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Do These Symptoms Sound Familiar To Any Here?

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Posted 17 December 2013 - 03:09 PM

I haven't eaten gluten for 10 years although I was never diagnosed. I simply felt discomfort after every meal in my life and, after two bowel obstruction surgeries I came to this site and realized where my issues likely were at the time. I don't have those symptoms any longer.  That is not why I posted here.


I have a niece who has the following symptoms that I copied from an email from my sister and will paste it here:


"Her symptoms started over a year ago. She currently continues to have high blood pressure although on 3 types of meds. Her white blood count continues to be high. She had a bone marrow test already. She has a red molting/rash of her skin on her upper portion of chest, neck and arms. She has constant pain in the sternum area of her chest. She is completely exhausted on a daily basis.  She occasionally has a good day but we cannot trace it to anything specific although she logs daily her activities, diet etc.  She has bloating in the mid drift area. She has seen over 10 specialists all of which cannot determine a diagnosis. She has seen an oncologist, dermatologist, infectious disease doctor, internist, phelobotomist, and has had every blood test imaginable - all with no results. She saw a kidney specialist and they found a small tumor but said not to be concerned about it.  She has been tested for Lupus and other autoimmune diseases.  So it continues to puzzle everyone.  The cardiologist she saw last week is testing her with an electro-cardiogram but is certain her heart is not the problem.  He said she has chronic pain syndrome which has no cure...just treatment with narcotics. Still nothing definite."


Any of this sound familiar?


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from Chicago suburbs near O'Hare

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Posted 17 December 2013 - 04:56 PM

My honest opinion? Of course it sounds familiar. We see/hear the same story every day on here.

It does not puzzle me, but I lived these symptoms and more for years before I was in full-blown celiac hell.

Saw dozens of "specialists" who had no answers. 


(1) Was she tested for celiac? DH?


(2) If she has been tested for celiac and it was negative, then she may have NCGS.


(3) "chronic pain syndrome which has no cure"  is BS.  Many docs use this as an excuse to stop looking for an answer. They use "fibromyalgia" and "IBS" too many times to dismiss patients. 


Has she tried a gluten-free diet? It may solve her problems. 



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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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Posted 06 January 2014 - 08:31 PM

I  also have undiagnosed HBP. never before in my life before about six months ago.

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