative

    20.00-30.00 Weak Positive

    >30.00         Positive 

     

    IgE 116

    DGP Antobody IgA 25.67

    DGP Antobody IgA result    - weak positive

     

    DGP Antobody , IgG 44.36

    DGP Antobody , IgG - Positive

     

    tTg antobody IgA 98.67

    tTg antobody IgA result - Positive

     
    She was off gluten for 10 days when she had the blood test done 
     
    Any opinion?
     
    UPDATE ON THE ENDOSCOPY-
     
    She had her endoscopy today, before it was done I asked her gi doctor how many "pieces" he was gong to take out for the biopsy, I was worried that it wouldn't be enough so when he said 15 to 20  I was pleased because I knew the chances of missing would be very little...
     
    I asked  if  maybe he would be able to tell me anything today, he said that sometimes he can see something , sometimes nothing at all but of course we would talk about after the procedure and  even if he didn't see anything the biopsy would give the results of course.
     
    Mind you she was GLUTEN FREE FOR 3 WEEKS then BACK ON GLUTEN FOR 10  DAYS for the biopsy today. When she had her blood test done she was gluten free for 10 days .
     
    After the biopsy he came back and said  that pretty certain is  celiac from what he saw which was  lots and lots of redness everywhere, he showed me one picture of a small red lump ( can't remember the name) that was ready to burst so with all the inflammation/redness this is it he said to go gluten free from now on....BUT whatever the results were going to be, she was going to be back on gluten free diet today,  I was not going to wait for the biopsy , regardless of the results I was going to get her back on her diet, she feels so much better no way I was going to put her through more pain just because of the results , she even wants to be back on gluten free and she is the pickiest eater so no doubt she feels really crappy when she eats gluten.
     
    A little relieved that we found for sure what is going on with her.
     
    Thank you for the replies .I will update with her biopsy.

  5. Is the doctor willing to do a formal diagnosis of celiac without the endoscopy?  If so, then I probably wouldn't bother with it even though it was very easy both for myself and daughter especially since she's already gluten-free and doing so well with it.

     

    My 9 year old was recently diagnosed (i was diagnosed about a year ago) and we did do the endoscopy with her but her labs were not nearly as conclusive as it the ones you posted above - I'm not an expert by any means but those look pretty significant.  Her doctor indicated that without the confirming endoscopy she wouldn't have a formal diagnosis which could prevent her from treatments as they become available in the future (her doc is at a hospital with a big celiac research center).  She also felt strongly that we should get a baseline so that if her growth and symptoms didn't improve gluten free we would have it as a comparison point.  Bottom line, we wanted her as a patient in the hospital's celiac center so we moved forward and had it done. 

    Thank you , for your reply , yea he is willing to leave as it is but we would never know everything for sure he too wants to give a formal diagnosis so that is why i want to get it done  . I just worry that 10 days on gluten is not enough although she is only been off for 3 /12 weeks . So far she has not complain about her stomach and she is been eating gluten since yesterday .

    Thanks again 


  6. My daughter (she is 8) tested positive for celiac ( blood test) at the time  she was 10 days gluten free, she did test negative one year ago for celiac but her health and growth went downhill from there and the last couple of months got worse so  i decided to cut the gluten and make a doctor appointment as soon as I could.  She started to feel better within a week 

     

    as of 2 days ago she was 3 1/2 weeks off gluten ( she had one day couscous) most of her symptoms disappeared the bloat, hard tummy, the irritability, stomach pain , etc...

    Well yesterday we got the results and her gi doctor said that to make really sure and to fully give her the diagnosis we should do an endoscopy he said it would be up to me... that for some parents the blood test is enough but to see the full picture it would be a good idea to do the endoscopy, I know people have different opinion on this...

     

    so here is the thing

     

     I put her back on gluten she will be on gluten for 10 days before the biopsy (she was only off gluten for 3 1/2 weeks)

    He said that as soon she starts to feel all the symptoms again  it's a good sign that we could see something in the biopsy ( I think that is what he meant )  regardless her appointment is in 10 days. 

    My question is do you think that will be enough time to see something ? I've read so much already but some say it takes months to heal some say days .I don't want to have a false negative. But I don't want to put her on gluten more that I have to.What do you think?

    Thank you for your opinion !

     

     

    I called hr doctor's office for a copy in the meantime I asked for the results and she was telling me over the phone but of course my 2 year old started to scream she said something like

     

     igg 44.3

    ig 98.7

    iga 106

    iga 2567 - (maybe these is not right I think that is what I heard) 
     
    not even sure if it makes sense the results I should have asked for a copy ...

     

    When  i will get the copy and post here :)