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Nearing A Year :-)
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5 posts in this topic

I can't believe it, but in about one month it'll be my one-year gluten-free anniversary. :-) Quick update:

- I'm still growing, though it's slowing down. I started at 5'4" and I'm now about a half an inch shy of 5'7". I didn't think that was possible at my age!

- GI symptoms totally gone, 'cept the occasional glutening.

- The rash (which I'm almost certain is DH) is relatively under control. It is very sensitive to iodine in addition to gluten.

- No headaches, migraines, nerve pain or tingling, exhaustion, weird "illnesses" (I've gotten sick once in the past 11 months and it was just a cold!), nausea, brain fog, everything is GONE! I was actually diagnosed with sensory processing disorder when I was little and even that has gotten much better! I'm in awe of how amazing I feel! 11 months ago I never would have believed it.

- I can tolerate lactose (in moderation). :-)

I was blood tested in October 2011 which was negative, but at that time I was gluten-lite and my doctor did not inform me that I needed to stay on gluten. Therefore, my primary doctor has told me not to go back on gluten, saying that she thinks it sounds like celiac, and we should wait until better testing comes out. I have a GI doctor appointment in January just to see if I should be doing anything else and/or getting his opinion.

I'm thrilled: I can live my life, handle stress and stay healthy and on top of things. Thank you to everyone who helped me through this. The vitamin, probiotic and digestive enzyme suggestions were invaluable and made such a huge difference. I'm so grateful. I wish I could give everyone hugs! THANK YOU!

Laura

P.S. For those of you struggling right now: things do get better! It is slow, but persistence and patience will both be your friends through the healing process. And questions! Ask lots of questions!

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Oh, I am so pleased for you Laura :D What a difference that has made to your life. I am so glad the people on the forum were of help to you and I wish you continued good health and happiness, and a joyous Christmas. Hugs right back atcha.

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Laura

This is brilliant, what a wonderful change for you

:)

Thanks for sharing your story, this newbie is very happy to hear a good outcome.

Wishing you the best for 2013

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i'm just a month into it and am so glad to hear your story. thanks for the inspiration - and good luck to you!

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Thank you all! I've learned so much... and there is light. :-)

Happy health and healing for 2013!

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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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