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Just to give an update on our six year old son. His antibody tests were negative, but he did have the Celiac gene. We discussed options with his GI (who believes he doesn't have Celiac based on his antibody tests). After some cajoling on my part, he agreed to have us go gluten free for six months. He would consider a diagnosis if my son gains adequate weight. So far we have noticed:
1. A HUGE increase in his appetite! He used to take one or two bites and say he was full (thus the lack of weight gain). He has eaten EVERY meal since becoming gluten free.
2. He is so much happier and easier to be around.
3. He has stopped sweating so profusely. He used to soak the bed at night and have occasional hot flashes.
4. No headaches!!
So, I am convinced!! I'm not entirely sure why we would need an official diagnosis at this point. My son is so happy with the way he feels, he has no issues with turning down gluten-filled sweets. I can't believe after all this time it was gluten that was making him sick. I am one happy mama! Jess
10 replies to this topic
#2
SMDBill
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Posted 28 November 2012 - 03:53 AM
What a wonderful story! It's always great when our little ones get back to their old selves. And you already have your answer for his problem whether or not the doctor agrees 
What a blessing.
What a blessing.
#3
Celiac Mindwarp
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Posted 28 November 2012 - 05:18 AM
Brilliant news
Well done for doing what you knew was the right thing.
Well done for doing what you knew was the right thing.
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein
#4
shadowicewolf
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Posted 28 November 2012 - 05:58 AM
If you are in the US, an offical dx would give him accomodations at school due to it.
#5
Ollie's Mom
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Posted 29 November 2012 - 09:50 AM
Congrats! So glad your little guy is feeling better. :-)
Hopefully his GI will give him a diagnosis based on his response to the diet.
Hopefully his GI will give him a diagnosis based on his response to the diet.
#6
nvsmom
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Posted 29 November 2012 - 11:19 AM
Great!!
Nicole 
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012
CANADIAN
Celiac.com - Celiac Disease Board Moderator
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012
CANADIAN
Celiac.com - Celiac Disease Board Moderator
#7
mamaupupup
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Posted 29 November 2012 - 11:18 PM
Yay! Keep a great log like that! It helps the doctors say, "you're right" as we Mommas are 99.9% of the time
And to point #2: I totally get that! We look at one of our girls and wonder who she is...sweet, compassionate, empathetic, energetic...thank goodness she was diagnosed at 5! She is a different, happier little kid! That alone is worth every second I spend reading labels and baking...
Congrats!
Thinking of you all!
as we Mommas are 99.9% of the time And to point #2: I totally get that! We look at one of our girls and wonder who she is...sweet, compassionate, empathetic, energetic...thank goodness she was diagnosed at 5! She is a different, happier little kid! That alone is worth every second I spend reading labels and baking...
Congrats!
Thinking of you all!
#8
nicolebeth
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Posted 30 November 2012 - 06:30 AM
That's wonderful!
We're doing a trial with our 7yo right now, and aside from feeling better physically, I see many emotional things you're mentioning. He was just unhappy, pale, on edge. He looks so much better now (much more relaxed and calm).
It must be so hard for these little kids to deal with something that has been so constantly bothering them, but they didn't know any different.
I'm sure your doctor will be convinced at some point, especially with all the evidence you have.
We're doing a trial with our 7yo right now, and aside from feeling better physically, I see many emotional things you're mentioning. He was just unhappy, pale, on edge. He looks so much better now (much more relaxed and calm).
It must be so hard for these little kids to deal with something that has been so constantly bothering them, but they didn't know any different.
I'm sure your doctor will be convinced at some point, especially with all the evidence you have.
#9
LFitts
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Posted 15 January 2013 - 12:35 PM
I want to hear more of this! I wish everyone would post their best news!
9 year old daughter diagnosed celiac November / December 2012
Postive endoscopy / biopsy, positive antibody test, positive genetic test
She's been gluten free since diagnosis. I've been gluten free with her since Jan 2013.
#10
kvanrens1
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Posted 16 January 2013 - 09:29 AM
That is wonderful news!! Our daughter had negative tests but also a very positive response to the gluten-free diet. Our Ped GI said he would be willing to provide a letter stating she had Nonceliac Gluten Intolerance for school/camps, etc. Just an option to discuss if you do not get the celiac diagnosis.
Daughter, age 9, is gluten sensitive, growth hormone deficient, pancreatic insufficient (now resolved), severe lactose intolerance, and other food sensitivities
Blood test/biopsy negative for celiac disease
Enterolab positive for gluten sensitivity
DQ7 and DQ9
Gluten Free since March 2012
#11
Mom2_2girls
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Posted 16 January 2013 - 12:26 PM
What a wonderful post! I have also noticed a HUGE difference in how my 5 year old daughter is feeling emotionally. Previously she would have horrible tantrums and become totally unreasonable and we just couldn't understand why. It is amazing how since being gluten-free all that unreasonableness and irritability are gone.
Hope you see some good weigh tgain over the next few months!
Hope you see some good weigh tgain over the next few months!
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