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Janine

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About Janine

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  1. I just tried the Kinnikinnick Many Wonders Multigrain Rice Bread for the first time tonight and thought it was fabulous! I took two frozen slices and toasted them just a little and ate them with butter and honey. What a wonderful treat!!! I am lucky to have just found a new local store that carries their breads (Ligonberries Market, Vancouver Washington). I am too delighted! --Janine
  2. Hi Ken- I get headaches nearly every day (including several bad migraines a month) and went off gluten for 7 months without any improvement in them. I am off gluten again because I relate so strongly with all the symptoms I read here. I know my intestinal track improves off gluten. Maybe the headaches and migraines will eventually go away if we heal? I know a lot of celiacs get migraines. I also have sleep apnea, but have had no headache relief after a few months on the breathing machine. Sigh... I have been fighting migraines for 25 years... I hope gluten free living will help you. Janine
  3. Hi- I had one suggestion. If you can find a doctor to agree that he has celiac or a wheat allergy or anything, you might be able to get him covered by workmans compensation or something. My husband hurt himself on a job and could no longer work in that field, so workmans comp paid for him to have retraining in another field. I am sure Chick-fil-a would have excellent coverage. Or maybe they would be willing to move him to another job in the company office? Good luck! Janine
  4. Monica & all, I just got my blood test results back and they are negative, too. This is my second blood panel and I thought the first was negative because I had only been back on gluten for 1 month after being gluten free for 7 months. But before this last one, I have been eating liberal amounts of gluten for close to a year . I wish my symptoms were as (DUCK) obvious as yours and some others. I notice my intestines are actually normal when I am off gluten, and are a mess now and before (diagnosed IBS as a teen). But even after 7 months offf gluten, I did not have improvement in my severe migraines and many other symptoms. Sigh. I'm not sure what to do at this point. I suppose the intestinal thing should be sufficient reason to stay off gluten. Hmmmm. In limbo, Janine
  5. Hi Judy- YAY for you! You go, girl! Sounds like you are asserting yourself and getting help. Fantastic. I am so proud of you! I'll be you'll be feeling better soon. Ha- you are right, on the second study, I knew I had a nice hotel breakfast coming in the morning and was not stressed . On the first one I got a little stressed, but talked myself into calming down. Still didn't sleep well either time, though. I know my uncle freaked out during his study. He ripped off all the connections and left! Ha! So you did better than that! BTW, for anyone who hasn't had their study yet, don't worry. Mostly they just glue a bunch of wires to you and say "now enjoy your sleep" . Well, that's great, Judy! Where are you going on your trip, anyhow? Hope you can relax and enjoy it. Take care, Janine
  6. Judy- It's great you have another sleep study. At least you were able to get them to do that! Good job! I think the best thing to do is to keep telling them things don't work when they don't. If I had never asked for help with my masks, I would have just been stuck with the first one they gave me. If the insurance company is going to pay for an expensive sleep study, I shouldn't think they would want you to be unimproved just because of a (relatively cheap compared to doctors, etc) mask. There are soooo many kinds of masks. Ask the techs what is available and see if anyone at the sleep clinic can tell ou specifically what your insurance will do. Will they let you rent equipment to try it out? Can you return an unusable mask? Stuff like that. A lot of my techs have had sleep apnea. I asked them what mask _they_ use! GOOD LUCK! I'll be sending you good thoughts! Happy Valentines Day! Janine
  7. Hi- I am trying to post a poll named "How many people here have celiac AND sleep apnea?". Let's see if it works... janine
  8. Hi Again Judy- Glad my info helped. I feel like a real newbie to this, but I have had great sleep techs and I have learned to ask a LOT of questions Here is a link to info (including a clear photo) on my Puritan Bennett Breeze Sleepgear nasal pillows mask: http://www.puritanbennett.com/prod/Product...=SPT&S2=&id=233 I like it best of the three masks I have tried. They also make one with a "dreamseal" which I may try. I have been very fortunate that the sleep center is letting me rent various equipment (the insurance co. is paying) for about 2 months to see which works best. They are really good and I think rather progressive. I actually got to have my sleep study in a Red Lion Hotel room! Really- they set up 4 sleep study rooms in the hotel next to the hospital. Very nice breakfast in the morning too! Ha- besides the being wired to everything, it was like a mini vacation. You also asked if my neurologist really said >yes, celiac "causes all kinds of neurological problems"<. He sure did. After 2 months of limited symptom relief he said don't give up on the sleep apnea CPAP (he said it takes people a few months to get used to the equipment, etc quite often) , but that if i felt i might have celiac, I should have the blood panel again. One thing I would really like everyone who reads this to hear is that it's SO important to find a really good doctor who will listen and talk. I have been to doctors my whole life for allergies, stomach problems, and migraines...and I no longer put up with "blah" doctors. It is worth it to keep looking for a good one. Hey- and I had a small success last night. I slept all night in my very own bed and didn't get kicked out or anything ! I think I might have slept pretty well. Could it be true??? We'll see how it goes tonight, but I think it did help to get used to the new mask on the futon in the living room without dh and the dog! Keep trying! Janine
