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.

--though I'm sorry for the situations that led you here.

Yes, Celiac/Gluten Sensitivity is one of the great masqueraders, and can produce a myriad of symptoms (how were you finally diagnosed--blood testing, small intestinal biopsy?). And while it has gotten more publicity over the last decade, far too many doctors have not kept up with the emerging literature about it, and still believe it is a rare disorder only characterized by wasting rather than acknowledging the many possible presentations, many of which are not gastrointestinal.

I strongly urge you to visit our Celiac/Gluten Sensitivity forum, to read up on a lot of the info and talk with people who know the score:

http://neurotalk.psychcentral.com/forum13.html

And, pay particular attention to The Gluten File. This has been put together by Cara, aka jccglutenfree, who's been working on it for decades, and is, in my opinion, the single most comprehensive database on the subject yet accumulated (Cara is somewhat famous for this now):

http://sites.google.com/site/jccglutenfree/

I know that I sound really angry and I really don't mean to. It's just that I have worked very hard to hold it together in my life and tried very hard to take care of myself. When I am working, I am a high achiever. Up until about 4 years ago (aside from the year I was off with my gallbladder) I was always working out, riding my bike 30 or, more miles a day and doing everything I could to maintain myself in good shape. I've never been a drug user or, drinker and for a long time, did take everything my doctors told me to heart. It deeply effected me and the way I viewed myself. Even this last time when I was working, coming home and collapsing, but working, I managed to get promoted to a fairly nice position that I loved. I immediately went to my new doctor and told him my history and my fear that my IBS would overtake me again and told him I was really in need of some help in maintaining my new pace. And, he did nothing for me - no GI referral. Nothing. Taking a wait and see approach which is what landed me back here. I try to be an optimist and wanted to believe this wouldn't happen again, but now, looking back it is so clear that I needed care while I was still up on my feet. And, I just never understand why even when I have great insurance, no one has given me the opportunity to stay healthy or, at least, that's how it feels at this point. I used to beg someone to diagnose me so I could maintain my life - I love to work and that has always been my goal. I think my CD diagnosis should have been more obvious, but even the times I've seen a GI, it was never brought up. Even when I was sent to a dietician, no mention of gluten. I've jumped through so many loops and never landed standing up.

So, I am frustrated and I am exasperated and I am horribly worried that the person I used to be, I will never be again. I want my life to be so different than it is right now. I miss the person that I was. I have so missed just getting out and getting that runner's high while on my bike. I've missed contributing to others in the form of work and I've missed my ability to help others in need even more. There's so many things I want to do for others and I'm stuck back here in this place trying to get myself in the condition that I can maintain just myself again.

The course my life has taken seems so useless, as though it were so blatantly preventable and yet, no one's had answers for me. If I've come to question my doctors and second guess everything they tell me, it's only learned behavior.

I know that my neuropathy (I think what this current doctor calls 'some allergy' on my face is really beginning Trigeminal Neuropathy when put together with the other symptoms of pain and burning I've had) would have only continued to escalate if I hadn't gone back on supplements. I couldn't even function. Yet, when I went in for my 5th month check up after diagnosis, he didn't even run my nutrient levels. He ran all kinds of other blood work, but not my nutrients. That is when it really sunk in that I was in this battle alone. That I needed to look to myself for the answers I need. That is when I went back on my supplements and within days, found I was at least able to maintain my household fairly well again. And, I am getting better, so that's good.

I think that I'm at a point in my life - almost 50 - that I've just come to really resent these months spent incapacitated, thinking how much time do I have left? And, always, what I could be doing with my time, if able.

It is definitely going to be harder to pull it all back together at this point and I know I have my work cut out for me. If I even make it to the point I can take back control from my illness.

I hope that my feelings are understandable. I don't like seeing some of these feelings in myself, but at least can see where they originate from and have hope that I will be able to work through them.

You have every right to be angry. Many in your situation feel anger because knowledge about problems with gluten has been known for several decades and has been increasing in incidence. But the doctors aren't even thinking it. The same is happening with Lyme disease. When doctors don't know the cause of something they are quick to dismiss it as mental - all in your head (often said with chronic fatigue, IBS, and fibromyalgia as well.)

Growing from the ruins and fertilized by the anger and compassion for others are people who are trying to get the word out. There is Natelson who wrote "Your Symptoms are Real" , Wolfson with "It's Not Mental" this wonderful website called "The Gluten File" and counteless of sites around the Internet on gluten and casein-free cooking.