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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, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

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 :)

 

Colleen


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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!


  • 1

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

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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-Lisa

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

Get PROPERLY tested BEFORE REMOVING GLUTEN.

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#126 powerofpositivethinking

 
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Posted 18 October 2014 - 05:37 AM

back to update after getting all my follow-up testing completed.  For reference, I am a 28 year old female.  warning...long post ahead  :)

 

Back in August I went to my GP to have my yearly exam.  Some things of note:

 

-My TSH has gone from a 2.490 back in April 2012 to a .945 in August 2014.

-My Vitamin B12 has gone from a 824 in February 2013 to a 521 in August 2014.  I believe this is related to fat malabsorption/EPI, but mainly related to the I haven't been supplementing this one regularly, so I'm back on that.

-Vitamin A has a ref. range of 18-77 and mine was 46 in February 2013 and 30 in August 2014

-Vitamin E has a ref. range of 4.6-17.8 and my level was 11.2 in February 2013 and 9.6 in August 2014

-Vitamin D has a ref. range  of 30-100  My level has been 25.3 in February 2013, 35.1 in May 2013, 28.3 in June 2013, 40.7 in August 2013, 38.4 in December 2013 and 31.8 in August 2014.  It's bounced around, but still not high enough, so my GP put me back on the 50000 iu once a week dose for the foreseeable future.

-My celiac panel consisting of TTG IGA/IGG, DGP IGA/IGG, Total IGA and EMA continues to be negative, except that nagging DGP IGG marker haha

-My lab's normal reference range for DGP IGG is negative 0-19, weak positive 20-30 and strong positive >30

   *Pre-gluten-free my levels were 43/41 back in Jan/Feb 2013

   * Now gluten-free-32 in June 2013

   * 24 in December 2013

   * 28 in August 2014

   -This is a little frustrating because I can't get this level to drop.  I eat out very occasionally, and other than that I am as gluten-free as humanly possible.  I keep coming back to this article, and the fact that my body lines up with this statement, ""One possible explanation of the persistence of antibodies against dGP despite complete removal of gluten from the diet is the presence of T-cell clones that have evolved antigen independence and continue to stimulate dGP antibody-secreting plasma cells.[24] This phenomenon has been previously described, and pools of memory T- and B-cells can be maintained at constant levels for years even in the absence of the eliciting antigen.[45,46] In addition, plasma cells can continuously secrete antibody even after the disappearance of memory cells.[47] Further studies will be necessary to confirm the presence of dGP-specific memory B-cells or plasma cells in NRCD patients. Therefore, the mechanism responsible for the persistence of anti-dGP IgG antibodies remains to be elucidated."  http://celiac.org/bl...uten-free-diet/

 

 

Now onto the good stuff :) After being diagnosed with neutral and total fat malabsoprtion and EPI earlier this year, I've been on a 48,000 unit dose of Creon with meals and a 24,000 dose with snacks since April.  My pancreatic elastase level was at a 72 in March 2014 with a reference range of anything under 100 indicating severe pancreatic insufficiency, 100-200 indicating moderate pancreatic insufficiency and over 200 being normal.  I am happy to say that my September 2014 level was a 414!!  I had all the testing run earlier this year to make sure EPI was related to celiac and my levels climbed even faster than in this study, but I am 30 years younger than the mean age evaluated http://www.ncbi.nlm....pubmed/20458623

 

My February 2014 testing showed positive for both neutral and total fat malabsorption, and my October 2014 testing showed that I am no longer malabsorbing fat!  My Vitamin K has done the following:

 

February 2013 <0.13 with a normal range of 0.28-1.78

June 2013          0.16

December 2013 0.18 (After this test, my GI then tested me for fat malabsorption.  I had been taking a supplement that was 1,000 mcg of Vitamin K which is equal to 1250% of your daily value.  I was taking 7 times that amount at his recommendation for two weeks intermittently, and the levels weren't jumping like they should have been.)

August 2014       0.34 (I had been on Creon since April 2014, so I attribute the jump in the level to that.)

 

 

Everything is starting to work itself out!  As soon as my current prescription of Creon runs out, I was told I am allowed to go off it to see how I feel.  If I start to randomly bruise again, it will indicate a problem with Vitamin K.  Sadly, my fantastic GI left the practice in August, so I'm seeing another one within that same practice.  I'll always be thankful for all of the help from this board and from a doctor that actually listened.  I actually wrote him a thank you note  :)   He could have simply said you aren't losing weight without trying, you can't possibly have fat malabsorption or EPI, but he listened and tested me and now everything is coming together.  

 

I still occasionally get bloated, have problems with C, and sometimes my stool sticks to the bowl, but now I can genuinely attribute that to stress and other intolerances.  I have a problem when doctors attribute everything to stress right away because you're female <_< I still take magnesium because it's a wonder mineral for me, a daily multi and 50000 units of Vitamin D once a week.  I'm more in tune with my body about which foods make me feel good, and what I need to stay away from.  I really don't care that my diet may not be what's recommended by the FDA because I've found the foods that are right for me.  

 

So the plan for now is to go off the Creon, and be aware if anything changes.  I'm so thankful to finally see everything falling into place!!


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

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

Happy to have answers  :) 


#127 nvsmom

 
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Posted 18 October 2014 - 08:07 AM

Lookin' good.  :) 


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