I'm Amy. I just want to tell my story here as an introduction to who I am and possibly to get some feedback from others who have gone through similar issues. I'll start from the beginning. I am a female, 27, 5'1, mostly Irish descent, living in Upstate NY. My grandfather (without Irish ancestry), mother and 3 out of 6 siblings are officially diagnosed with Celiac Disease (the other 3 have not been tested, though all have some of the less striking symptoms). I took the test last year (though not the best one) and it came back negative, but did not have the biopsy (money issue). Three days ago, I decided to go on the gluten free diet because I am sick of being sick and everything points to Celiac. Out of money issues and just fear of invasive procedures, I do not wish to, nor do I think I need, a diagnosis, to change my lifestyle, and there is no guarantee I would get one even if I do have Celiac. Although the money issue is going to be interesting in buying gluten free products.
My health history goes a little like this:
toddler-allergy to corn recognized, which I subsequently do not have (or at least not as strong or not manifested the same way)
late childhood-late teens--extreme constipation and bloating (I went years barely going once a week), which has changed to moderate
12-allergy to red #40 recognized---neurological and digestive reaction
13-20-debilitating PMS, still a bit of an issue, large breasts somewhat the cause of cysts.
14-diagnosed with Hypoglycemia, Lymes Disease (though never had the ring) and osteoarthritis in the cervical vertebrae (caused or exacerbated by a fall down the stairs...though, osteoarthritis at 14?)
15-diagnosed with Fibromyalgia, hit a major depression which went undiagnosed. Put on 10 mg amitryptyline to help me sleep.
16-extreme neurological reaction to MMR vaccine---numbness and tingling for a few weeks (I since avoid vaccines)
16-current today--chronic sinusitis
20-diagnosed with Myofascial Pain Syndrome, changed to notryptyline, allergy to peanuts diagnosed.
21-diagnosed with Obsessive Compusive Disorder (had symptoms from 5 years of age), put on Celexa, along with nortryptyline
24-diagnosed with Major Depressive Episode and Post-Traumatic Stress Disorder (lots of life changes and losses happening at the time), changed to Zoloft and Anafranil and went off nortryptyline
routine medical tests through the years have also randomly revealed anemia, low blood sugar, low blood pressure, tachycardia, slightly high white blood count, etc.
I recently decided, after reviewing my medical history, especially the one connected to the psychiatric system, and because of the relative stability of my life right now, to go off of psychiatric drugs. Going off of Zoloft was very succesful. Ananfranil has been harder, as far as withdrawal, even going off over a period of months, but I started noticing the most astounding thing...how I feel physically when I eat certain foods. Psych. drugs can really make you zoned out to how you feel on an emotional and physical level. Reading the literature, I wonder if these drugs I have been on for so long have gluten as a binder. Anyway, I realized I feel the best after just having fruit (love fruit), most veggies and rice, and more bloated and irritable after breads, and even dairy and soy. I used to gorge on dessert items in an effort, I believe, to get a sugar high from lack of nutrition, but am realizing when I am full I do not crave them.
Beyond the absence of diarhea, the profile looks pretty typical for someone who is uncovering Celiac later in life. (I haven't mentioned other things that might contribute, like not having been breastfed, birth canal trauma, being the child of older parents, etc.) I truly believe I am starving, and have been for some years. Thank God my siblings took the bull by the horns and got diagnosed.
Getting diagnosed is not a priority for me right now. I know there is that whole controversy about needing the diagnosis, but, honestly, after only 3 days on the diet, I feel better (if only that I don't have as much bloating and irritability after meals), so I don't ever plan to go back, esp. if I notice more improvements in the long term. The medical community has failed me and I am ready to do this on my own, with their consultation (vs. their direction). I am looking in the area for a good nutritionist. I still need to find what foods I am sensitive to, beyond glutenous ones. I also know I will need vitamin and mineral supplements, at least initally. I have never been one to cook much so this transition will be very hard, though I suppose anything is better than starving! I have over the past few years become somewhat of a vegetarian, only eating white meat occassionally, b/c of the cost of non-GMO meat. I am very politically radical and eat mostly organic. I do believe I will have to add chicken and turkey back into my diet (I especially love turkey!) and possibly take most dairy and soy out. Will need to find a recipe for a good vegan pizza w/o soy cheese! For right now soy and dairy are still in.
Anyway, that's the long and short of it. I hope that this community is open minded to folks who have been daignosed with mental health disorders. It is an inescapable part of my struggle, I believe, with gluten. It also is part of my history as an adult survivor of childhood emotional and physical abuse...at the hands of my mother who, although diagnosed as Celiac, was not on a completely gluten free diet---unbeknownst to her). I choose not to think of myself as having a mental illness (as these are clusters of thoughts and behaviors rich people put a label on), so I am not looking for medical help with any of that, but I do associate as a trauma survivor, with all of the emotional and physical issues that go along with it. My time on medication and in some therapists offices has stalled my healing process, but I believe, so has my time starving my body of nutrients.
As I said before, I was just looking to say hi, and put myself out there. If you have any thoughts or tips, (I can use all of the help I can get as I embark on this journey) feel free to respond. Know that I won't entertain a discussion or advice on letting big pharma back into my life. I will similarly respect everyone's wishes on here. In my day job, I am a community organizer and advocate, and have a strong spiritual belief in the importance of put lucks and non-violence.
More than anything, I need a cheap, fast way to be gluten free and healthy (don't we all?)
In solidarity and no longer a victim of Big Pharma and Big Agriculture,