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powerofpositivethinking

Member Since 06 Jan 2013
Offline Last Active Private
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Posts I've Made

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!!


In Topic: Utz Potato Chips

18 October 2014 - 05:02 AM

I sent this to Utz:

 

To whom it may concern:

 
I absolutely loved eating your Utz Natural Gourmet Medley chips!  As an individual with celiac disease, I was very sad when I realized the new packaging for these chips contained the new allergen warning, "Processed on a production line with other products that contain milk, wheat and soy."  After searching unsuccessfully for the past few months trying to find a substitute for your chips, I decided I'd at least try this e-mail.  *The product link is included at the bottom of this e-mail for further clarification.
 
Is there any way these chips can be made on a line that doesn't come into contact with wheat and soy, and can be labeled once again a gluten-free food?  I don't know all the logistics of your processing, and perhaps running these chips on the same lines as wheat and milk is more cost effective, but if there's any way they can be made on a different line, you would have a happy customer once again.
 
Although I live in Delaware now, I grew-up in Central PA, and have always loved Utz chips!  In fact, my sister lives in Hanover, and I've been to your factory and taken the tour.  I realize my request to run these chips on another line might not be possible, but I appreciate your consideration.  Thank you.
 
I received this response:
 
Thank you for taking the time to express your concerns. I have made your comments heard in our Marketing Department and Quality Control to see what can be done about this. Hopefully, we can get this changed back in the near future.

Sincerely,
UTZ QUALITY FOODS, INC
Customer Care Center
Diana
 
Here's hoping they change things back because I loved those chips!!

In Topic: Pancreatic Insufficiency

18 October 2014 - 04:21 AM

I would look into taking a magnesium supplement for your muscle weakness.  However I would caution you to start out on a low dose and slowly increase to find your threshold because if you take too much it brings on the big D.  I've had my magnesium levels tested various times, and each time they come back normal, however I had deficiency symptoms like muscle twitching and whole body spasms where it felt like I was falling in bed.  Before going gluten free, there was a period where my leg bones hurt all the time...not normal.  I think the important thing to note is that even if you have a normal blood level for magnesium, only 1% of it circulates in your blood, so if you have symptoms, you may benefit from a supplement.  I've told both my GP and GI doctor that I feel better when I take magnesium because it helps my muscles relax and helps me use the restroom.  I'm a former big C sufferer.  They were both supportive that I continue to take it.  I wrote more about it in this thread from May http://www.celiac.co...eral-magnesium/

 

This is a good article too: http://glutenfreewor...-and-dangerous/

 

The GNC Super Magnesium pills are 400mg dosage, and now I only have to usually take one or two to get the same effect as four of them and there were a few times I had to take five of them.  I'm happy to say that I did receive my fat malabsorption tests back, and to my surprise and happiness, I am no longer malabsorbing either neutral or total fat!!  I have a few more doses of Creon left, and then it's time to see what happens when I go off of it.  If I start to get random bruising again, that will be a big sign to me that my Vitamin K has decreased again.  

 

Random bruising was a symptom of malabsorption for me.  Here's my progression of Vitamin K.

 

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.)

 

My GI ran a lot of tests just to make sure the EPI was related to celiac and nothing else.  I think my pancreas was just burning out from years of gluten ingestion, and it does seem that all it needed was a kick start from the Creon.  Going gluten free at first didn't solve everything because of the underlying problem of fat malabsorption and EPI.  After those were discovered, now things have been progressing quickly.  My levels jumped a lot faster than in this study, but I'm also thirty years younger than the mean age evaluated.  http://www.ncbi.nlm....pubmed/20458623 

 

Be persistent because you are your own advocate.  I didn't present with the classic fat malabsorption symptoms, but something wasn't checking out, and now things are moving along.  I hope improvement comes quickly for you!!  

 

 

Thank you for the response... I am a 23 year old male, should have mentioned that! :) It's great to talk to someone who is going through something similar. I actually have referenced that thread several times, it's very helpful, thank you for posting all of that research. My vitamin D absolutely plummets if I neglect to supplement, but my levels have been good with supplementation.

 

Have you had any sort of symptoms that you can attribute to your malabsorption? I have been dealing with severe weakness (muscle weakness, easily fatigued, etc.) for quite some time now because of this, and I am not even able to work at this point. My potassium was also dropping for a while after having large BMs, but that seems to have improved. My BMs in terms of frequency, consistency, seem to be improving veerrrrry verrryyy slowly, along with the weakness and fatigue to some extent. The progress seems to be so slow and uneven sometimes (I'll have a relatively normal BM one day, and the next have horrible cramping and diarrhea), that it's hard to convince myself this is even working. I'm also working with a GI doctor that initially doubted I even had Celiac disease, and doesn't really seem to be able to make the connection between Celiac and EPI, which can be frustrating to say the least.

 

How quickly has progress come for you? I have been taking them since June, so about 4 months now. I'm taking Zenpep 100,000 per meal and 20,000 with a snack... I just want my job and my life back!

Thanks :)


In Topic: Recovery Happens. Believe It!

04 October 2014 - 05:37 AM

I love reading posts like this!  Glad you are improving, and always a great reminder that good things will happen in time  :)