MCTD Symptom Relief
Diagnosis does not mean there is a cure
Despite my diagnosis of MCTD, and some improvement to my symptoms while on hydroxychloroquine, my throat continued to be the bane of my existence. Almost certainly it will end up being diagnosed as dismotility of the esophagus, as this is common for people with MCTD, and possibly Sjrogrens syndrome causing an extremely dry throat, but it will still be another year before I get to see a doctor to test and confirm this. I never get my hopes up that a doctor will provide answers for me. They seldom do. But in this case I understand that there is more happening here. I have learned, and this learning was at the expense of hundreds of nights sleeping sitting up, spending every day fighting to breathe and on the verge of panic. I did end up finding something that helped me...and I never would have guessed on my own.
Good advice that you just didn't take
I was approached by a few people to try something. I was told to stop eating gluten. Before I continue, you must understand, as a person with a chronic pain illness every last person that I speak to has advice for me. Everyone knows a person that had exactly what I have (not true), and they cured themselves by going to acupuncture, or seeing a chiropractor, or a naturopath, or an iridologist, reflexologist, sports physiotherapist, occupational therapist, a masseuse, an eastern medicine doctor, alternative medicine doctors, holistic healers, rub some peppermint oil in your eyes...honestly it is one of the very worst parts of this whole thing. I am not comfortable speaking with everyone about my condition, especially all of the time, but most importantly I am not what you would call a spiritual person. I do not share ideals about unseen benevolent forces or healing mysticism and I am not always great at being tactful when cornered by someone who wants to pray for me, or have me take part in any unlicensed medical experiments or unproven therapies. (This is why I wrote this funny article about things you should never say to someone with MCTD)
Sorry, I am allergic to snake oil
I hate when people tell me about their magic cure even though they barely know me, know none of my symptoms, are not a doctor, do not understand autoimmune diseases, or have ever even heard of mixed connective tissue disease before. The worst part is because these people are all simply trying to help so I feel bad for getting frustrated with them. They see a person at the end of their rope who is trying everything they can do get better, without success. There is a basic human need to want to help a person like this. Offer some advice, or a glimmer of hope to try this other thing that you might not have tried yet. In a way it is good, obviously, but when it consumes every conversation that you have throughout the day it drives you crazy after a while.
Ask before offering helpful advice
If you ask how I am doing I can say fine, like everyone else does, regardless of how bad I feel. But if I care enough about you, and my relationship to you, to respect you by telling you the honest truth of how things are going, please do not interpret this as an open invitation to have my ions aligned by a healer that your friend knows, no offense. I completely understand the desire to want to help. I even encourage the kind sentiment...but I would appreciate having "an out". Before you delve into your miraculous story of recovery, and ultimately your referral, just ask if I am looking for advice. Give me a chance to say no when I am just not in the mood for it.
You will listen when the time is right
So now, what was that about gluten? With going "gluten free" being such a hot button phrase these days, and being irrevocably tied to pretentious people ordering gluten free because it is trendy to do that, I did not meet the initial conversations about wheat and gluten with open ears. Also, I mean, who wants to give up everything that is delicious right? Not me! But as the weeks blended to months, and the months now to years, the stark lack of improvement from all of these doctor and specialist visits was eroding my resistance to hearing what ultimately was good advice. Stop eating gluten. Enough people told me, none of whom were my doctors by the way, that they also had trouble with gluten and if I was out of ideas to try it. I finally did. It was not what I was expecting in the slightest.
The next section is on gluten and MCTD
About the author - Steve Goodale is a blogger and technical specialist from Ontario Canada, winner of the 2018 Industry Leadership Award, who reaches over three million readers per year with his popular pool and spa blog. Steve started the www.CookForMeBaby.com blog about healthy eating after being diagnosed with a rare and incurable autoimmune disease. You can read more on his story about life with MCTD here. For more healthy cooking inspiration check out his other delicious recipes.