• Announcements

    • Scott Adams

      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Another PO'ed Celiac

Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Another PO'ed Celiac

  • Rank
    New Community Member
  1. Have Celiac...DON'T CARE!!

    I'm not sure who might be following this thread anymore but I thought I'd add some more interesting information into the mix. So because of my constant battles with candida, my immunologist thinks I have chronic mucocutaneous candidiasis which fits as I have struggled with yeast problems for years. It has also been shown to raise Gliadon antibodies (here is just one of many studies proving that fact: https://www.ncbi.nlm.nih.gov/pubmed/19549274). This fits the pattern of when I have abdominal pain, when I tend to have hormonal problems, when I have more 'brain fog' etc etc. After I was treated for a month with fluconazole, I felt a lot better. I should have had my antibodies retested at that time. Also Celiac is not the only cause of villus atrophy. I am definitely lactose intolerant (according to my genes, I actually had a 70% chance of being lactose intolerant which is a LOT higher than my chance of Celiac so I highly doubt Celiac would have been the cause of that) and at the time of my biopsy there was a high likelihood of SIBO and/or Candida too. I responded extremely well to a course of Xifaxan which gives even more credence to my theory. I am extremely intuitive and I know when something just doesn't feel right. I initially accepted my diagnosis. I was pissed off as hell about it, but I had accepted it. Until things began not adding up. Candida has been known to trigger Celiac too, so it's possible that it was the cause and I may actually still have it despite adequate CMC treatment, BUT...some people who have CMC who get treatment actually see those gliadon antibodies go down as well without a change in diet. There's a lot there that at the very least casts doubt on the diagnosis. I also have absolutely NO malnutrition of any kind. Even with my gastric sleeve surgery you would expect to see SOME malnutrition and my doctors are scratching their heads on that one. They've tested all kinds of vitamin and mineral levels and even used alternate tests for some of them and still everything shows perfectly normal there. Throw in the fact that even on strict gluten avoidance nothing changes AT ALL...not even the slightest bit...wouldn't you question your own diagnosis? I'll keep you posted as I move through this puzzling journey. I knew I had something strange and rare that had yet to be discovered! I really need to learn to listen to my own instincts more as they have yet to ever let me down...while so many doctors do time and time again!
  2. Have Celiac...DON'T CARE!!

    Thank you to all of you with advice and encouragement because I have read each part and it's helped me try to figure this mess out just a little bit more at a time. I thought I'd post a quick update to this ongoing drama in case anyone was interested or curious like me. I am actually more confused than ever after meeting with my genetic counselor. Do I have this blasted disease or not? I'm not trying to be in denial, but I also don't want to live this way if I don't actually have to! Which really is extremely important to me. It's literally killed my social life and between what I can't eat due to Celiac, and can't eat due to various fructose and other food sensitives and the sensitivities caused by my gastric sleeve (not to mention that I'm picky already and there are so many foods you couldn't even pay me to put in my mouth and if they were the only ones available, yes I'd likely starve)...my food list is extremely small and depressing. And even just having my family around eating things I can't have when I constantly request that they keep it out of the house is impossible. The Genetic Counselor I met with is very reputable and experienced and I felt like he really helped me understand what things I need to be aware of and what are not a concern. This was his response to my question about Celiac disease: "There are two SNPs and one genoset (out of a total of 56 SNPs tested for Celiac disease) that have been associated with an increased risk of developing Celiac disease. That said, the two SNPs that you have occur more frequently in the population than Celiac disease does, so it seems very unlikely that they would cause that condition on their own. It might be worth talking to the doctor who diagnosed you to get more clarification about how that diagnosis was made." They did blood work and a biopsy, which showed a Marsh score of 3A but as I have been learning, the biopsy is pretty much worthless since we discovered that I am lactose intolerant (which actually did show up in my genes as a pretty high number and since avoiding the stuff, I haven't had even 1 round of diarrhea!) So now it's got me wondering about a false positive on blood work and what things can cause that and we should start looking at. I had recently been through quite a bit of trauma at that time so maybe it just set my system off attacking everything and now that it's calmed down things will be different. No one else in my family has Celiac which seems rather odd as one of my parents at least should have it which would be how I got it but they tested negative as did my kids! I swear I'm just a medical mystery that's bound to end up in a medical journal one of these days!
  3. Have Celiac...DON'T CARE!!

