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Quick Thank You
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6 posts in this topic

I thought I should just write a quick thank you to all of you out there on this board. Over the past 4 months of utter confusion about the diet...and not exactly complete understanding from my family (who's actually very wonderful, but just a bit clueless - a friend said to me on the phone yesterday "Hey, it'll be great when you grow out of this and can eat normal again in a few years")....I've learned more on this board than I've been able to anywhere else.

Anyway - to your health - AmandaD

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Amanda, I agree with you wholeheartedly! My doctor handed me a pamplet when I was diagnosed, and that was the guidance I had - I didn't understand about cross contamination at all, and was still being glutened often. Thanks to this board, I feel like I'm becoming a pro, slowly but surely.

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MUUUUUUCHOOOOOOO THANKS from me too! I don't know what I would do without you guys!

You're the best! Muah! :lol::D

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I want to thank some of you new Celiacs as well, you are bringing up things that I haven't thought of in years. Like 17 years ago I was told not to drink root-beer because it has malt, so I never bothered checking into the new products. So, just this morning from a new Celiac I learn that I can have A&W root beer. :lol: A&W ... here I come. I think I'll bring a bottle home and make a float. gluten-free ice-cream of course.

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I agree, you guys are the best! I love when someone asks a question that i know the answer to, b/c it makes me so happy to be able to give back to those that have gotten me through the past 7 months! I have no idea how hard this would have been w/o this board, but thankfully, ill never have to know. You all rock! :D

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I think I learn something new EVERY DAY on this site. It is the best for dealing with all the issues that surround the confusion of having to live this gluten free life in a gluten filled world.

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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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