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Finally Some Excellent News...

LauraB0927

By LauraB0927
in Coping with Celiac Disease

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LauraB0927 Apprentice
LauraB0927
Posted

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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Lisa Mentor
Lisa
Posted

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

nvsmom Community Regular
nvsmom
Posted

Congrats!!  That's awesome!  :D

1desperateladysaved Proficient
1desperateladysaved
Posted

Super!

Adalaide Mentor
Adalaide
Posted

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

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Brilliant news, well done :)

Thanks for inspiring those of us new to the journey

GF Lover Rising Star
GF Lover
Posted

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 Open Original Shared Link

 

Colleen 

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IrishHeart Veteran
IrishHeart
Posted

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

julissa Explorer
julissa
Posted

so happy for you! thanks for sharing.

GFinDC Veteran
GFinDC
Posted

That's great! :)

 

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

 

Christine0125 Contributor
Christine0125
Posted

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.

LauraB0927 Apprentice
LauraB0927
Posted
  • Author

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!!!!

Coryad Rookie
Coryad
Posted

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

kristenloeh Community Regular
kristenloeh
Posted

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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    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
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      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
    • trents
      Coeliac or not coeliac

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      My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful, especially when the test results are marginal. But a result of 87.4 is probably out of the normal range and into the positive range for any lab's scale. But back to the question of why your endoscopy/biopsy didn't show damage despite significantly positive TTG. Because they took the trouble to take seven samples, it is not likely they missed damage because of it being patchy. The other possibility is that there hasn't been time for the damage to show up. How long have you been experiencing the symptoms you describe in your first post? Having said all that, there are other medical conditions that can cause elevated TTG-IGA values and sometimes they are transient issues. I think it would be wise to ask for another TTG-IGA before the repeat endoscopy to see if it is still high.  Knitty kitty's suggestion of getting genetic testing done is also something to think about. About 35% of the general population will have one or both genes that are markers for the potential to develop active celiac disease but only about 1% of the population actually develop celiac disease. So, having a celiac potential gene cannot be used to definitively diagnose celiac disease but it can be realistically used to rule it out if you don't have either of the genes. If your symptoms persist, and all testing is complete and the follow-up endoscopy/biopsy still shows no damage, you should consider trialing a gluten free diet for a few months to see if symptoms improve. If not celiac disease, you could have NCGS (Non Celiac Gluten Sensitivity). 
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