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Finally Some Excellent News...
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Finally some good news - after an unexpected, shocker diagnosis on May 3, 2012, many dietitian appointments, 2 endoscopies, 1 colonoscopy, 1 capsule test, and a partridge in a pear tree later, I finally got the news from my GI doc that my TTG levels are within normal range and an intestinal biopsy confirmed that my villi have returned back to normal!!!  The good news seems surreal after so many bumps in the road...

 

I didnt write this to brag - rather to lend some support to those of you who may be struggling or thinking that things cant get better.  It hasn't been easy - and this is coming from a girl who lived off of chicken fingers, pizza, and macaroni and cheese for most of her life.  Yes, I had to change most of my lifestyle habits, and yes, there have been many accidental slip-ups, tears, and feelings of anger/frustration along the way.  But it DOES get better....thanks to everyone on this forum who have listened to me vent, provided support when I needed it, and helped me get on the road to being healthy.  I'll be sure to continue to return the favor where ever possible!! 

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So very happy for you LauraB!  Your inspirational post can only serve as motivation, when there are down times, for the many who visit here and are struggling daily.  Thank you! 

 

Life is good! :D

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Congrats!!  That's awesome!  :D

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Woohoo!!! Gotta watch out for those partridges huh?

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Brilliant news, well done :)

Thanks for inspiring those of us new to the journey

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Many kudos to you Laura.  That is a great accomplishment in only a year.  Very happy for you.

 

By the way,  I can't stop thinking about the partridge and the tree awkward-smile-smiley-emoticon.png

 

Colleen 

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blow.gif

 

Good for you, hon! I noticed from the beginning that you have a mega-positive attitude and you did your homework and you tamed the beast.

A celiac DX is not the end of the world (though many view it that way at first) and you're proof that healing happens.

 

Rock on, little sister! Thanks for sharing your success story. It helps in so many ways.

hugs, IH

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so happy for you! thanks for sharing.

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That's great! :)

 

I can't believe I get to be the first person to say "It only gets easier from here!". :D

 

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Yay!

Out of curiosity... Was your follow up endoscopy routine follow-up. I am approaching a year since diagnosis and wondering if another endoscopy will be recommended. Personally my symptoms have improved but not 100% and it makes me wonder how healed I am.

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Thank you everyone!!!

 

Christine - Yes, my endoscopy was a 1 year follow-up...the capsule/video test I took in October showed continued damage in my duodenum (even though my TTG levels dropped significantly) so the doctor just wanted to do another biopsy just to make sure that I continued to heal.  I was curious also (and needed a little conformation that I was making some progress) so we agreed to go ahead and do the one year follow-up endoscopy and biopsy.  My symptoms when I get glutened are mostly some bloating, but mainly fatigue and joint pain.  Since I work full time and attend nursing school in the evenings, I'm never really sure whether the fatigue is gluten related or because I'm so busy and tired.  So the endoscopy was a way for me to really tell how I've been doing.  I hope your one year follow up goes well!!!!

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Woo hoo!!!  Good to know there is light at the end of this tunnel!!  :D

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Awesome! All of my blood work came back in normal ranges a couple of months ago as well, but I need to find a new GI doc to do my follow up endo to make sure I'm totally healing the way I need to be. Congrats! You were diagnosed only a month after me!

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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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