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powerofpositivethinking

Member Since 06 Jan 2013
Offline Last Active Dec 06 2014 06:06 AM
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Posts I've Made

In Topic: Glutened-Little Vent

06 December 2014 - 06:05 AM

thanks everyone  :)  I've been resting more and am definitely getting back to feeling like myself.  I was told the pink coloring is back in my face which is a good sign.  No more dark circles under my eyes and my headaches/brain fog are much better, but my intestinal area is still a bit sore.  The gluten-free diet may be a little challenging at times, but feeling like myself is the best reward.  I do not miss feeling like this regularly at all!


In Topic: Exocrine Pancreatic Insufficiency

04 December 2014 - 07:31 AM

i also read the link on this page saying that supplemental enzymes may or may not be a permanent thing - i'm afraid to try to eat without them lolz :D

 

I ended up being able to go off Creon about two months ago because my elastase testing went from 72 (indicated severe pancreatic insufficiency) up to a 414 (anything over 200 was considered normal), and things had been going really well!  Unfortunately I got glutened sometime last week...can't pinpoint it, and I'm still feeling the effects.  I ended up taking the day off work, which I never do, to just rest.  I know it will pass, but I can't believe I used to think feeling this way all the time was normal.


In Topic: Exocrine Pancreatic Insufficiency

03 December 2014 - 10:27 AM

Wanted to add this PubMed abstract I found.  I couldn't access the full text, but it seems more light is being shed between celiac and its connection to pancreatic insufficiency.

 

http://www.ncbi.nlm....pubmed/25417707


In Topic: Pancreatic Insufficiency

19 October 2014 - 01:50 PM

my GI ordered a MRI of my abdomen and pelvis, small bowel series and a capsule endoscopy.  Those all came back normal with the exception of a ulcer in the illeum section of my small intestine.  I didn't show pancreatitis, so that was ruled out as a cause for EPI, and I didn't have Crohns or CF.  Check out table 4 in this article which lists the different causes of EPI http://www.ncbi.nlm....2/#!po=0.925926

 

I had all these tests done, and when everything came back pretty much normal, my GI decided my EPI was all related to celiac.  I hope this gives you some other ideas!

 

Are you taking your ZenPep with your food and not before or after?  I know Creon works best when taken with your meal.

 

Thank you for the response and the suggestions. I am actually taking 500 mg of Magnesium a day right now, and have been for months. I think the muscle weakness is maybe some other electrolyte, like potassium or calcium. Either way, I still seem to be very easily fatigued, the degree of which varies based on how much or how fatty my BMs are... Sometimes I wonder if I may need to be taking more zenpep, but then I hear of people like you that seem to get better on a much lower dosage! I guess not all cases are the same, but I wish mine would come along a little faster... Can I ask what sort of tests your doctor did to rule out that your EPI wasn't celiac related? My gastro hasn't ordered anything to do so, but I may need to ask him about that.

 

Thanks!


In Topic: Need Help With Tests Results Please

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!!