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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Scalloping And Redness Seen During Endoscopy, Moderate Positive Ttg--Has Anyone's Child Had This And Gotten Negative Biopsy Results?
Started by chickpea77, Mar 01 2013 10:51 AM
11 replies to this topic
#1
chickpea77
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Posted 01 March 2013 - 10:51 AM
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
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
#2
kareng
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Let them eat gluten-free cake!
Posted 01 March 2013 - 11:18 AM
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.
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#3
Cara in Boston
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Posted 04 March 2013 - 06:48 AM
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
#4
chickpea77
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Posted 04 March 2013 - 09:26 AM
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!!
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!!
#5
GottaSki
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Posted 04 March 2013 - 03:53 PM
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!
-Lisa
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#6
chickpea77
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Posted 07 March 2013 - 06:05 PM
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!
As for the time being.... I am slowly going crazy, 1, 2, 3, 4, 5, 6 switch!
#7
kareng
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Let them eat gluten-free cake!
Posted 07 March 2013 - 06:12 PM
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!
Celiac.com - Celiac Disease Board Moderator
"I believe that if life gives you lemons, you should make lemonade... And try to find somebody whose life has given them vodka, and have a party" - Ron White
""I like the cover," he said. "Don't Panic. It's the first helpful or intelligible thing anybody's said to me all day."
― Douglas Adams, The Hitchhiker's Guide to the Galaxy
“Life may not be the party that we hoped for…But while we’re here, we should dance.”
#8
chickpea77
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Posted 14 March 2013 - 03:22 PM
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!
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!
#9
1desperateladysaved
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Posted 14 March 2013 - 07:09 PM
I am happy for that report on improvement!
Diana
#10
chickpea77
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Posted 20 March 2013 - 02:05 PM
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!!!
#11
GottaSki
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Posted 20 March 2013 - 02:10 PM
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 
Let us know if you have any questions.
-Lisa
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#12
Cara in Boston
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Posted 21 March 2013 - 09:29 AM
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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