My name is Amy and I’m 35. I have a boyfriend named Ryan and my two kids, a girl who’s 10 and a boy who’s 6.
I have two autoimmune diseases that the doctors have struggled to control since my early twenties. I have Lupus (and the Lupus-caused kidney disease, Lupus Nephritis) and a very rare one called Behcet’s (it has affected my brain, so it’s now considered Neuro-Behcet’s. I have severe gastrointestinal problems from the Behcet’s. Lupus is fairly well known, albeit not intricately, but at least most have heard of it. Behcet’s is something that at the doctors have to look up when I’m in the hospital because of complications from it. It’s a really strange one and took over a decade for the docs to figure out with me. I was thought to have MS, Parkinson’s, hypochondria, depression, and a host of others that took forever for the docs to realize weren’t the issue. (I do also have Chronic Mono, Lyme Disease, and Dopa-Responsive Dystonia, which complicated the weeding-out process. The Dystonia is due to brain damage from Behcet’s that causes me to not make enough dopamine) I also have OCD and PTSD.
I started long term chemo and immune suppression but my body has yet to go into remission. I’ve had numerous strokes, surgeries, and infections.
My body attacks both itself and my child when I’m pregnant. I’ve had a number of miscarriages and both my children were delivered prematurely (daughter was 5 weeks, son was almost 9 weeks early) to save our lives. My son has had symptoms of Autism since birth and was officially diagnosed at 14 months and 2 years. His brain didn’t get to form correctly because of the damage my body was doing to him plus the prematurity of birth. He now struggles with Autism and ADHD and is in a special class of 4 children and has an aide with him from bus pickup until home.
My daughter had colic as an infant and has always had a hard time with sensory issues and has, since age two, had joint pain and occasional swelling. She also has stomach pain and headaches fairly often. She was given the juvenile arthritis workup and came back fine. We still aren’t sure what is causing this for her.
My boyfriend has gout and hypothyroidism. He’s had difficulties with depression and has PTSD from two tours in Iraq.
By the accounts I’ve heard and studies I’ve read, we all have something to potentially gain from a gluten-free diet. So, this month starts our journey to testing it out. We’re trying it for at least a month to see if we notice any effects.
I am a vegetarian since childhood (my kids aren’t) and my son has a lot of food aversions that are common with Autism. My boyfriend is the pickiest adult eater I’ve ever known, so this will be a dance of figuring out meals and making sure everyone’s diet is nutritionally sound and nobody hates their food (at least not more than normal… lol).
So, begins our journey! I hope you’ll follow along and we can maybe help you decide if it’s worth a try. I figure if it helps just one of us, it’s the right move!