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Need Help With Tests Results Please

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#121 powerofpositivethinking


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Posted 22 March 2014 - 03:20 AM

so after having fat malabsorption come back positive, I was able to get fecal elastase testing done to test for exocrine pancreatic insufficiency.  more on that in this thread: http://www.celiac.co...-and-questions/


I had another appointment yesterday, and anything below 100 indicates severe pancreatic insufficiency, and my LabCorp result was a 72.  After I finish testing, I will begin taking the prescription based Creon enzymes.  


Since I have Vitamin K deficiency, fat malabsorption and now confirmed pancreatic insufficiency, I asked the GI about cystic fibrosis testing since those are three symptoms.  I don't believe I have it but said I would feel better if it could be ruled out since it can be diagnosed in adults.  After he makes some calls to the insurance company to make sure I don't get a huge bill, I will most likely be gene tested.  


I have a blood script to get tested for ANA, rheumatoid factor, IGG 4 to test for autoimmune pancreatitis and HGB A1C, which I know is a test related to diabetes  :(  I'm also getting an MRI of my abdomen this week, capsule endoscopy and possible small bowel follow through the following week.


I am thankful the GI is being thorough, and my hope is that during the capsule endoscopy, some villi damage is seen in my jejunum and this can all be called celiac related, I can start taking the Creon, and I can be finished with testing.  I've been strictly gluten free for over a year, and I'm not sure if any damage will still be there, but since I'm still having malabsorption problems, I'm hoping it will be visible.


I'm one of those that if you look at me, I look perfectly fine and just slightly overweight.  I'm pretty much always in a great mood now because my mental health has improved soooooo much.  Thankfully my family has really come around, and my parents informed me the other week that they will slowly be getting rid of of gluten products and replacing them with gluten free.  This was a HUGE turnaround for them because I've written in several other threads how my Dad commented, "Can't you eat a few breadcrumbs?"  Now when I go to visit it won't be such a battle.  I've held strong, which has not always been easy for me, but really helped me build my strength and confidence over this past year.  


Even though my insides are still jumbled, with this mental clarity, bring on the testing and results, and I just have to keep remembering everything happens for a reason.

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Diagnosed with celiac disease, fat malabsorption, severe pancreatic insufficiency (taking Creon) and vitamin K and D deficiency

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 

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#122 GF Lover

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Posted 22 March 2014 - 04:51 AM

Im so glad you have kept pushing for answers and are getting them now.  Good to hear you are feeling better and the parents are coming around.  Things are definately looking up for you !!  It's much easier to deal with challenges once you know what they are :)



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#123 nvsmom



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Posted 22 March 2014 - 03:12 PM

Yep. Knowledge is power, and you are on your way.  :)

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#124 powerofpositivethinking


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Posted 18 April 2014 - 04:48 AM

just copying and pasting my update from another thread: yesterday was my follow-up GI appointment, and it went really well!  He reviewed that my MRIs and small bowel series were all normal, and then came the capsule.  He said he didn't see any blunting, but he did find an ulcer in the ileum and he said there could have been more but it was all dependent on how the capsule moved.  


When it comes to the pancreatic insufficiency diagnosis, I know that the MRIs would have shown Crohn's, so that was ruled out and I never have an urgent need to use the restroom anyway, pancreatitis was ruled out through the MRIs, everything else was ruled out except celiac, so I finally got doctor diagnosed with celiac disease.  Out of all the causes for pancreatic insufficiency, celiac is the best one since it means my system just needs a jump start!  I'm picking up my prescription for Creon later today, and I'm hoping this will be the final step to say goodbye bloating and stool sticking to the toilet!!  I'm supposed to be following up in 3-6 months to be retested for fat malabsorption, fecal elastase and the celiac antibodies.  


I'm so glad I found this site because if I would have listened to my GI last year when he seemed to think that positive DGP IgG test wasn't a big deal, I would still be eating gluten and probably feeling much worse!  Now he knows differently, and I did say at the end of my appointment yesterday how appreciative and thankful I am that he listens to what I have to say and takes it into consideration.  I realize that is a rarity for doctors, and I'm extremely grateful!


this study is encouraging! http://www.ncbi.nlm....pubmed/20458623


Happy almost Easter!

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Diagnosed with celiac disease, fat malabsorption, severe pancreatic insufficiency (taking Creon) and vitamin K and D deficiency

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 

#125 GottaSki


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Posted 18 April 2014 - 05:10 AM

Great report!


Glad things are mostly normal and generally improving! 


Finding a doctor that will listen is priceless -- they don't need to know it all -- they need to be open to considering all possibilities and now you have one!!!!


Thanks for sharing :)

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Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS


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