  9. Hi Judy-- I strongly suspect I have celiac (had the blood panel today- my neurologist said it was a possibility that apnea could be caused by celiac -which I brought up- , as celiac "causes all kinds of neurological problems"). I was diagnosed with sleep apnea in August. Woke up from stopping breathing 18 times and hour and from leg movements 110 times an hour! I had no idea. I have restless legs, but I thought they stopped when I went to sleep! ANYWAY, I have been working on trying to find the right mask for about 3 months. I am on my third one! First I had a hard plastic over-the-nose one that moved too much and leaked air all the time. Then I got a better one that went over my nose, but it drove me crazy because it pushed on my upper lip all the time. Both of those had face straps that drove me nuts because they smashed into my face as I am a side sleeper. My latest one is a Puritan Bennett Breeze SleepGear nasal pillow mask. It has the litttle "pillows' that go into your nose a bit. Weird to get used to the in the nose thing, but I find the headgear much more comfortable because the straps are up higher and I don't have to lay with my face on them. They switched me to a machine with a humidifier to help with the dry nose that can occur with nasal pillows. I also had them up my pressure a little (from 10 to 12) because I was still waking a lot. In my sleep study they never got me completely improved with the CPAP machine, so we are still messing with the adjustments. I think it is essential to find a mask that you can stand. Also, make sure nothing else is keeping you awake. Now that I am occassionally actually sleeping, I notice that my husband's snoring and my dog jumping on the bed also wake me up. I am sleeping on the futon on the living room for the last two weeks to try to adjust and figure things out. I miss my dh too! About the neck wrapping thing...I'll bet you are not sleeping soundly and that is why you are still moving. I move much less when I have a good night. Also, the Breeze Sleepgear that I have now has the hose going up and to the top of my head, so it is not right there by my neck. Much better! I have also noticed that while sleeping on the futon, the hose can go up over the head of the "bed" and so I am not fighting it so much when I turn over. I might see if I can move my bedroom bed away from the wall and keep the CPAP above me when I move back in to my room ! I am curious too who has sleep apnea and celiac. Did you make a poll somewhere or are we just answering here in messages? Be well, Janine
  10. Hi- I suspect strongly that I have celiac. I did go gluten free for 7 months with an improved intestinal situation. I did lose weight rather quickly off gluten, but I was also not eating as much because I was still working out what to eat! I also gained weight when I went back on gluten, but I must admit to going a little bread crazy after not having it for so long. So who knows if that is why I gained. But my father swears if he eats any bread, he will bloat up 5 lbs over night. I do know that bread products do usually have a lot more sodium than people generally think, so that might contribute. In any case, I think I tested too soon after being off gluten so long (I had only gone off the gluten-free diet for a month before testing). I have been back on gluten now for about a year (and my intestines are back to being a pain) (and have gained more weight) and just had the celiac blood panel done again today. I have heard people say that it took them a year to feel better after going gluten free, so maybe 7 months wasn't long enough to get rid of my migraines, restless legs, fatique, IBS, ec etc! Not sure if this adds much to the conversation or not! Be well, Janine
  11. Hello, I have been lurking here on and off for over a year, but am recently refocused on celiac, so I decided o become "official." Thanks for all the info you have all already given me without even knowing you were doing so! This is a wonderful forum. The short story- I have had lots of the same history of many of the others on this forum (IBS, horrible & frequent migraines, fatigue, restless legs, intestinal probs, weight gain, depression, anxiety) for years and years. Recently I was diagnosed with sleep apnea in a sleep study. I asked the neurologist today if there could be any relationship to celiac and he said that he would not rule it out as celiac can cause many neurological problems. So, I am back to getting another blood panel soon (I had one about a year ago, but had only been back on gluten for a month after trying gluten free for 7 months & it came out negative). Anyway, as the title of this message says, I am wondering if any of you have heard of a connection between the two (celiac and sleep apnea). I have been sleeping a little better on the CPAP (breathing machine for apnea), but still have all my symtoms. I have no doubt I have sleep apnea, as I saw an improvement in restless legs, etc during the second study. But is it caused by celiac perhaps? Or maybe I just have two unrelated challenges to overcome?? Thanks for any input. Janine Washington State 45 yrs old married, two kids diagnosed with sleep apnea and feeling a strong suspicion of celiac
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