    Just thought I'd post an update in case people are curious. I got the results of genetic testing. I do have the 'Celiac gene' but it looks like I also have HFE hemochromatosis. This actually explains a lot... scarily a lot. Not sure where I'm going from here. Still frustrated beyond belief. NOT doing the blood draining treatment thing. I don't know how advanced my case is yet. I have more testing to do when I'm able to tolerate it. Just fed up and don't want to be messed with anymore. I've got POTs and am showing more and more heart issues meaning my stimulants will be taken away and I'll be back to sleeping my life away. Not sure what the point of anything even is after that. Funny thing is that Social Security Disability has picked this time for a review and somehow thinks I'm better and capable of 'some work'...now...at this time when I'm sicker than I've ever been. How is that for irony?
  4. Incorrect diagnosis?

    I just re-read your original post and I am more convinced than ever that it's Candida. The rashes and feeling like something is stuck in her throat are both things I have been very familiar with! Look in her throat with a light and see if you can see any white patches of any kind. Candida has been seen in some studies to actually bring Celiac on and also make it much worse. Look up the symptoms of oral thrush and Candida and print them out and take them to a doctor with you if you have to. I would insist on it, especially if she's had to use any OTC yeast infection treatments lately or as been on antibiotics anytime in the last...oh 16 years or so. Seriously...there are some of us that yeast just causes misery for! Especially for those who have the MTHFR gene (like it's highly suspected that I do grrr). Even just a trial with a few doses of fluconazole are usually enough to prove or disprove the theory with very little risk of liver damage. (Besides, the liver is one of the most amazing organs we have because of it's ability to regenerate! Before my weight loss my liver was horribly damaged with what they assumed was fatty liver and out of control liver enzymes...likely made worse by some of the many medications I was on. But now at 43, losing nearly 150 lbs and even after 5 weeks on fluconazole...it's the picture of health with perfect levels of everything. They really tried to find some damage from all that fluconazole too..haha!) Really hope you find a doctor that will listen and help and if they refuse to prescribe it, I would ask them why they think it would be so horrible to give it a small trial when you know of at least one person (me) who it was like a miracle drug for with so many of the same symptoms. I know there are a lot of docs who don't even believe Candida is a real thing, but all I know is that I experienced the pain and misery it brought on as well as the miraculous relief of it's treatment!
  5. Incorrect diagnosis?

    It can but they have shown time and time again that the liver bounces right back after the medication is stopped. I had some severe abdominal pain, cramping, bloating and major pain that went away after 2-3 days on Fluconazole! I showed visible signs of liver damage in the form of mild jaundice after being on it for 5 weeks, but blood work done since I stopped the medication shows no damage whatsoever. When you're in that much pain and there's a medication that can help, the risk can be worth it. The comment about her catching a head cold really makes me suspicious about Candida! A head cold or flu like symptoms are classic yeast die off and if you've been starving the yeast, that will happen! If you are able to see a naturopath, they seem to be a lot more help than gastroenterologists and should have no trouble prescribing fluconazole if there is any evidence of yeast. Check her skin for rashes, her mouth/throat for white patches, ask her if she's had symptoms of a vaginal yeast infection and there's another strange yeast related symptom that is dryness in the corners of the mouth or chapped lips! Another medication to ask about is Xifaxan (sp?). It's usually prescribed for diarrhea but a 2 week course of it helped me twice, once when I was having problems after my hysterectomy with rebound diarrhea from pain meds and all kinds of tummy issues to 'reboot' my system. And the other time after a course of strong antibiotics upset my system again but I wasn't having diarrhea, just pain, cramping, bloating etc. I'm not sure if it might help with candida or just other forms of SIBO, or can do a sort of system reboot, but all I know is that it was like a miracle drug. Pain and cramping were relieved after just a couple of days on it and I felt like a completely different person. This was all before my diagnosis of Celiac but those were the only times I've had digestive issues like that. (For some reason I've never had intestinal problems with gluten specifically. Only with antibiotics or other medications or something like fructose that sets my system off. Though I seem to have gradually become lactose intolerant too, but only with milk, like in my lattes, or things like ice cream or yogurt. Cheese and sour cream etc seem to be ok, so it could have something to do with the amount of actual lactose in something that I have problems with but taking lactaid beforehand prevents issues...at least so far!) The confusion of what can help and what is the cause of the trouble and what should I take or not take or eat or not eat can be a long frustrating complicated process so I wish you all the best in figuring it out. I don't know if this info will help or not but I sure hope it does and I can completely sympathize with her! Oh one more thing I forgot! Ovarian cysts can actually cause a lot of gastro issues too. I had a 5 cm one that caused all kinds of strange issues. It's amazing how something seemingly unrelated can be the cause of so much misery!
  6. Have Celiac...DON'T CARE!!

