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Alika Nash

Recently Diagnosed With Celiacs After Years Of Ongoing Misdiagnosed Health Conditions

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I am new to the forum, and new to learning about celiacs disease. Despite the fact that I have had tons of symptoms throughout my entire life and in the past 4 years had literally become disabled. I am 38 years old now, but as a child had a lactose intolerance, chronic diarrhea, nose bleeds (by which my mother used bath towels to soak up), joint pain and a huge appetite all the time, I was also very moody and emotional as a child. I remember going to the doctors for symptoms but it was always for one or the other, nothing was ever really found and some symptoms diminished as I grew older. A bit older I noticed muscle tears happened quite easy along with easily bruising, the diarrhea has always been apart of my life and I just got used to it being that way. I started experiencing a lot of abdominal pain, that always felt like an intensified menstual cycle, but went on for days sometimes months without ever finding any relief from over the counter meds nor answers from doctors. with various tests or treatments. All the while every year of my life something else would surface, in the form of a symptom or problem. In 2007 I started experiencing extreme joint pain in my legs, and pain in my feet while exercising or at rest, so bad that I could barely walk. The joint pain in my kness became so bad that I saw an Orthopaedic surgeon and found that I required surgery on my right knee as there was an obvious fracture to my femur and a tremendous amount of cartilage damage. So I followed through with the procedure and was expected to recover in 1 month...it never happened. Four months into that, I saw another surgeon who said the fracture was now a large hole, and showed moderate progression of deteroration. I foolowed care with this surgeon which led to injections and braces for a year before I wound up needing entire knee replacement as the degeneration just got worse. I had all sorts of other various symptoms surface in that same year. I experienced bone pain and muscle pain throughout my entire body, tendon damage, muscle loss, nerve damage in my neck and arms, balance issues, along with dizzyness, blurred vision, numbness in hands and feet, sweats, hair loss, my list goes on and on. I have severe pitted edema in my lower extremities. I have severe bloating of the abdomen with pain that is constant, and just recently had an inginual hernia, that presented itself like a hernia but was masses of saponified and necrotic tissue. I have spent the entire past four years at the mercy of conventional medicine and doctors, only to labeled an enigma. As I lay here feeling like there is no hope, and that my life will probably be short at this point.

A friend told me about a neighbor of hers that had just been diagnosed with celiacs, which led me to research it and persue a local non-profit health clinic providing holistic health. Upon visiting them we spent 2 1/2 hours discussing my entire health history, they physically examined me and within 3 hours I was on a path of hope! We discussed without testing they strongly believed everything I spoke of through the course of my life led to the possibility of celiacs disease. I then scheduled with them a complete celiac panel test and an live blood cell analysis. After 3 visits I have found more out about my life and my health then I have in my whole 38 years with conventional medicine and doctors.

I have been diagnosed with celiacs, and various other possible conditons which may or may not have caused damamge to vital organs. I am in the process of recovery, quite frankily only 5 days in. I have a long road ahead of me and still may require surgeries for varios things, but my ultimate goal is to gain my life back. I hope to make some celiac friends and learn all I can about this debilitating disease and hopefully save a few from the severity of my physical health.

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Oh, you poor dear, you have suffered so much for one so young :huh: What an incredible story you tell of the downward spiral from failure to diagnose. You have had practically every symptom in the book (and some I don't think are even in "the book"), and you finally found your saviours, people who would treat you as a whole person rather than a symptom here and a symptom there. What you must have suffered over the years! But now you are on the path to recovery and being whole again Yes, I am afraid for you the road will probably be long, but every corner you reach the road gets shorter, until one day you will round the bend and there is the finish line - the freedom from pain, and healthy living. Do let us know what we can do to help you.

Sending you virtuual {{{{{{hugs}}}}} and strength and hope for your journey. :)


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson


Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Thank you both for reading. This is already proving to be tough, but my will is stronger.

I am quite relieved regardless to finally give a name to my condition after all these years, and not to sound mean, but to know I am not alone.

I think this will be a nice place to learn, and press on when times are tough knowing so many others suffer as well. I am looking forward to using this forum through my recovery. Thank you.

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