Hi, my name is Andrea, 49yo and reside in Northern California. I have been off work since July following my diagnosis with Celiac Disease.

When I was 26, I went to an allergist who almost dropped to the floor when seeing I had reacted to everything he skin tested me for, insisting something was wrong, but having no other explanation. I have had so many allergic reactions to medications over the course of my life that I soon tired of being told, You couldn't possibly be allergic to so many things! Well, I was and I mean real allergies, not sensitivities. I'm talking anaphylactic shock, welts, shortening of breath, swelling of my tongue, lips, throat. I can't tell you how many times I've gone to the emergency room to wait out an allergic reaction without ever checking in just bc I've been scared to be alone. Benadryl has been my best friend, but was otherwise uncomforting. I have had some scary experiences and my doctors most often seemed to think I was making them up or, exaggerating or, that my symptoms were stress-related in the case of hives bc again, I "couldn't possibly be allergic to so many things!"

I had been sick off and on for 18 years previous to this CD diagnosis and been off work for a total of about 4 of the last 10 years for what my doctors labeled as IBS, Dumping Syndrome, Bile Salt Diarrhea or, stress-related IBS. I never really bought into any of that, have always struggled to find a root cause and now, it does seem I've found it.

Aside from that, in 1999, I spent the whole year fighting to maintain my health, my job and my sanity, going to the doctor 1-2x a month throughout the year for digestive problems. Then, my gallbladder burst after being on medical leave for 3 months with no known diagnosis. They knew I had a gallstone - a gem - but, kept insisting it wasn't causing my problems and sending me to a psychologist for stress, who kept sending me back to them saying this lady is physically sick, not stressed and this went on for 3 months until one morning I woke up dry heaving, unable to stand and in severe pain. I had been essentially bed-ridden already. My doctor had refused to admit me to the hospital previously and on this morning I took myself and ended up in emergency surgery. Long story short, I was a teamster throughout this time and though they were taking monies out of my paycheck for insurance, they never purchased insurance for me thus, no one was really trying to help me, just put me off and get rid of me without telling me exactly why. My doctor's office would say, there's a 'problem' with your insurance, (but still take the appropriate co-pay each visit) and the union would say, no, there's not a problem with your insurance - everything's fine. And, the end result was that I almost died. It took me 6 months to regain my strength enough to work p/t and a year to be able to work f/t. And, as soon as I did return back to work, my employer fired me for absences leading up to my disability and well, I just got screwed with no recourse all the way around.

Since that time, any cold, flu or, virus I caught would likely wipe me completely out for at least a month and in the case of a stomach virus, for up to a year. I mean, wiped out to the point where I could barely take care of my daily needs. You know what it's like when you get a really bad virus and end up in bed just totally out of it for a few days, in a stupor? Well, that's what it was like for me, only this same phase lasted for months.

Over time, my "IBS" just continued to get worse and I began the same ritual of going to doctors, getting the wrong diagnosis and being put off, treated like a psych case, though far less frequently bc I had been so put off by my gallbladder experience, I was reluctant to go.

Because I have worked and not worked during this time, I have found myself with insurance and without insurance at various times. It really didn't seem to make much difference as far as my diagnosis and care was concerned and in fact, I can say, a lot of the time, it seemed I got better care when I had no insurance. I was off for a little more than a year beginning about 3 years ago after getting a horrible stomach virus I just couldn't kick and finally, found a doctor who gave me a script for Welchol, which while it didn't stop my IBS, it certainly improved it and I was able to get up and get back to work for about 2 years - come home and drop, yes, but get to work nonetheless. Life has been rather dry for about 4 years now. Even if I was working, I was unable to support any of my relationships and most fell away in time, which was okay bc as I say, I couldn't participate anyway.

I had managed to get myself into a good position right before my diagnosis in July and had insurance when I was diagnosed, but other then giving me the CD diagnosis, my doctor did nothing for me - no bone density test, though I was severely calcium and D deficient and had been having severe leg, joint and foot pain. No referral to a neurologist though I had complained of not being able to sleep bc my restless leg was so severe - I'd wake up several times a night with my foot aligned with the ceiling. Telling him about my memory problems and slurred speech bought no referral either or, reaction. He just basically told me to go home and study up on CD via the net. Not even a referral to a dietician.... So, I don't know. My facial pain, my scalp pain and extreme facial dryness, he chalked up to being just another unknown allergy. Hmmmm....

My diagnosis came about after I had contracted yet another stomach virus, which turned into colitis in June. I am not altogether sure if the stomach virus and colitis caused me to drop back into bed stupor-tized again or, if it was actually going GF and all it's corresponding strange reactions. I walked around in a pouring sweat for 2 months after going GF. The stench was so bad, it filled my house like a football locker room. All I know is that for the first 5 months, I was totally immersed in some distant land of sleep and fibro and itching and stomach pain and brain fog so thick, it was all but blinding - a place where one couldn't think for themselves.

I really hate doctors. I think they know I hate them at this point. I try really hard not to show it, but it must come through somehow bc I never seem to get any help from them. I do know they seem to be rebuffed whenever I question them, which I do question them. I think it scares them. They don't like to commit to much.

At this point, I have a much better grasp about what I need and what I should have already received than I did when first diagnosed, but having found myself with no insurance again, I've got a fat chance of getting it.

I finally rejected their insistence that everything that is wrong with me is not related and have started taking a more holistic view of my condition. I truly believe that all of what is wrong with me is CD related and that I can halt it's progression if I can just get my gut to heal and start absorbing things like amino acid, again.

My doctor had insisted I go off all my supplements right after diagnosis. I've gone back on them and added more. I've gone off soy, corn, dairy and all grains. And, seemed to be getting better, but I'm still steeped in brain fog and have a lot of dementia-like moments. The skin on my face continues to slough off. Otherwise, I'm making good progress!

I am hoping that by coming here, I might gain insight into what others have gone through and maybe, get some tips on what else I might try that I haven't already. I desperately need to find something that will help with my face. I do believe, it's suffering from a shortage of blood flow.

lol - I hope some of this makes sense!

And, look forward to meeting others who are in similar positions as my own.

Thank you.