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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Need Help With Tests Results Please
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132 posts in this topic

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/blog/2014/03/10/antibody-linked-to-celiac-disease-that-does-not-respond-to-gluten-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.nih.gov/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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Haven't been back to update in a long time, but I'm doing great!!  My vitamin/mineral levels are normal, and the only time now I get a minimally backed up digestive system is when I'm under a great deal of stress.  I'm perfectly fine accepting that reason now instead of doctors pawning everything off on stress.  I moved into Philadelphia and started a new job, been dating and just enjoying life in general. 

Gluten may have made my twenties not the most enjoyable, but it makes me so thankful for what I have and feel now.  For anyone reading this trying to figure things out, trust me it's worth it!  I've been going with the mentality, "Everything will work out," and it really has :D

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So glad to hear from you!  It is inspiring to know that you CAN get well!  :)

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Wonderful to hear the good stories! Thanks so much for the update.

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That's wonderful!  I'm so glad you came back with that update.  Your story will give hope you others.:)

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First the positive!  My Vitamin D is now a 57.6.  Highest it's ever been!!  I randomly still take a 50000 iu every few weeks since I still have them, so that probably helps.  However I went for my yearly physical and previous to going I noticed I was starting to bruise again easily.  Overall I'm feeling good, but a bit more tired in general.  I got my blood test results back, and my Vitamin K1 is the lowest it's been in years.  LabCorp changed their interval reference, but it reads:

Vitamin K1 My result: <0.13 and the reference range is 0.13-1.88

September 2015 it was at a .30, so that's bumming me out.

I don't know what my DGP IGG is because LabCorp now has a reflex test and since my IGA levels have always been normal, and the only positive I've ever had was the DGP IGG, my doctor will have to specifically write I need that test again.  It's going to be run when I get my Vitamin K1 retested after supplementing again in about a month.  

Here's my cholesterol through the years.  It's the lowest it's been which would be fine if my diet wasn't high in fat: 

Fasting October 2010:         Total 171     HDL 52     LDL 96                          Tri 116

Non-Fasting April 2012:       Total 153     HDL 60     LDL NA                         Tri NA

Fasting April 2013:               Total 135      HDL 52     LDL Did not register   Tri Less than 45

Fasting July 2013:                 Total 155     HDL 63     LDL 82                           Tri 49     VLDL 10

Fasting April 2014:               Total 145     HDL 57     LDL Did not register     Tri Less than 45

Fasting April 2015:               Total 159     HDL 55     LDL Did not register     Tri Less than 45

Fasting November 2015:     Total 140     HDL 51     LDL 79                            Tri 46

Fasting November 2016:     Total 127     HDL 51     LDL 68                             Tri 40    VLDL 8

     

This is the lowest it's ever been and my diet is high in fat which makes me think perhaps my fat malabsorption is back.  I know you need cholesterol and triglycerides, so I'm just feeling a bit frustrated.  I have a lot of great things happening in my life right now, so the thought of finding a new GI and going through more testing is frustrating.  My next step is supplementing the Vitamin K1 then getting that retested in a month with the DGP IGG.  

Knowledge is power, but I've been feeling a bit down after getting these results earlier this week and knew it would make me feel better putting it all into writing.  

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