    Thank you for the clarification on thyroid and parathyroid. I was too tired to look it up last night. I am not jittery and don't consume a lot of caffeine. 1 zipfizz has less caffeine in it than a cup of coffee. And I just started back up coffee yes, but it's about half a cup a day. That I drink throughout the morning and the zipfizz throughout the afternoon/early evening so it's spread out through the day and not actually a lot. I have plenty of calcium in my body so I don't need more of that but I have been trying to add in the magnesium. Magnesium Calm is horrible on my system but the RelaxMax seems to be ok for now. I am looking at ways of getting in some more vitamin D in natural ways though I'm still wary of it for what it did to me before. I think I'm going ot have to wait to see what my doctor finds out before messing too much with more supplements...especially given the fact that I have no evidence of malabsorption anywhere. Not losing weight, not wasting away, no diarrhea...nothing like that. And since I've added the hydroxy/adeno forms of B12, my brain has been getting consistently clearer and my neurological symptoms are vanishing. I do have a IgG4 deficiency which suggests common variable immune deficiency which leads to repeated ear, sinus and lung infections...of which I've had many! As a child I had constant ear infections leading to the placement of many ear tubes, an adenoidectomy, a tonsillectomy and another adenoidectomy as they apparently grew back 'double'. As an adult I've had a few ear infections, but many sinus ones and have even been hospitalized for a lung infection including having a lung biopsy. Looks like it's very possible that I don't have Celiac after all. It's very possible that CVID, Candida and my body reacting to diary could be to blame for my diagnosis. As I said, I tend to be very intuitive about my health and something was just not sitting right with me about this Celiac diagnosis. I can't say for sure yet, but something is definitely off. I'm not going to go crazy on the gluten but I'm not going to purposely avoid it either. Because it seems to be making no difference to my body right now, good or bad. That just doesn't seem right. Leave it to me to have something rare and weird as has literally been my whole life!
  7. Have Celiac...DON'T CARE!!

    Totally understandable and respectable. Like an addict who can't be helped until they want to be...
  8. Incorrect diagnosis?

    Try treating Candida? If she feels better after a week or so on something like fluconazole, I bet that could be the issue. It can cause all that and more! Especially after exposure to antibiotics. It can't hurt and is a rather simple step to try to rule out.
  9. Have Celiac...DON'T CARE!!

    Yes finally understanding! Thank you! This is exactly what I needed! I keep stressing to my doctors that I think I have a thyroid issue and have been avoiding Vitamin D because my instincts are telling me to and I've learned to listen to them. I have always been super sensitive and somewhat empathic my whole life. I am used to to and it is exactly why I don't watch TV and am hauled up in my room and have connected with a wonderful and supportive community of like minded beginning artists, most of which have health issues of their own and we've all chosen art as an outlet. This place is a positive wonderful environment that has saved me more than once! They have tested my thyroid many times and in different ways and it consistently comes back normal even though my temperature is low. I still think it's that condition in which my body reacted to stress but is stuck and can't come out of stress mode and I likely need to be on some temporary thyroid medication but they think I'm too sick to be on it right now and have referred me to another doctor of whom I will be seeing the Monday after next. Yes I did see and appreciated the liquid nutrition advice but I have yet to find one that I can get past the taste of. Also I avoid things that come in a can due to the fact that I can actually taste the metallic flavor in the food or drink within it. I cannot stand that taste, it's awful! I wonder if it has something to do with my metal allergies. Not just to nickel, but also to aluminum and surgical steel etc. I even have to use Tom's Natural deodorant because it's the only one that doesn't contain aluminum. The medical care in this area and from what it sounds like, in the entire country has become something to be feared. When did doctors stop actually caring about their patients? The problem is huge and the solution is a long windy perilous road that I don't see anyone taking during my lifetime at least. I mean jeez...just look at who was voted into the White House if you really want to fear for the human race. Where did common sense, empathy, compassion and intelligence go? Sorry, I digress...but feel free to hijack the post because now things are getting good. haha
  10. Have Celiac...DON'T CARE!!

