• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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.

Help Please! Test Results From 2006
0

7 posts in this topic

Hi everyone,

This is my first post on the site. Really looking for some help/answers.

I have been sick for most of my life. As a child, it started with pneumonia and constantly being sick. As I grew older it progressed, I was first diagnosed with Mono... which never went away. That led to me being diagnosed as a sufferer of Chronic Ebstein Barr, with unspecified immune deficiency and this wacky gene associated with XLP in males. I was sent to a fancy doctor at the Cincinatti Children's Hospital who looked at me and said there was nothing he could do.

My life has been miserable, I am in constant pain. Flu like pain, aches and pains, lower abdominal pain on my left side I always assumed was my spleen flaring up.

I did ok for a couple years. Just ok.. struggling my way through undergrad at IU. But this last semester, things have exploded. In constant almost excruciating pain. No one would help, so I requested all of my medical files and went through them with my mother, hoping there was something someone was missing.

There apparently was... In 2006 two separate Dr's tested me for celiac, and I tested positive both times. I was so mad, I had never even heard of this disease. So I started to look into it. A lot of things matched, a lot of things didn't. I don't have constant diarrhea, but do have constipation. I am not underweight. I won't go into the whole spiel but let me just tell you a lot of things made sense, and a lot didn't.

I got a new doctor, I couldn't believe anyone had let this slide by. I went to her yesterday, she is only willing to tell me it's a slight possibility, she says there are a lot of false positives. She is sending me to an allergist for a full workup.

Let me be really clear-- I do NOT want to have celiac disease. I have done a lot of research and I can relate to the suffering you all go through. I am not "hoping" for this diagnosis by any means. I just want an answer. I just want to NOT be miserable like this for the rest of my life.

What I am looking for from anyone who is kind enough to answer... how common are false positives? What should I expect from this allergist? I don't want to be blown off again by another doctor who doesn't care. I am tired of my quality of life, and all I need is some help.

Thanks so much in advance, and happy holidays.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Something to show your doctor as they are more likely to believe other doctors.

Http://www.cureceliacdisease.org/archives/faq/in-blood-tests-are-false-positives-less-common-than-false-negatives

"In blood tests, are false positives less common than false negatives?

Even though blood tests are quite accurate, they are falsely positive 1-3% of the time (i.e., being positive without the person having celiac) and, although less commonly, falsely negative 1-2% of the time (i.e., being normal when a person actually has celiac)."

0

Share this post


Link to post
Share on other sites

False positives are more common than false negatives but that is dependant on many things. The EBV virus has been proven to increase Tissue Transglutaminase antibodies separate of celiac, did you have those tests around the time of the virus? EBV has also been known to cause nasty after effect symptoms that can last even years after the virus and antibodies have gone down. Celiac is a mess to diagnose unless you are obviously getting sick after eating gluten.

Can you post your exact tests, the results, and the normal range?

0

Share this post


Link to post
Share on other sites

Ah, geez. :angry: I understand your frustration at your doctors, my doctors did the same thing to me with my Hashimotos... It's hard knowing you could have felt better years earlier.

EBV, from what I know (and I am not medically trained) can often kick off autoimmune disorders in people prone to developing them. I personally became quite ill from an AI disease about a year after having mono. Nasty virus.

If you have your labs, please post the details. Some tests are more specific to celiac than others so people might be able to advise you better if you shared your results.

I would get further testing done too, although I don't know why your doctor sent you to an allergist since celiac disease is NOT an allergy... he could have just ordered the blood tests himself. Anyway, celiac is diagnosed by upper intestinal biopsy and/or blood tests. The blood tests most commonly done are:

ttg IgA

total serum IgA

ttg IgG

EMA

DGP IgG and DGP IgA

There are others but I can't remember them at the moment. You must be eating gluten for a month or so prior to testing for the tests to be valid.

Celiacs are often low in some nutrients too, so you could look into getting your D, B12, Calcium, ferritin and potassium levels checked.

