<<Disclaimer: Verify this information before applying it to your situation.>> Thanks to everyone who replied. This summary is getting long, so I'm going to send it to the list. If I get more answers, I'll send another summary. Original Questions: Has anyone had any problems when getting a CBC (complete blood count) done, where the blood platelets clump and they can't do a platelet count? Does anyone have any Sleep Apnea Problems? Responses to the clotting question: I had a blood "analyses" done where my blood platelets were clumping together. It was because I had mercury toxicity. I went through chelation and had the mercury removed. Now an accurate blood platelet count can be done. * * * * * * * * * * I had one test on my platelets where it was non diagnostic and nothing came out of it. I have mild sleep apnea and have a CPAP machine. * * * * * * * * * * I'm a medical technologist(med tech, lab tech). for reasons no one really understands some people's platelets clump in the EDTA (this is the anticoagulant) in the purple top tube that is used for the CBC test. at the hospital lab where i work in tyler, tx what we try first is to vortex the tube for 2 min(we have a vortex mixer that mixes things at incredible hi speeds-just shaking the tube won't do it) and then rerun the specimen. this only works on about 1/3 of the patients we have with this problem. if this doesn't work we try vortexing the specimen then setting up a manual plt count dilution in something called a unopette. we vortex the unopette immediately before we start the manual plt ct.(i HATE manual plt cts.) if the patient is an in-house pt and these things don't work, we ask for the specimen to be recollected in a purple top and a blue top tube. we get the purple just to make sure the first one wasn't just a bad specimen. the blue top tube has a different anticoagulant in it(citrate). the blue top works for about 1/3 more of the pts. the only problem with the blue top tube is that is MUST be run immediately after collection(the plts will start to clump in it too if not) and the result that the instrument gives must be multiplied by 1.1. the blue top won't work if it is collected at a dr's office and then sent to an outside lab. it must drawn and run immediately(some dr's offices have there own labs.) if none of this works and that does happen, we can give the dr an estimate only-plts apprear low, adequate or high by looking at a slide made from the specimen. our normal range for plts is 130,000 to 400,000 so an estimate gives them a ball park area. * * * * * * * * * * Yes, and it turned out to be that the medium that they use in the test was bad, not the blood. When they got fresh medium all went well. I had to have blood drawn again. * * * * * * * * * * This comment was on a lab report from blood work I had done a few months before being diagnosed. "Initial testing shows severe platelet clumping on the peripheral smear. The sample was vortexed and the leukocyte and platelet counts were retested. The platelet estimate appears adequate." I was told this is normal. * * * * * * * * * * Error in the lab ..they should re draw for free...their fault * * * * * * * * * * one more thing about those clumped plts. this "phenomena" can resolve itself and the next time you have a cbc done the plts won't be clumped. we have patients that will be clumped for a week and then suddenly the purple tops are fine. * * * * * * * * * * Notify the lab when you get the blood test done. I am pretty sure they can run it in a different type of tube. Probably 2 coag tubes. If this is always a problem tell your doctor. You may also be resistant to other types of therapies when they need to thin your blood. * * * * * * * * * * If your blood platelets are clumping that bad, you should talk to your doctor and maybe start taking an aspirin a day. I am on Plavix, an anti-platelet (keeps blood from clumping) drug because of a hole in my heart and a minor stroke last fall. * * * * * * * * * * Responses to the sleep apnea question: My son has sleep apnea and has a machine to keep him breathing at night ,he loves it ,so now he feels rested during the day and doesn't fall asleep when he's working and driving My platelets go down and are low but never out of sight , that's bad news * * * * * * * * * * I haven't been diagnosed apnea, but I sure have a terrible time sleeping. Even sleeping pills don't help a lot. * * * * * * * * * * I have had breathing problems whilst asleep. It obviously prevents proper deep sleep. I think this clears up once a GF diet is followed and a diet which does not stress the liver. This means no alcohol, no juice, no vitamins, no spices, little salt, etc. At least for a while anyway. I suspect GLUTEN leads to an overloaded and stressed liver which then leads to poor breathing due to poor blood energy and poor blood oxygen. * * * * * * * * * * From 1995: A post to the listserve: I'm a recovered compulsive over eater who has lived with CD most of my life without knowing what was wrong with me or even thinking that I was different than most except that my level of stress was higher and I had to push harder to accomplish things my friends did more easily. I'd been a fat man for more than twenty years, suffering also from sleep apnea and was a life long snorer of significant sound. Two years ago when I met my wife, who reads everything and has a special interest in alternative medicine, I was in a lot of physical, arthritis-like pain, had severe anemia and other CD symptoms. She figured out the problem and has changed my life dramatically. Five years ago I had surgery for snoring, an increasingly common operation in which a portion of the soft pallet is removed along with the uvula so that there isn't as much flesh to vibrate in the back of the throat when one falls asleep. It didn't work then but now that I've changed my diet it does. The point of this long message is my belief that sleep apnea is related to CD in this way; for me at least gluten is a serious toxin that produces an allergic reaction that kept the flesh in my throat swollen so that I still snored and had apnea worse than ever. Also it seems clear that what one is addicted to, one is allergic to. I once would eat a loaf of bread at sitting and suffer through the days and nights without putting the symptoms and causes together. Now I'm twenty five pounds lighter, sleep soundly, don't snore and function like a human. Lastly, and then I'll get off. For those who are not aware of sleep apnea. It's a silent killer, and extremely dangerous condition in which its victims function on about five percent of the sleep most people need. If it interests you, check into it. The combination of sleep apnea and CD should be examined. * * * * * * * * * * From a post to the listserver 1996: In response to Laurens' post...I too have been diagnosed with Fibromyalgia, Chronic Fatigue and Irritable Bowel Syndrome. (Lauren my pain is 80% better! YEAH!) I had an incredible sleeping disorder ... apnea Wow does this sound familiar. My mom has been Fibromyalgia, is Chronically fatigued, has sleep apnea so bad there have been days she could hardly function, severe intestinal distress. My father's mother had CD. She never knew it was hereditary. We never knew about hidden glutens. She didn't see her GI again after her initial diagnosis, and died refractory and in a lot of pain (probably had stomach cancer). My mom felt sorry for my recently diagnosed little sister and said she would go on the diet with her, for moral support. Wow has she felt better. There is no history of CD on her side of the family. There is a lot of history of stomach problems, her mom had Crohn's disease, among other problems. She has been GF for about 7 months now and really feels better, and the apnea has subsided, too. She doesn't want to eat gluten and go back to the pain to get the blood work and biopsy. She still has some pain, and some apnea. * * * * * * * * * * I have bad sleep apnea. Had surgery to try to fix it in 1996, but still wake all night long if I don't break down and take sleeping pills. And I am only about 20 lbs overweight - my doctors don't think I should have sleep apnea at all. It will be interesting to see what you come up with on this one. * * * * * * * * * * I do not have sleep apnea but do know people who do. My advice to you is to wear the BiPap at night.... Although the bipap can be uncomfortable it will make the world of difference in how you feel during the day, if sleep apnea is what you have. * * * * * * * * * * Thanks! Linda