    BTW...I don't have diarrhea! And have been through the battery of tests for autoimmune disease and they have all been normal. I have been told by a very reputable doctor who is up on all the latest research and is brilliant and highly regarded in his field that the chances that I have an autoimmune disease with these kinds of numbers is astronomical. Something else is going on and he's determined to find it. Sorry but I don't see how it's possible to have Celiac which is an autoimmune disease, without some kind of test showing I have an autoimmune response. These are not the normal standard tests, these are specialty tests that can pick up minute patterns that normal autoimmune tests can't. Mine were normal...all of them.
  11. Have Celiac...DON'T CARE!!

    I CAN'T EAT WHOLE FOODS BECAUSE OF MY SLEEVED STOMACH AND I'M BEING TOLD TO CUT OUT EVERYTHING PROCESSED. SERIOUSLY? I have literally been told not to eat every single food out there by a combination of difference sources. By the way, supplements are processed. So are protein drinks and anything that comes in a can. I am not lacking in any vitamin or mineral except for vitamin D and I have had many many tests. This is why nutritionists and naturopaths are stumped. Not only are my tests in normal ranges..they are practically in perfect normal ranges, right in the middle. I have taken Vitamin D supplements 3 times, different kinds and got kidney stones all 3 of those times. You can disagree all you want but I can't change the fact that it happened. NO, it's not common and no it's not normal but what do you think I can do about it? I have a bit too much B12 in my system...my tests said greater than 1500. It's because the form I consume is not a form that my body can use. I can't use the methyl form, which is why I'm on the hydroxy/adeno forms. My body requires those specific forms to function and my concentration improved greatly when I began taking it so no, I won't be stopping the B12. I had my sleeve done in Mexico so no I can't go back to my sleeve doctor. I've had tons of imaging and everything looks fine with it. The endo found mild chronic gastritis...that's it. It stated that the sleeve looked great otherwise. I appreciate the notions but I'm done researching every little chemical or vitamin or mineral or organic compound or this combination or that one...because there are far too many and I have far too little time, energy and attention span. I'm not a chemical engineer nor do I feel like being a science experiment. It would take a lifetime to figure it all out and I don't have that much time since my doctors and I suspect that I have the vascular form of Ehlers Danlos. I plan on enjoying what little life I have left to the best I can and my loved ones understand and appreciate that. The risks associated with gluten ingestion in a Celiac are far less when there's not enough time for the damage to build up and cause problems anyway. Thank you for trying to help but I'm a lost cause. I came here for help in figuring out what could cause a false positive in a Celiac and I've gotten everything but. I'm glad you all have it figured out and are able to live your lives but telling me what to do is not helpful when it is all stuff I have already tried on my own and found not helpful. And as I said before, I have a therapist who is great and helps me out a lot but there isn't a therapy in the world that can get me through this, nor will I ever touch an anti-depressant. Everyone has their method and thinks they have it figured out and that's great but the problem is that I won't ever know unless I try all these things one by one and I don't have the energy or will to do so, nor can I afford it. (And I love how everyone says your health is worth the expense. That's nice, where do you expect the money will come from when it's not in my possession to spend on my health?)
  12. Have Celiac...DON'T CARE!!

