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Found 1 result

  1. Hi, I am new to these boards and am looking for some advice. I have been doing the Amazing doctor race for over 25 years now and the best anyone can come up with is Chronic Fatigue Syndrome / Fibromyalgia. I have been battling this illness for over 25 years now and I just need something to end. About every few years I see a new doctor who wants to figure out what I "really" have besides Fibro. They do some tests, send me to some specialists and all roads lead back to Fibromyalgia. UNTIL LAST WEEK. I just moved to another state and started with a new Dr. A nurse practitioner with her doctorate in medicine and a well known diagnostician around here. So I went with intentions of getting back on Fibromylagia meds. Rewind, about 3 1/2 years ago I was given a glimmer of hope for all my problems. Cymbolta. Yes, it helped. Made some of my joint pain go away, made me a little less angry. But that was about it. I lasted about a year and then I wanted to try and get pregnant again (I already have one child). So I had to go off it. Going off this medication really pin pointed the decline of my health. Two miscarriage after that and now I can't get pregnant after being able to get pregnant 5 times quick in my life. Fertility doctor has no answer despite my eggs being a little less great due to my age. But he said it is still possible. All my fertility tests normal. Back to the new nurse practitioner. Of course, like so many, after seeing me for my initial visit, reading my thousands of medical records, listening to me list my host of one million symptoms from the past 25 years (chronic sleep deprivation, chronic fatigue, no memory, exercise intolerance, massive brain fog getting worse, chills that come and go, stomach bloating, chronic constipation, random bouts of IBS, unexplained weigh gain, thyroid cancer (fine now and levels are always fine), Wolf Parkinsons White (heart was ablated, fine now with that), eye swelling upon waking like an allergic reaction, massive scabs and head dandruff, pin and needles in feet and hands, arthritis in neck, chronic neck pain after injury, burning muscles and eyes after exertion, weird bladder issues, choliostatis of the liver when pregnant, muscle stiffness that is worse on awaking, chronic headaches plus migraines (sugar induced I think), weird chemical sensitives that come and go over the years, late puberty, miscarriage and infertility for no reason, loss of tooth enamel for no reason all of the sudden ( black on my tooth but dentist said loss of enamel, nothing else), stomach acid, cystic acne, irregular periods all of the sudden in the last few years, weird rashes and extreme itching for no reason, concentration issues, ringing in ears, eye twitching, eye sensitivity to light and night driving, hoarseness, muscle cramps, etc... And the list goes on), she decided she wanted to get to the bottom of "this Fibromylagia", and she actually used quotes with her fingers when she said it. She looked at some older tests I have, said I had some slight elevated liver enzymes (I have had this for years and years), and wanted to send me for a stomach ultrasound. It came back fine. Nothing wrong. The she sent me for a host of blood work. Different panels, didn't tell me what they were. Went and came back for the results. She said again I have slightly elevated liver enzymes, slight elevated cholesterol level (which I had had before as well despite eating a low fat diet my whole life). She said I have an elevated cortisol level, she said it could be why I can't lose weight but I needed to see an endo for it. I also had a large vitamin D deficiency requiring prescription in a huge dose once a week. The she hits me with the whopper. She did something called a Celiac panel and I have Celiacs. If you want to live, you can't eat wheat. No gluten, ever again. WHAT??? This women must have been out of her mind. Did she know who she was talking to? I am the carb queen. I live for it. Bagels, cereal, low fat cookies. No way lady, you must be wrong. There is no way I can stop eating that stuff. Quickly tears swelled up in my eyes. First I thought she was some holistic freak. Then I doubted it because no doctor has ever told me I had anything wrong with my blood work. I just didn't believe her. I left mad and sad. I went home to process. Here we're my numbers.... Immunoglobulin A : 128 (normal, range 70-400) Gliadin IGA Deamidated: 2.1 (normal, <20) Transglutaminase IGA Autoabe: 20.8 (out of range <15.1) I started reading and reading and reading. Could this really be? Could this be the answer I have been chasing for the past 25 years? I read more and started to wonder why she didn't advise me to go see a Gastro, the next obvious choice. She scared me. I immediately stopped gluten, just in case and to see what would happen. She said it would take time but