Sunday, January 5, 2014

The Good, The Bad and The Ugly (My Diagnosis, My Doctor and Some TMI) A Celiac Story

The average time for the onset of symptoms to the diagnosis of celiac is 6-10 years.  I was "only" seriously ill for 8 1/2 months.  Suddenly, I developed several illnesses.  I was 40, but was worried about early onset Alzheimer's.  I couldn't remember conversations from the day before. I would get in the car and not be able to remember how to drive somewhere that I had driven for years.  It was really scary.  I had zero energy.  It was more like negative 100 energy. My doctor said it was probably chronic fatigue.  I suddenly became asthmatic.  I requested allergy testing and my doc told me to take claratin.  I then demanded allergy testing and found I was seriously allergic to cats (we had two), dust mites and a Russian olive tree.  I had been allergy tested only a few years earlier and wasn't allergic to anything.  I had a chronic cough, unrelated to a cold.  Of course, my doc never even gave me a chest xray.  For 8 months, I coughed all day and night long, often hard enough to throw up.  People looked at me like I had the plague.  This was extra special because from the strain of coughing and throwing up, I developed stress urinary incontinence.  So even with a pad, I would often have to change my clothes.  The doctor said that was just age related (I was 40) She said my cough was Silent GERD and gave me prilosec. (which is a horrible med, don't take it without researching it)  And then, of course there was the diarrhea.  Progressively got so bad that I couldn't leave the house and I had to take time off work.  I was up all night, running to the bathroom.  I stopped leaving the house after a a bowel accident in public. (You have NO idea!)  The doctor diagnosed me with IBS, said there was nothing she could do about it and that I would have to live with it the rest of my life.  So needless to say, I was incredibly depressed.  I went to her in tears multiple times, telling her that I couldn't handle being this sick all the time.

However, I am a total research geek.  I knew that all of these symptoms beginning at the same time was NOT a coincidence.  I knew they were related.  I fired my doctor and started doing what everyone tells you NOT to do.  I googled all of my symptoms.  I spent weeks online trying to figure it all out.  I read that my "Silent GERD" symptoms could actually be an H Pylori infection.  I went into my NEW doctor with a list of tests I wanted: Crohn's Disease, Celiac, H Pylori, certain types of cancers, ANA (autoimmune disorder test), CRP (shows inflammation in your body)  This seems silly, but the one thing that made me ask for a celiac panel was my poop.  I came across a chart that had BM colors and meanings.  All of my poop was yellow & this chart said it could be a symptom of celiac.  Anywho, the tests came back positive for autoimmune, celiac, H Pylori, and very high CRP numbers, which meant I had a systemic inflammation.  I was treated with antibiotics for the H Pylori.

My Celiac was confirmed a few days later by biopsy.  They found a polyp that almost always turns into cancer and that I was young to have.  They also found signs of diverticulitis.  Like I said, I guess in theory, I was lucky it didn't take 10 years to get diagnosed.  I am glad I am persistent and a researcher.  I am really angry at the doctor that ignored all of my symptoms.  I am also really grateful to have figured out what the problem was.  I went GF the day after my endoscopy/colonoscopy (which I now have to get every 5 years due to the polyp)  EVERY single one of my prior symptoms went away after going gluten free.  Every. Single. One.
Talking to people who don't know much about celiac is interesting.  People are generally pretty curious.  Mostly respectful, but a lot of people don't understand the difference between intolerance and celiac, due to lack of information.  They say they have lactose intolerance and found ways to cheat, and I will figure out what I can cheat on.  Celiac doesn't work that way.  If I eat one grain of a gluten containing food that is 1/4 the size of my pinky nail, it causes the autoimmune response.  An autoimmune response means that my body declares war on itself.  My cells think that some of my other cells are the enemy, and set out to destroy and kill them.  People often also (with love) suggest I take a digestive enzyme (Like gluten-ease) so that I can "cheat" and eat gluten.  That is like lactaid for lactose intolerance.   I do not have gluten intolerance.  I do understand gluten intolerance isn't fun and it is it's own thing, it's just not celiac.   Again.....ANY GLUTEN....autoimmune disorder....full scale war within my body.  Yes, and it can cause cancer too. If I mention that to people, I often get the, "Everything causes cancer."  Thanks a-hole.  Why don't you start smoking 2 packs of cigarettes a day and if you get cancer, I will shrug & say, "Everything causes cancer."

I think my family and close friends are figuring it out, since last time I was seriously glutened, I was in the ER for 6 hours and all of my symptoms returned, leaving me down and our for weeks.

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