    Like I said, one by one everything in my life is being taken away from me while all I do is continue to get worse. The only vitamin level I've been low in is Vit D...but Vit D supplements cause kidney stones. My B12 is through the roof and yeah I have suspected MTHFR mutation so I'm on hydroxo and adeno forms of B12. I did magnesium Calm which caused intolerable cramping so I'm trying other forms. I'm on top of all of that but the more I learn the more I realize that it's a hell of a lot more complicated that any doctor has the patience to figure out which leads to overwhelming frustration. I've stumped and been referred on from 2 nutritionists and naturopaths! I obviously don't eat the graham cracker Sargento's but somehow I must have missed that gluten statement. There is a website I check for reference and they were listed as safe so I'm going to have to recheck my sources I guess...in the future, when I actually care again. I know everyone loves to offer me all kinds of recipes and advice and food suggestions but please listen when I say I DON'T COOK! It's completely pointless for me to cook when 2 bites has me full. In fact, most of the time when I do try to cook, I'm full before the meal is even ready because of tasting and adjusting it along the way! Cooking ahead to reheat later...NO! It tastes nasty to me and I won't ever eat it and it will go bad and end up in the trash. It's not something that will EVER be part of my life. Seriously...the definition of insanity is doing the same thing over and over again and expecting different results. You guys keep repeating to me to eat or not eat the same things over and over. I can't tolerate most whole foods...that includes fruits, vegetables, meats and grains! Thank my sleeved stomach for that. Yeah I fully realize that is what I'm supposed to be eating but I CAN'T AND IT'S NOT MY FAULT! When you make a list of food that I'm allowed to eat, cross off everything that my sleeved stomach can't handle, cross off everything that I wouldn't touch with a 10 foot pole, and then start crossing off other things that are suspected to be causing me this problem or that....THERE IS LITERALLY NOTHING LEFT! This is what none of you seem to be grasping and I know you are trying to help and believe me I appreciate it but everything you bring up is already stuff I have tried, researched and learned about, or had problems with. Basically what it would come down to is that I don't eat and am fed with an IV for the rest of my life...only wait...that I can't even tolerate due to allergies with adhesives and even rubber and plastics. I even have a reaction to things made with polyethylene (you should have seen my arm after a disposable blood pressure cuff was left on it for more than 24 hours). All of these new problems have happened only since I cut out gluten so whether my body is reacting to not having it and flipping out and attacking everything else or it's coincidence or random. Who knows but it's not BECAUSE of gluten causing the problem when it happens after I stopped eating it! I am probably the most sensitive person you will ever come across but not because of being allergic to the world like I have seen so many people that struggle with allergies are. I am a highly sensitive person... times 100. I feel and sense things most people don't. I see, hear and taste things most people don't. I'm not crazy, depressed or delusional, even though I do see a therapist regularly. She actually thinks I'm one of the sanest people in the world even though I've convinced myself that I have to be completely off my rocker crazy because of the intensity of everything I experience. A beautiful sound or color or even witnessing an act of kindness can move me to tears of joy that I can feel as some kind of ecstasy. A harsh word can be physically painful and make me not ever want to go out into this insane cruel ridiculous world ever again. I don't watch TV because the absurdity of it makes me sad for the human race. The cruelty reported in the news is something I can physically feel and I have more empathy in my little finger than the combination of everyone else in an entire city. So you tell me how anyone can expect someone to live like this without being selfish, cruel, or having completely no clue what I actually go through? I don't want to die because I can actually feel the sorrow coming from my loved ones. My brother committed suicide a couple years ago as well as a good friend's son (whom I took care of as a baby and is how she and I met and became friends) so I have first hand experience about how it affects lives. One of my friends actually runs my state's chapter of the American Foundation for Suicide Prevention. I honestly don't know why I came back and started this thread because none of you can really understand. Yeah, there are a lot more people that have a lot more problems than me, but they are managed by avoiding things and they feel better. I NEVER FEEL BETTER NO MATTER WHAT! And the people that have worse conditions than me are taken seriously by their doctors and the people around them whereas no one can see or understand my conditions so no one REALLY cares, other than my husband who is my best friend in the world and is the only reason I'm even still here. What would you think of a person who has a sick pet that hurts and cries out all the time that has a disease with no cure, and this animal isn't allowed to have treats or maybe even has to be fed with a feeding tube and cannot go outside or chase balls or do any of the things it loved to do before it got sick. But yet it's a relatively young animal and can be kept alive for years as long as it is deprived of everything it loves because those are bad for it and could possibly cause it more problems. This poor animal is being kept alive because it's owner thinks they love it and they don't want to grieve it's death, yet every day of it's life it suffers. If you REALLY TRULY loved this animal, you would let it go, wouldn't you? You would have it put to sleep because that is the compassionate thing to do. You would end its suffering and although losing it would be hard on everyone that loved it, you would all know that it was the right thing to do...right? Because the owner that doesn't is selfish and cruel and has no compassion to end the suffering of a living being. Right now, that animal is me and everyone around me is talking my ear off about why I should stay alive because if I die I'm really just hurting everyone around me. Can you see the preposterousness of that statement? We have compassion for animals, but not people? As I said, I don't want to die but right now, I'm barely hanging on, so what do you suppose is the most important thing for me right now? Make my life worse by taking more things away from me...or understand that there are some needs that are imperative because they are accompanied by a will to live? Let me put it another way. Diabetics are not allowed to have sugar right? Except what happens when their blood sugar crashes and they become shaky and are about to pass out? They are given sugar to avoid the immediate crisis of death regardless of its long term affect on their health. It may take a month off their entire life expectancy but without it they won't live another day so you do the math. I'm not stupid, naive or in denial. I'm actually very intelligent when I'm not too tired to access my brain. There's a war being waged between my intelligence and my sensitivity. Feelings are not rational no matter how much you try to explain things to them. If they were, there wouldn't be so many broken hearts out in the world. No one would love someone they aren't supposed to love and marriages would last forever. Right now, my brain has come to the realization that there are some things my sensitivity needs to survive, much like a diabetic in a low blood sugar crisis. Even my husband has come to that realization and supports that need. Why can't anyone else? And seriously, if you think this whole thing is just a tantrum over not being able to have a cookie or some cake or something...just...omg.
  13. Have Celiac...DON'T CARE!!

