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Scalloping And Redness Seen During Endoscopy, Moderate Positive Ttg--Has Anyone's Child Had This And Gotten Negative Biopsy Results?


chickpea77

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chickpea77 Rookie

I guess the title of this thread says it all, lol. I am not very good at waiting for results, and our follow up test is almost a month away :(

Just wondering what the likelihood of getting a negative biopsy result is in a 6 year old with this bloodwork along with visible changes during the endoscopy?

He has been gluten free since Wednesday, just curious of your experiences....

Thanks :)


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kareng Grand Master

I guess the title of this thread says it all, lol. I am not very good at waiting for results, and our follow up test is almost a month away :(

Just wondering what the likelihood of getting a negative biopsy result is in a 6 year old with this bloodwork along with visible changes during the endoscopy?

He has been gluten free since Wednesday, just curious of your experiences....

Thanks :)

 

 

I think if the damage is bad enough that they can see it, the biopsies will have to be positive for Celiac.  The villa are the first to be damaged and that is microscopic damage. 

Cara in Boston Enthusiast

I'm guessing that you will get a positive result back.  The damage would need to be pretty extensive for it to be visible.  If for some reason it does come back negative, don't assume he doesn't have celiac.  A positive blood test is a positive blood test.

 

Is he feeling better gluten free?  Sometimes it gets worse before it gets better.

 

Cara

chickpea77 Rookie

Thank you for your responses :)

He has been gluten free since Wednesday and I can already see a difference in him. He has more colour in his cheeks, his face sees fuller, he has been eating a lot more, and the scale has gone up 3 pounds!! Since Wednesday!! I KNOW that he has Celiac Disease, I guess I am just so worried about not having a definitive diagnosis that I am graping for other people's experiences.....

Having to wait a whole month for results is going to make me crazy!!

GottaSki Mentor

A month is crazy -- try calling the doctor's office after a week -- my path is usually back within that time period.  Make sure you ask for written copies of both the doctor's procedure report and the pathology report!

chickpea77 Rookie

Argh.. the Dr said she should have the results approx 2 weeks from the scope.... I will call her then!

As for the time being.... I am slowly going crazy, 1, 2, 3, 4, 5, 6 switch!

kareng Grand Master

Argh.. the Dr said she should have the results approx 2 weeks from the scope.... I will call her then!

As for the time being.... I am slowly going crazy, 1, 2, 3, 4, 5, 6 switch!

 

Mine were about 3 days.  The docs office isn't processing them well!


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chickpea77 Rookie

Waiting, waiting, waiting, lol. I called the Dr's office last Friday and left a message for someone to call me back. A nurse called me back on Monday and apparently the Dr is on vacation until next Tuesday. She told me to call next Tuesday and she would probably give me the results over the phone.

Things are going well here otherwise though. I just watched my son eat 3 slices of gluten free pizza when it has always been a struggle for him to eat one slice of normal pizza without curling up in a ball afterwards! And no more complaining about belly aches after eating! The dark circle seem to have faded from below his eyes somewhat, and his cheeks have colour in them again. 2 weeks and 1 day gluten free and already such a change in his physical ailments and appearance! Such a great feeling when we have spent the past two years watching him waste away and become so pale and ashen.....

I just hope to goodness that the biopsy results come back positive so that we have 100% proof.... I am the worrying kind, and negative results wouldn't convince me to change his diet, but I would always worry that there was something else wrong that the Dr missed. Send some good vibe out into the universe for us if you get the chance if you can! Xo!

1desperateladysaved Proficient

I am happy for that report on improvement!

 

Diana

chickpea77 Rookie

Results are in and he tested......POSITIVE!!!! So happy to have an answer now!!! I am not excited that he has Celiac Disease, but it could be a lot worse. Counting our blessings! Thank you for all of your support through the testing process, and putting up with my craziness! Xoxo! You guys are wonderful!! Thank you!!!

GottaSki Mentor

Results are in and he tested......POSITIVE!!!! So happy to have an answer now!!! I am not excited that he has Celiac Disease, but it could be a lot worse. Counting our blessings! Thank you for all of your support through the testing process, and putting up with my craziness! Xoxo! You guys are wonderful!! Thank you!!!

 

This is reason to be happy!   Testing is such a pain.

 

Even better news is the improvement you have already seen.

 

I am over-the-moon happy for your family :D

 

Let us know if you have any questions.

Cara in Boston Enthusiast

I can totally understand you being happy and excited about him having a positive test result.  It means you can start getting him healthy.  In the first few months you will be BOMBARDED with people giving you advice about his diet ("my neighbor cured herself by eating a little bit of wheat every day . . ").  Get ready to just smile and nod while you know better.  I was also very surprised by the skeptics who simply didn't believe that wheat could make him sick and that I was just trying to control everything by controlling his diet.  People are weird.

 

Be sure to get the whole family tested - I found out I was positive after my son was diagnosed.  

 

Cara

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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