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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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127 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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    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
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