    "Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade." Ok again..I cannot eat most of what is on that list! How would I survive 6 months on that? And what do you mean by non-responsive? I have no intestinal problems with gluten. Before my gastric sleeve the only foods I had trouble with were fructose in juices and aspartame. No allergies that I knew of, have never had an anaphylactic reaction to anything and nothing ever seemed to upset my stomach. No matter what I ate or how little or how much, the only time my weight ever budged (always going up) was at times of increased hormones (birth control pills, pregnancy etc...even gained weight while breastfeeding which baffled doctors) or when put on certain medications, especially prednisone (I won't go near a steroid of any kind ever again). I could eat nothing but salads and not lose a pound...or bags of candy and not gain a pound. Really bizarre. But I was 300 lbs with diabetes and so much pain I could barely move so out of desperation, when my health insurance denied coverage for weight loss surgery, I had it done in Mexico. I lost weight agonizingly slowly even though I was eating the way I was instructed to and it wasn't until I was put on stimulants for my severe ADD and Narcolepsy/Hypersomnia that I really finally began to lose weight and feel better. Tests weren't clear as to which sleep disorder I have other than Sleep Apnea due to the medication I was on. But I couldn't stay awake and would fall asleep instantly throughout the day and could sleep 14, 15, 16 hours or more and barely get out of bed, almost feeling drunk, even though I faithfully used my cpap machine. Didn't matter what I was doing, I would feel almost like a veil drop down over me and I'd be sound asleep in seconds. I started losing weight and felt better than I ever had til I went on a hike and ended up with an avulsion fracture, had my periods return with extreme bleeding and pain ending with a hysterectomy, fell off the counter, got rearended, fell off a ladder and went through a bunch of stress over a complex ovarian cyst that ended up rupturing before I could get in for surgery landing me in the ER where I was misdiagnosed as being constipated...seriously...not even joking (we are still considering a lawsuit on that one). I was pressured by my doctors to still go through with the stupid scopes which I did not want to do but did it any way to shut them up and prove that the pain I was in was related to the cyst and not GI. The only thing they found was mild gastritis (likely related to the gastric sleeve), and the biopsy was Marsh 3A so they sent me for blood work and diagnosed Celiac and sent me on my way saying avoid gluten and see a nutritionist. I was still having some minor pain which was diagnosed as a suture granuloma from my hysterectomy so I had surgery once again early this year to remove it and repair some damage. Meanwhile as you can imagine with all this going on, I began doing less and less and experiencing more and more pain. Besides going through the pain of being rear-ended where my head was snapped in such a way that not only did I get whiplash but I managed to bruise the back of my head smacking it on the head rest, the falls and other injuries as well as the years spent being so overweight mean pain in my low back, buttock/upper thighs, hips and SI joints. I've done physical therapy, chiro, etc etc all the things you do and all the tests. Then for some unknown reason my left eye has gotten super blurry and there are blood vessels growing into my cornea and the specialist has no idea why and has never seen this thing which is affecting the center of the cornea rather than front or back of it. I basically see as if I have a bad cataract and the only treatment is a corneal transplant which I don't see the point in doing until we know what caused it because seriously...they leave stitches in your eye for a year (??!!) and you have to be on steroid eye drops and there is just no way I'm going through all that to have it happen again! The healthier I try to get, the worse I seem to feel and now I spend most of my time in my room because our bed is the absolute softest we could find and the only surface I can sit on because of the butt pain from bursitis or my tailbone or whatever hurting. Meanwhile I've been forced to eliminate most foods from my diet and passed around from specialist to specialist because no one seems to know what is going on with me with all this pain that isn't seeming to get better with any of the treatments. I research things and try to find different kinds of supplements and have tried this and that and that with this or without that etc etc etc. A naturopath did discover I have Candida so I was on fluconazole for over a month and we are hoping it's gone but she has referred me to someone else now who was out of office for 3 weeks and can't get me in until the end of the month. So there you have it... that's what brought me here because my health sucks beyond belief, but I have an amazing husband, family and friends who are trying to help me through it as well as an outlet in a new love of art. I've lost 140 lbs but still am about 30-40 or so overweight but I'm ok with that. I'd like to lose the rest but right now I'm focused on trying not to feel like death. I'm tired and in pain all the time and wondering why I'm torturing myself on a diet that obviously is doing nothing for me. So I gave up...I don't even care anymore. This whole thing is just beyond ridiculous. What's the point of having a life if it's full of misery anyway? I'm going to enjoy what I can of it, any way I can because it's all I can do! Make a little more sense now why I'm so fed up?
  14. Have Celiac...DON'T CARE!!