Good luck and best wishes getting it sorted out. Hope you are well soon.

0

Share this post


Link to post
Share on other sites

Ah, geez. :angry: I understand your frustration at your doctors, my doctors did the same thing to me with my Hashimotos... It's hard knowing you could have felt better years earlier.

Why was it so hard to find hashimotos? It is 5 simple blood tests and you either have it or you don't, unlike celiac it is very easy to diagnose.

0

Share this post


Link to post
Share on other sites
Ads by Google:


Why was it so hard to find hashimotos? It is 5 simple blood tests and you either have it or you don't, unlike celiac it is very easy to diagnose.

My doctor repeatedly called my TSH of 4-7 normal and I wasn't educated about subclinical Hypothyroidism TSH ranges then...or the fact that I should have requested the actual results instead of the doctor just saying' It's normal". Because my TSH was "normal" not other tests were ever ordered.

it was the 90's and I hadn't discovered Dr Google yet. ;)

0

Share this post


Link to post
Share on other sites

My doctor repeatedly called my TSH of 4-7 normal and I wasn't educated about subclinical Hypothyroidism TSH ranges then...or the fact that I should have requested the actual results instead of the doctor just saying' It's normal". Because my TSH was "normal" not other tests were ever ordered.

it was the 90's and I hadn't discovered Dr Google yet. ;)

That sucks, sorry to hear about all of your negative experiences. I too had some issues when we were questioning my thyroid, I had to go on the internet and come back with the right tests to get accurate results, luckily I am fine in that regard. Just out of interest, would you mind sharing your TPO, thyroglobulin and Free T levels upon diagnosis?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,425
    • Total Posts
      930,489
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • That's great, Gertrude! I'm glad your doctors sound more competent than mine. And that you're starting to feel better.  I haven't had any abdominal or joint pain in the last few days, and I feel like I have more energy for sure. I've been feeling a little off/dizzy but that might be from gluten withdrawal.  Good luck with everything! 
    • By the way, I got my biopsy pathology report and the doctor took 2 biopsies, not the recommended 4-6. It says no "significant villous blunting not seen." I don't know if I should laugh or cry---so frustrating.   
    •   Thank you, this does feel helpful and reassuring. Did you end up getting blood tests again after going gluten-free? Do you have to worry about cross contamination as much as with a celiac diagnosis?  How do you explain it to friends and family? Non-Celiac gluten sensitivity sounds so vague and I know it's dumb, but I worry about people not taking me seriously.        
    • Helen, a woman with severe lifelong eczema/dermatitis, wrote to me a few weeks ago, saying "I have taken your advice and been strictly gluten free for five months now. The eczema inflammation is 99% gone and my skin quality has significantly improved. I do still get a bit itchy around my neck area and elbow creases, more so at night when it is warm. I have noticed a significant improvement in my asthma also. I still use antihistamines perhaps once or twice a week for runny nose. Does this mean I will need to be gluten free for life? Which of your books would you say would be the most relevant for someone in my position? Thank you for your assistance, regards, Helen. View the full article
    • Hello and welcome Reading your post it looks like each of your results were within the 'normal' range. There doesn't appear to be mention of a total serum IGA to make sure you have enough of this to begin with to make the test accurate however - but there are others here who are more experienced who may be able to tell you more. There are some other celiac tests: tTG IgA and tTG IgG -DGP IgA and DGP IgG -EMA IgA  -total serum IgA and IgG (control test to ensure tests are not false negatives)   They may not be covered by your provider however. Note that you appear to have been avoiding gluten somewhat already, that could impact on the tests accuracy. Your symptoms sound like they could be gluten related (but then practically everything could!) but you may want to discuss with your doctor whether to push for further testing or move to trial gluten free diet. Some people, like myself, test negative but still find symptoms respond to gluten free.   Best of luck!
  • Upcoming Events