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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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    • Are you vegan or vegetarian?   I am concerned about your lack of protein and fats in your diet.  These diets can work when you are also gluten free, but as a celiac you can be malnourished.  It is hard to heal when you are slowly starving yourself.   No offense, but some newly diagnosed celiacs end up with food disorders.  Perhaps working with a dietician can help.   What actually are your blood glucose levels?  Did you know that just as Hashimoto's is common with celiacs, so is type 1 diabetes?   Ask your doctor for antibodies testing for Type 1 diabetes (TD1), if your blood glucose levels are not in the normal  range.  You can develop TD1 (LADA) at anytime.   For adults there is a "honeymoon" period which can last for up to five years.  Be on the watch for other AI issues (besides TD1) too.   It is so important to monitor your health after a celiac disease diagnosis!  
    • He was not IGA deficient.  I'm still hoping we can convince the base GI to approve his referral.   Thanks for that thread about TTG Igg.  That's exactly what I was wondering. 
    • Star Anise Foods  rice paper and spring rolls are gluten free they have brown and white rice versions. I have not had issues with these in the past when I used to use them. Should be able to find them on amazon.
    • Hi strawberrymoon, If you are having a blood sugar problem, that can cause nerve damage and tingling.  Nerve damage is often associated with diabetes.  You can ask your doctor to check your A1C level to get an idea how it has been doing. It would probably help your glucose levels to stick with a paleo style diet, avoiding most carbs.  Carbs and meats have a different affect on blood glucose.  Carbs tend to spike blood glucose while meats even it out. There are a lot of negative changes that can happen with high blood glucose.  It is wise to try and get it under control ASAP.  My brother has lost most of his vision in one eye now from high blood glucose.  And he has the tingling symptoms you described.  The tingling can progress to pain in time.  My brother chose to ignore his diabetes and is paying the price for it.  He is doing better at it now but the damage is done. Yes, B-12 deficiency can cause those kind of nerve symptoms.  But if you have high blood sugar that is the more common cause.   Diabetes is not a rare condition.
    • I have been living in Ho Chi Minh City, Vietnam, for two years, and finding gluten-free food is proving more difficult than I thought, even if I am cooking my own food. Wheat flour, called "bot mi" in Vietnamese, seems to creep into a lot of stuff nowadays. What's more, manufacturers do not feel it is important to list bot mi in the ingredients on a food's packaging unless it is a principle ingredient in the food. In other words, soy sauces or wraps with just a tiny bit of wheat flour added to add a touch of thickness or pliability are not guaranteed to list the ingredient. For some genetic reason, Vietnamese people are not nearly as susceptible to food allergies as Westerners - it probably has something to do with exposure to less hygenic foodstuffs having built up an immunity over hundreds of years - so it is not really considered important to split hairs in that department over here. Anyway, I love rice paper but have often gotten glutened by it when I have it. Can any celiac who could tell if a product had gluten by more than just the ingredient list on the back let me know a definitively gluten-free rice paper brand? I know that very few rice paper brands actually list wheat flour in the ingredients, but I don't 100% trust the ingredients list for products made by Vietnamese companies. Call me paranoid. By the way, I have a neurological condition that irreversably breaks down my immune system when I ingest gluten, so I don't want to experiment with trial by fire here.
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