    After...The sleeve was over 4 years ago, the Celiac last December just before Christmas. Before going gluten free, I had no stomach issues at all, just a large ovarian cyst that was sitting on my bowel causing pain with movements, which is why they talked me into doing the stupid scopes that I did NOT want to do. Once it ruptured (which was a whole traumatic 10 page story in itself) and the pain from that went away, the bowel pressure/pain was gone. (Well, no stomach issues other than the ones the sleeve caused with certain foods. That has pretty much been the same since I had it done.)
  15. Have Celiac...DON'T CARE!!

    Sorry, coffee was one of the things that was suggested I eliminate because of the amount of milk I used to add to it and the caffeine causing problems since I take a stimulant for my sleep problems (narcolepsy/hypersomnia) and ADD. So I did to see if it would make a difference but now that I see it didn't, it's likely going to come back at least a couple times a week. Yeah the gastric sleeve definitely causes me a lot of the problems and it's the constant pain I'm in which is what causes me to live in my room. We've been trying to figure it out for some time now. My scans show minor problems and some osteoarthritis but it's only very recently that the suspicion for Ehlers Danlos came up. I was super tired and frustrated when posting last night so I probably wasn't making a lot of sense. It's been infuriating because every single doctor I see takes something else away from me. Don't eat this, don't do that, you shouldn't have pets, etc etc etc. I've just had it and have been pushed so far beyond my breaking point that I have no idea how I'm not locked up in a rubber room. So now I'm fighting back. If things are going to be taken away from me, I'm demanding to know why and want to see the PROOF! Cuz my quality of life... it's not really life at all.