maybe in two weeks I would have some relief. I researched, dropped $300 on gluten free products, bought every type of everything you could imagine, got schooled by another gluten free person, etc... I also immediately called her asking why she didn't recommend me for an upper endoscopy. She said she didn't need to, this is what I have. I asked her for a recommendation anyway. I had to know, I have to know. There is no way I can not know. I make the appointment for five days later and I go on my gluten free way. Five days of gluten free, maybe a little more clear but not so much difference. My stomach was doing circles, it's like my system didn't know what to do. I was in the bathroom straight for the first 24 hours, which is usually the opposite of what happens to me. Five days later, I go to the 1st Gastro. His nurse practitioner sakes me some questions, takes my vitals and puts me in the Dr's office. The guy walks in, doesn't shake my hand or introduce himself, looks over my blood for two seconds, says I don't know if you really have this but I will do the test, signs me up and walks out. Five whole minutes this jerk spent with me and asked me nothing. He says, don't worry, you can eat gluten. It doesn't matter either way, it won't effect the test. I asked him about the liver and the vitamin D, he replies it has nothing to do with any of this. I leave with a endoscopy planned for a week from that day. I left feeling upset. I got home and decided this was not a doctor I wanted to give my money to nor is he a doctor I want doing a procedure one me. What happens if I don't have Celiacs and I still have to deal with this guy to help me find something else? No way. I left and went to a dinner. I ate my first dose of gluten in form of two pieces of rye bread. Instant bloating. Wow, that's weird. I never even realized all these years that feeling in my stomach was bloating. I always just thought I could feel myself gaining weight every time I ate a carb. Lol. I continued that night with a bowl of ziti. It happened again. Wow. I went on to eat some cheese crackers before bed, just to see what would happen. Besides feeling like crap all day and exhausted (as usual), I woke in the morning with massive swelling under my eyes, like I had bee stings. Black circles with bee stings on top. You could see the blood vessels popping out. Stomach rumbling all the next day. Constipation comes back. I was shocked. Cold adding the gluten back in really make me feel something? I never in my life associated any of my pain or ailments with bread or pasta, never with gluten, I didn't even know what gluten was till five days ago. Wow! I decided from that moment on, no matter what, I NEVER WANT TO EAT GLUTEN AGAIN. It just didn't make me feel good. Since I added it back, my body is in what I call a "serious Fibromyalgia state". Eyes burning, body hurting, feels like I haven't slept in 10 years. My cognitive is so, so bad. Stomach is turning, bloated. And guess who just joined me? My hemmiroid decided to make an appearance all of the sudden. It's been a while but we reunite. Thanks! I go home, get some good recommendations from family to a good Gasto. I go. He spends an hour with me, learning my case, listening to everything from the beginning. Checking all my blood. Says this is a possibility that I have Celiacs, he sees it more and more and if I don't have celiacs, I probably have a sensitivity to gluten. He tells me he wants to do the endoscopy but now that I ate gluten free for five days, he wants to be sure we don't skew the results and wants me to wait another two weeks. And here is the kicker... You must eat gluten the whole time. SERIOUSLY??? Oh God, I'm going to die! I go home, cry some more, eat my gluten (and sneak in a few non-gluten things here and there, hope it's OK?) and now I wait. I am so anxious. This all makes so much sense. I can't stop researching and can't saying "WHAT If" "WHAT IF"??? What if this is my answer? What if this women is my savor? What if I have been poising myself and killing off my organs for 25 years and no one found it? What if??? That is why I come to this board, turning to people with I'm sure similar stories. I have endured so much. I have a sweet little five year old that is denied a functional mother. I have a great business that is suffering. I have a relationship with my husband that could be so much better. I have so much rage and anger and pain and I want there just to be an answer. Please, there has to be, please let this be it! Opinions from my test results? I know it sounds like I have it from everything I'm saying but what about the blood? How likely is it that I have this? Thanks for listening!!! I will post my endoscopy results here in two weeks, I promise. From the girl that couldn't imagine giving up "carbs" to the girl that is dying to, literally.
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