My Journey to a DIagnosis
At another forum on which I participate, someone asked me how I knew I was gluten-intolerant. I used that as an opportunity to tell my story publicly for the first time. I thought some of you here might like to know, too. Below is a copy/paste of that post. Thanks!
Thank you! Since writing the above, I have been medically diagnosed for genetic celiac sprue. My self-diagnosis has been confirmed.
For me, getting this confirmation was an extremely difficult process. My journey to a truly accurate diagnosis was emotionally excruciating! (Sorry about the dramatic overstatement, but it really was!)
I've never really told the whole story to anyone before, so no one really knows what I went through - with the exception of my family members who were witnesses to my journey. I hope you don't mind the small encyclopedia below. I'm just using this as an opportunity to get it all down somewhere.
I wasn't really clued in by the GI tract symptoms. (gas, bloating, belching, etc.) I just thought that was "normal." As oblivious as I was to this, I was still aware that I had major, multiple, lifelong food allergies. The weird thing is, the foods to which I was allergic seemed to change, come and go, with the exception of wheat - which always seemed to be a problem for me. (VERY common for celiacs to have multiple food allergies.)
What my FAMILY was most upset by were my behavioral/emotional/neurological symptoms. They were disrupting not only my life, but theirs! Both my immediate and my extended family were CONSTANTLY telling me that I was mentally ill. (Imagine how fun that was!) I was inconsistent, unpredictable, unreliable, had NO memory, NEVER slept, had severe mood swings, was deeply depressed, my behavior was wildly erratic, I would emotionally retreat, couldn't relate/connect with myself or others, etc. They were determined that I have a diagnosis of mental illness. So, they continually sent me back to the doctor's office in search of a diagnosis.24 months ago
But, when I would speak to the doctor and go through the list of symptoms for mental illness and/or Alzheimer's/dementia, etc (not oriented to time/date or location, unable to separate fantasy from reality, auditory or visual hallucinations, gaps of time for which I couldn't give account, unable to recognize familiar objects or people, etc) I had NONE of the symptoms! NONE! The doctor would tell my family I was NOT mentally ill and he didn't know what the problem was, and my family would tell him something was definitely wrong and to please treat me for mental illness anyway! (YIKES!) He would then experiment with various drugs to see if they would be effective, and within 24 hours of being on an anti-psychotic, I would become very psychotic, and he would have to take me off of them! (Yes, anti-psychotics cause psychosis if you DON'T need them.)
The next thing that happened was my miracle. I picked up a book about diet/nutrition, that specifically dealt with treating emotional symptoms. The first thing it said to do was remove gluten from the diet entirely. This gluten challenge was my eye-opener. My symptoms greatly improved (but didn't vanish completely.) Only when I was accidentally exposed to gluten did they return to their previous severity.
After one episode, to which I was exposed to gluten and had a psychotic breakdown, my son was so deeply upset by the event that he basically threatened me. Your diet alone isn't good enough. You need to not be like this, ever! Go back to the doctor and be put on medication that makes you not act like this or I will find another place to live. (Well, he's right!! This is NOT how a mother should act! EVER!)
So, back to the doctor I went, but this time armed with more information. I told him what was going on, what made it better, what made it worse, but then I added that I HAD TO BE GLUTEN FREE completely! He says, NOW YOU TELL ME! (LOL!) He said, if you have had celiac disease this whole time, your GI tract is severely damaged by now. You are unable convert your food into the key nutrients you need. One of the conversions I wasn't making was turning the folate in my food into the methylfolate that my blood, brain and body needed. So, he gave me a Rx for methylfolate. He said, you should start feeling better right away, and slowly get better and better as time goes on. (given that I stayed on my Gfree diet.)
Turns out, methylfolate is the backbone for many neurotransmitters - Dopamine, Serotonin, Nor-epinephrine, etc. I had no neurotransmitters in my brain!! No wonder my behavior was so erratic! Suddenly, I was able to sleep, focus/concentrate, connect with myself and others, etc. I could remember conversations and events. I felt light, happy, refreshed, content, peaceful. It was totally amazing! I was a brand new person!
It continually amazes me how this one little change has made such a gigantic difference in my life. I have truly enjoyed telling my story. Thank you for the opportunity!!
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