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Gluten Free For Three Weeks...major Improvements!
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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

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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.

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Brilliant news :)

Well done for doing what you knew was the right thing.

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If you are in the US, an offical dx would give him accomodations at school due to it.

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Congrats! So glad your little guy is feeling better. :-)

Hopefully his GI will give him a diagnosis based on his response to the diet.

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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!

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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.

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I want to hear more of this! I wish everyone would post their best news!

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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.

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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!

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    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
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