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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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    • egs1707. Are you in Canada?  It's NOT a good idea to go gluten free between now & the GI appt. and here's why.... MOST of us have MUCH stronger reactions to gluten when we go back on it for the endoscopy. A lot of people have had such strong reactions that they have been entirely unable to complete the challenge and have to call it quits. This means they never get an official dx. It's your call, you make the choice. However, I will say that you don't have to eat a lot of gluten, a couple saltines or a slice of bread per day. 
    • You mentioned the tight head. Yes, both my celiac sibling and I had head pressure. Mine was horrible last glutening with eye pain as well. Like someone put a vice around my temples. I swore it felt like a parasite infected my gut, thyroid and brain. It is going away mostly, still have it on and off a bit.  My brother said his naturopath informed him some celiacs get a bit of inflammation in the brain.   
    • Hi All this is my blood test result 1.immunogloblulin serum 203 ( 87-350) 2.Deamidated Gliadin IGA  4 ( 0-19 negative) 3.Deamidated Gliadin IGG 3(0-19 negative) 4.Transglutainase IGA <2 ( 0-3 negative) 5.Transglutainase IGG <2 ( 0-3 negative) does it mean most likely no celiac ? thanks.  
    • At the moment it's microwave rice packets as it needs to be something easy for lunch at work. What do you choose for breakfast? At the moment I have gluten-free porridge oats with fruits but also seeing oats are a bit of a gamble in the early days. Trying to figure out how long a reaction takes to show up i.e. if I feel ropey later in the day is it really lunch as I'm blaming at present or actually is it something from the morning or even night before? The food is the toughest bit for me right now; wasn't that great with it before so will need plenty ideas from you good people... seems I'm in the right place though   
    • I know what you're going through - it's that grieving process and it's tough.  I was diagnosed in 2013, and aside from an occasional pity party, I don't look back. I have my restaurants where I feel safe, I have the food I know I can eat, and I get on with my life.  I'm lucky that I live in a big city with lots of options, but you can make this work, and you will feel better and once you do, you'll stop grieving.  The people on this site helped enormously. It is tough in the beginning to know if you've been 'glutened' vs. just going through withdrawal.  For that reason alone, it's best to avoid restaurants for a little while and be careful at home - just to be sure what's happening.  Eventually you'll be able to get back to your version of 'normal'.  Oh, I also have hypothyroid/hashimoto's.  No big deal, I take synthroid. Quinoa, eggs, nuts and beans for protein.  You don't have to go crazy on the cooking.  Just eat a lot of whole foods.  There are a lot of complicated recipes out there, but now may not be the time.  Rice noodles in veggie bouillon - easy and cheap.  gluten-free pasta with olive oil, parmesan and garlic - easy.  I eat a lot of rice and have never had a problem - you're not getting it out of one of those bulk bins, are you?  That could be contaminated.  Go with packaged.  Do you have access to the Macro Vegetarian brand of prepared rice dishes (in the refrigerated section).  They have several that are gluten free, they're delicious heated and with a little gluten-free soy sauce.  They're my go to on days I don't want to cook. Good luck!  
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