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I Have The World's Best Friend :)
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8 posts in this topic

I met my best friend and her 2 kids at the Zoo yesterday with my 2 kids. I always buy lunch there, she always packs her own. Anyhow, after finding a fruit plate in the cafeteria (I was getting really excited about the fries, which are cooked in their own vat, but then I saw them dumping them into the same serving dish as the chicken fingers and serving them with the same scoop, sigh), we went out on the lawn to eat and God bless her, she pulls out a bag of rice cakes and cheese and tells me she is trying to cut down on bread! Part of it may be true, but I also know her well enough to know that she didn't want to sit there and eat bread in front of me! In fact, except for a cereal bar she had for her baby, everything she brought yesterday was gluten-free! I don't expect people to eat my diet, but just knowing someone cares enough to do that really touched me, but I shouldn't be surprised because she is just that kind of girl!

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Awww, that is nice!

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I went to my friends house for a BBQ, and my friend made lettuce burgers, made the boys keep the buns on the other side of the room and even had a gluten-free designated dishcloth for me set aside. I felt so loved. Those gestures mean so much.

I'm happy you had that experience.

Elonwy

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You guys are lucky, that is so sweet :) I've had friends buy me gluten-free food before, which was really nice.

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Awww.... Such nice friends! :-)

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It's great when friends understand the diet you have to follow. My friends are super, they always ask questions before they serve food regarding how to keep it gluten-free if possible. It makes this disease easier to deal with when you have a lot of support.

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My best friend had a gluten free birthday cake made for me. She works with a woman who makes all sorts of baked goods and she asked her to make me a gluten-free birthday cake. She is the most considerate and thoughtful person ever.

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My best friend and my sister in law are very careful with my gluten issues and I love that they are.

Susan

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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