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Help Please! Test Results From 2006

diagnosis celiac help frustrated

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#1 rileybennett

 
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Posted 29 November 2012 - 01:59 AM

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.
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#2 kareng

 
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Posted 29 November 2012 - 06:00 AM


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)."

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#3 guest134

 
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Posted 29 November 2012 - 06:31 AM

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?
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#4 nvsmom

 
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Posted 29 November 2012 - 07:29 AM

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.
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#5 guest134

 
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Posted 29 November 2012 - 07:48 AM

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.
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#6 nvsmom

 
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Posted 29 November 2012 - 08:26 AM

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. ;)
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#7 guest134

 
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Posted 29 November 2012 - 11:31 AM

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?
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