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Old 10-31-2014, 11:35 AM #11
EmmasMom2 EmmasMom2 is offline
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Default Additional Results

I'm attaching other blood work results that she had done.

It was her ped doctor who said she wanted to retest because she felt it was inconclusive, some positive and some results were negative.

I will not put her through an endoscopy and hopefully the pediatric gi specialist and I can have a conversation about celiac and where to go from here.... obviously a gluten free diet but what else?

I have not been tested and neither has her dad but I will get tested.

Thank you AnnieB3
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Old 10-31-2014, 03:31 PM #12
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Does that say "Immunoglobulin B?" The one that is 303? It's a bit hard to read. Depending upon what that is, you might need to see an immunologist. There aren't many pediatric immunologists, so you might need to see a "regular" one. What vaccines has she had? It might be a reflection of that.

I thought it was the pediatrician. They aren't gastroenterologists, and have only limited experience with celiac disease. And she isn't an allergist either! A person doesn't have to have allergies and celiac disease at the same time. And celiac disease is not an allergy, but an autoimmune response (a lot of people have that misconception, even doctors!).

You should be pretty happy that those allergy tests were negative. I can't believe they did so many.

You should all have your B12 tested, too! Methylcobalamin (I like Jarrow Formula's brand) is the better form of B12, in case you are deficient. I take it daily (I had a severe deficiency diagnosed in 1999).

There is gluten in a lot of things, not only food. Some toothpastes have it. The glue on envelopes, too. You will probably have to do a lot of label reading! Even some hair coloring has gluten in it. Shampoo too!

Basic information on CD:

http://celiac.org/celiac-disease/wha...eliac-disease/

There are good tips on going GF on this site:

http://www.celiac.com

You should know that there is not a definitive answer on whether oats are okay to eat or not. I listen to my stomach, not studies, and it told me to NOT eat oats! I got sick every time I tried it and I never got sick from oats before getting CD.

There are a lot of GF sources out there. www.iherb.com has GF foods, as do a lot of stores. If you can have as many whole foods as possible, that helps.

One of the best flours I've found is "Better Batter." It's an all-purpose flour for baking and cooking.

There are great tips on this site as well.

What else do you need to know? It can be overwhelming, but just take it a step at a time. She can even have cross contamination if you don't use separate cooking and baking pans, etc.

I really think your daughter needs to go GF immediately. Don't wait for a conversation. She is having damage done to her small intestines and it takes a while for that to be repaired.

I hope you guys can get used to this new GF world! It's not that bad, really. And kids are so great at adapting!


Annie

Last edited by AnnieB3; 10-31-2014 at 05:29 PM.
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Old 10-31-2014, 08:04 PM #13
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It is actually an E not B.
She is up to date on all vaccinations. Her pediatrition was the on who ordered the tests. She ordered allergy and celiac just to be sure. Thank you for the links!! A good friend of mine has CD and she has been filling me in but to read stuff on mine own is great.
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Old 11-01-2014, 06:59 AM #14
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Default The IgE--

--or immunoglobulin E testing is to measure her overall allergic tendency. Immunoglobulin E is the substance that causes most allergic reactions when they occur.

Don't have much to add to what Annie3B said--she's quite on target--but I also include this source, linked right through Neurotalk here, as the most comprehensive database of medical and other information yet collected about celiac, gluten, and related topics:

https://sites.google.com/site/jccglutenfree/

This was put together by our own Cara, jccglutenfree, whose family story is fascinating, and I give her credit for almost singlehandedly making people more aware of this condition in the early days of the Internet (she's been adding to the File for going on two decades, and there is stuff there it's hard to find anywhere else).

By the way, there are subtle signs of possible beginning malabsorption in the other lab results--her calcium level is relatively low for a young child, and the low BUN could point to not absorbing quite enough protein (blood urea nitrogen is usually a little higher than that) for example. It wouldn't be a bad idea to get her B12 and D levels tested. But, of course, the biggest thing is getting her on a gluten-free diet.
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Old 11-01-2014, 11:19 AM #15
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Cara rocks!

The IgE could be elevated due to the Celiac. That one would be worth retesting in a few months after being GF!

Annie
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Old 11-01-2014, 06:29 PM #16
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Thank you all so very much! I will look into everything that has been suggested. I will keep you updated on her progress.

I think it is wonderful that you all take time to help and educate the people who need it like me.

Again thank you from Emma and I.
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Old 11-01-2014, 06:35 PM #17
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Default Forgot to mention...

Neither her pediatrician or GI specialist mentioned anything about her blood test results like possible signs of malabsorption or low calcium and BUN. Thank you for taking the time to mention the above!!
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