Sjogren's Syndrome

Caution: Novella ahead!

Last week I saw my doctor, and received the results of the most thorough blood tests I've ever had. I found this doctor through the American Academy of Environmental Medicine website.

I've suffered with intense allergies most of my life, and always thought they were the key to my problems with exhaustion. My aches and pains I chalked up to wear and tear, all those things that I did in my twenties catching up with me. Headaches? Who doesn't have headaches? Mostly I've self-medicated, or gone to my local GP and the conventional allergist, taken the drugs they offered, let them look at me sceptically and tell me that how I feel is common among women (key: among women). It's tough when your doctor doesn't take you seriously. They acted as if not feeling good was just plain old life as we know it, so deal with it. In all these years the local GP has never scheduled me with a complete physical, and only referred me to a pulmonologist when I became upset enough over my chronic cough that I insisted on a referral, which he wasn't going to give me until he took an x-ray, only to find that there is a mass in my lung. Surprise! 1st lesson: Stick with what you know, and argue with the doctor.

Some years ago I went to a naturepath, and she told me there was a diet component to my problems, that I needed to leave gluten alone. I was under a lot of stress taking care of my mom, and didn't follow her recommendations closely. When I asked the conventional allergist about gluten sensitivities he shrugged it off, and said that 'naturepaths do blood tests that aren't always accurate'. He did a scratch test for food allergies which was negative on all counts, and gave me another inhaler and more prednisone. He never did a blood test for food sensitivities, but I chose to believe him.

So by now I've gained more than 20 pounds from steroids, my breathing hasn't improved that much since this started, and the drugs that the doctor is offering me now raise my cancer risk, which is already genetically high. I still hurt all over, and am exhausted all the time. That's when I hit the internet to learn more. I found the Stop the Thyroid Madness website, which seemed to have some answers for me. On that site I found the link above to the Environmental Medicine site, where I found a doctor within 60 miles of where I live. I filled out a lot of papers, and gave about 3 gallons of blood, and talked to the doctor for an hour or more. A couple of weeks later I was given a prescription for a small amount of testosterone cream, which helped with my muscle soreness and moods. Who'd a thunk it? You'd think that there'd be enough testosterone floating around this male-dominated house to provide for my needs!

So I finally had my follow up visit last week and he went over my labs with me, only to tell me that I have tested positive for Sjogren's Syndrome. That means my eyes are dry, my mouth is dry, and there's a reason beyond allergy medicine for it. Wow. What also goes along with this syndrome is pain. Pain in my joints and muscles... So all this time that the doctors were looking at me like I was an out-of-shape whiner, I had this stinking disease in me, it's just that no one bothered to test for it before because they were busy not taking me seriously. They just wanted to give me anti-depressants. Yeah. It's all in my head... except for these blood tests that prove otherwise.

What else was contained in my blood tests? The fact that I am gluten sensitive. It's listed in the blood tests under 'anti-gliadin Ab AgA and IgG.' When I started researching gluten sensitivities and celiac disease I was floored by the correspondence between my condition and the characteristics of celiac disease. It's a lot more than digestive upsets. Everything from skin conditions to chronic fatigue and crippling muscle and joint aches can be a result. The changes in diet required by avoiding gluten are simply overwhelming in many ways, but there are a lot of successful and far healthier people out there that are sticking with it, and if they can do it, so can I. So here I am embarking on something new and different and 'really hard' according to all the people I know that won't do it themselves, despite their own health problems. I've tested my reaction to wheat, and now I know for a fact that it brings on asthma attacks and intense body aches and joint pain. Can I live without a sandwich if it means not hurting all over? I think so. Will it always be easy and convenient? No. I will have to carry snacks with me wherever I go... which is easy when I think of the alternative of not being able to breathe in and out, or having an asthma attack in a restaurant with my lunch, which I have done in the past. Carrying snacks is better than seeing the fear in my kid's eyes as I cough and choke and fight for air.

I finally have some answers. Now I just need to work with what I know.