Wednesday, June 4, 2014

Midweek Update - Yet another change of plans

My husband and I are both very frustrated.  I've done nothing but get worse over the last approximately four weeks.  If food is a really big factor for me, why am I not significantly improving now that I have not eaten anything off the diet for four days?

On 04/28/14 I listed my symptoms before starting my low histamine experiment:
For as long as I can remember I have had eczema on my hands.  The itchiness and pain would be so severe that I would sleep with ice bags on my hands so that they would be numb enough that I could sleep. Topical steroids would help for a time but I would end with a worse flare up.  Eventually I found a hand cream that helped and faithfully put a thick layer of that on every night and covered my hands with socks or gloves.  At bad times I'd put more lotion on more frequently.  I also found that red dyes and benzoates (a common food preservative) would make the eczema much worse so I avoid them.

I have been smell sensitive for as long as I can remember - natural and artificial scents make me ill ranging from headache to rash, joint pain, asthma attacks and nearly passing out.

I have had fibromyalgia for as long as I can remember.  Medications do not help and severity comes and goes but is always present.

When I turned ten, I started having asthma attacks.  This led to allergy testing.  I reacted extremely strongly to the histamine control and then either tested positive for every single test or negative for every single one.  Inconsistent results meant that I couldn't do allergy shots and was determined to not have allergies.  My asthma comes and goes and I have excellent lung capacity for an asthmatic.  I'll be attack free several years and then suddenly have to go on numerous drugs to get things under control.  Eventually I discontinue all but one drug (Singular) and have no asthma attacks.

By the time I was 12, I had severe sinus headaches and completely lost my sense of smell.  At 13 I had my first sinus surgery to remove nasal polyps and another when I was 14 to finish the first surgery.  My sense of smell did not return.  I immediately begin to make polyps post surgery.  I had the next surgery when I was 20 and the fourth when I was 30.  I then started a medicated nasal wash and now my sinuses look "great" and I can generally smell.  My sinuses feel awful.  I have continuous headaches, pressure and post nasal drip.

Eleven years of chronic fatigue started when I was 20 and lasted until I was 31.  The fatigue was so severe at times that I had to drop out of school for a semester or take a medical leave of absence from work.  In between the very bad times, I would still be continuously exhausted.  Physical exertion of any type would cause me to feel as if I was dying and I would have a very hard time getting out of bed for as many as three days afterward.  Medications did not help and my blood work was normal.  I eventually determined that I could not share laundry facilities or use fabric softener.  I discontinued that and my chronic fatigue was 100% gone immediately.  I do experience unusual fatigue during "body freak out" episodes.

When I was 29 I started having significant memory issues.  While documented, no cause has been found.

When I was 31, I started having regular bouts of acid reflux/heartburn lasting as long as eight months at a time.  When I was 33, I started having bouts of nausea lasting as long at six months at a time.  Diarrhea and constipation come and go.

I am occasionally dermatographic.  I periodically have hives lasting as long as six months.

I am generally an itchy person.

My eye lids randomly swell and turn red.

I have been sun sensitive most of my adult life, burning in as little as five minutes of sun exposure.  I can even burn outside of the hours of 10 am to 2 pm.

I am fairly ill for approximately one half of my menstrual cycle each month.  Birth control pills make it worse.
Except for the eczema on my hands, nothing is different.  My illness is moving from chronic to acute again. 

At this point, my husband and I are ready to concede that the low histamine diet is not working.  It is taking a ton of energy for me to maintain it and my energy is again in limited supply.  I'd rather spend that energy on my kids than on food preparation.

If nothing else the low histamine experiment has seemed to indicate that I am currently gluten intolerant.  I ate barley last night and have had heartburn and worsening eczema since that time.  This means that I have more than a wheat issue currently.  It is time to go truly gluten free.  Maybe the rash, heartburn and nausea will go away on a completely gluten free diet and I can cross those things of my symptoms list.

A low salicylate diet is a future possibility but not before this weekend.  My husband and I will talk about it and figure out the new plan.