Monday, July 11, 2011

Solving the mystery (illness)

It's been a really long time since I've talked about my previously named "mystery illness." I've never given a full account of that time in my life. It was hard to talk about for a long time. I realized this month that I can do it now, with ease. Because I have some answers now and it's time to share my story.

If you haven't been reading here long, you've no idea what I'm talking about but if you're a seasoned veteran you may have read about my health issues here and here and here.

In February 2009 I started to have a strange pain in my right side that wouldn't go away. About two days later, I was hit with pretty extreme fatigue, pain in my shoulder that extended into my chest. A few days following that, I started getting severe aching in both of my thighs and calves down into my feet. Within a few days, I started having tingling in my left heel and arch of my foot. Eventually it extended into my toes. My arms started aching. My tongue felt like sandpaper. I started having tingling in my lips and chin. My sinuses became very congested. I had trouble focusing my eyes when reading and seeing long distances. My periods became very erratic. My head started tingling. I even had pain in the cartilage of my ears. My face burned most of the time as though I was really overheated. I had severe digestive issues.

Obviously, I went to see my doctor. Several times.

My doctor took blood twice. I had two internal exams and an ultrasound. I had an MRI that only showed some mild sinusitis. Eventually I gave up on my doctor. She couldn't figure out what was wrong with me and she didn't seem interested in finding an answer.

I started suffering from fairly severe anxiety. I couldn't sleep well. My legs moved constantly in my sleep. My muscles were twitching every time I lay down. I assumed it was from the mystery illness. Only later did I realize it was from anxiety.

I cried a lot.

I thought I was dying.

Finally, after about 2 months of this and no answers, I went to see a naturopath. She put me on all kinds of herbal supplements, made me cut out sugar, red meat, caffeine, alcohol and gluten. She said that I could be suffering from a virus, from a reaction to something I'm eating or an issue with my liver or adrenal glands. She was quite certain that it wasn't a serious ailment.

After three weeks on the supplements and eating very strictly, I felt like a new person. I had my old energy back, my digestive system was back in order, many (although not all) of my symptoms had disappeared. My birthday was just a day away and I celebrated with as many cupcakes as I wanted to eat.

Within an hour I was extremely fatigued again. Within a day my other symptoms began to return. I presumed I had Celiac Disease and went to see a GI who told me to take an over-the-counter Celiac test. First I had to go back to eating gluten for at least two month. I did so. I felt very bad.

But the test came back negative.

Again, I was lost with no answer. We were in Waterloo by this time for John's sabbatical year. I started to eat what I wanted. I started seeing a chiropractor weekly, sometimes twice a week, for the constant pain and tingling. I again felt as though I had no answers but I knew they were within reach if I just found the right person to help me. The naturopath had obviously hit on something that was leading in the right direction, I just didn't know what it was.

In September of 2009 I found out I was pregnant with Henry. I continued seeing the chiropractor every week and sometimes more often until he was born. It was very expensive and it kept me feeling okay but I knew if I didn't see her regularly, I would suffer.

We moved back to Ottawa and I saw a new chiropractor here who is also a nutritionist. He looks at the whole picture. He told me to get off gluten right away (and sugar and caffeine). I did. It helped again. I started feeling a lot better. My adjustments started holding.

I found out that the pharmacy Celiac tests are notoriously inaccurate.

However, rather than retesting and having to go back on gluten, I've stayed off. I've been strictly off of gluten since January 2011. I still get dizziness and fatigue and I've realized that I'm often iron-deficient (information passed onto me by the GI I saw), a common problem for people who have Celiac Disease. Iron isn't absorbed well by the damaged gut lining. When I remember to take my supplements, I feel extra-good.

Eliminating gluten has been a big learning curve for me but I've got a really good handle on it now. I've found some great recipes and strategies that work well for me. I'm going to share some of them here over the next while. I don't know if I'm Celiac but I suspect I am.

My gut issues were not new when they flared up in February 2009. I've had gut issues since I was about 6 years old. They got extremely severe in my last year of university - I would routinely be found laying on my bed sobbing, moaning and not able to stand. That lasted about 5 months and then it magically cleared up although I still couldn't tolerate proteins well afterward. I realize now how all of this is connected. And it all seems to be connected to gluten.

When I accidentally have gluten now, I react fairly quickly and severely. I know that this is the root of my problems although I still have days when I don't feel quite right and I question whether I've hit the final answer. Most days, I'm 100% sure. Because I feel like I've made a 180 degree turn from February 2009 and I don't ever want to go back there again.


Julie said...

so happy that you are finally feeling like the old you again.

and i'll need that chcolate cake recipe for my birthday cake!

(word verification: lataxly. which makes me think of exlax. which makes me think of our opposing gut issues. heehee)

little b said...

I am so glad you figured it out. I suppose you don't need to know definitively if it's Celiac or not, since you know gluten is the (major) problem. I'm just glad you're not dying. ;)

Shan said...

I'm glad you got it figured out!