Lovermoon, what a troubling story, but welcome to the forums! There are many people on here who care, including myself, and would like to help you.
First off, take a few deep breaths, and tell yourself that you will come out okay through this. Start today, with whats on your plate, and try not to worry about
any of the build up that you feel like needs addressing, you will get there.
It sounds like you have had these issues for quite some time, and they've lined up some past history for you. Gluten intolerance, unlike celiac, is something that can't readily be tested on an ordinary blood test. But there are complete stool tests out there. I personally have found out what I am tackling by taking the GI Effects Complete Profile Stool test, through Metametrix Clinical Labs. www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects
Despite what anyone says, the facts are out there, that alot of diseases (not all) are connected to the gut in many different ways, and in your case, you have already had a few painful episodes that prove your gut is connected in this.
Before looking into the test, I would really recommend you do a search on Naturopathic.org, and find a Functional Medicine Doctor that is a an MD (just like all of the doctors you are seeing), but is also
open to natural, alternative, homeopathic and functional medicine treatments. Functional Medicine gets to the root of your problem, instead of consistently dousing you with pain medications and driving excuses into your head like "its just the way your body is" or "your doing this to yourself". Here is the link to search for a Naturopathic doctor in your area: www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects
Don't listen to what anyone has to say, medical doctors prescribe medication that never TREATS the issue, but just masks it for the time being. What you want, after all of these years is a doctor who will sit down with you longer than 15 minutes and go over treatment options that may be of benefit to you: such as 1) food allergy testing 2) stool testing 3) colonoscopy/endoscopy and 4) diet + supplementation. There is always a time and place for medicine, especially when you are in a full blown attack, but the testing and seeing a functional medicine doctor will help you in the long run.
As long as you make sure a new doctor you find has an MD certification, you can trust that they have complete knowledge + more of how to treat you, like your current doctors.
You very well could have gluten intolerance. Gluten intolerance can manifest in the same way celiac does, without testing positive in blood tests! I didn't truly think I did, but I tested for it on the GI Complete Stool testing, and it came back positive! I have colitis/crohns and only recently started getting the worst joint pain, and my doctor told me to truly make sure I was avoiding gluten 100% and taking it seriously. So now I avoid any ingredients that contain gluten: barley, wheat, rye, gluten, malt, dextrin, brand, enriched/bleached flours, even flavorings like soy sauce, carmel sauce, chocolate liquor, etc. If you want to give it a try, test it out for a few weeks and see how you feel.
Likewise with other allergens: dairy, nuts, eggs, maybe even sulfur!
I really, really hope you take this as a form of help and decide to make some changes with what you're dealing with here. I hope I was of some help to you, if you ever need others to talk to, or me, I'm usually in the Ulcerative Colitis forum where its pretty busy! :)
I'm not sure of your
location, but if you're in the northeast, there are sure to be some naturopathic doctors that will turn up in your search!
Meds: 2400mg Asacol daily
Dietary: Candida-Control Diet, Gluten-Free, VSL#3, Phytostan, ParaGuard, Similase, ADP (anti-fungals)
Amazing Herbs: Slippery Elm, Licorice & Marshmallow Root / Peppermint & Chamomile
Grad student, diagnosed severe Crohns/UC - Sept. 2011
In the past, SCD=remission, Metametrix lab tests reveal yeast overgrowth.