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About StacyA

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  1. StacyA

    Sleeping Disorders Linked To Celiac Disease?

    "Idiopathic Hypersomnia" basically means 'excessive sleepiness without a known cause', with 'Central Nervous System' thrown in for good measure it sounds like (gotta love how giving something a long name distracts us from realizing we still don't have an answer) - so if you still have the problem once your celiac disease is under control keep looking for an answer. It could also be initially caused by your celiac disease and then maintained by de-conditioning (ie are you so tired that you don't exercise? if so, lack of exercise will then make you tired, and on goes the cycle).
  2. Someone else mentioned a chiropractor for your tmj, and I'll mention the same, although I guess it depends on what is wrong with the joint. If it is out of place then a chiropractor is the perfect person to see. My jaw was out of place for a month - not the same as years of pain, I know - but if I had relied on the advice from my primary care physician it would have turned into years of pain, One visit with a chiropractor and it was back in place (of course it only took one visit because it had only been out of place for a month so my ligaments weren't too damaged - for some people treatment may take a lot longer).
  3. I know someone else posted last month about the Gluten in Medication Act (HR 2003) proposed on May 15, 2013 by Tim Ryan, but I thought I'd put another post. The act is sitting in committee, where most bills end up dying, so we can help by calling the committee's chair - Joe Pitts - or our own lawmakers and ask for their support. I've heard politicians say that if they get five phone calls that's enough for them to take another look. (They assume that for every person who takes the time to make a call, there are hundreds who silently support the issue.) Joe Pitts' office phone number is (202) 225-2411 and fax is (202) 225-2013. You can find your own representative at house.gov/representatives.
  4. I use maifun noodles now as my main pasta. I never found a 'gluten-free' pasta that I liked (in taste or texture) and they are all horribly expensive, so on a whim I tried the cheap rice noodles found in the 'ethnic' section of nearly any grocery store. They are gluten free - at least the brands I've found - cheap, and stay firm instead of mushy for hot pasta dishes as well as cold. I haven't found a bread I like, sorry. Udi's bagels are a little ok. Good luck!!
  5. Has anyone gotten zapped by Jack Daniel's BBQ sauce? I know it is supposedly gluten-free, and it is marked alcohol-free, but it has an alcohol taste and the ingredients list 'whiskey flavoring' - and I've gotten zapped before by liquors that supposedly are so distilled that not enough of the rye protein should be left.
  6. A thread on Ohio restaurants from 5 years ago has gotten so many views lately that I thought it may be time to update the conversation - specifically NE Ohio since that's what I'm looking for. These are restaurants I trust or others trust that are around NE Ohio: Outback (of course) Maggianos Carrabbas Bonefish Grill PF Chang's Eat'n Park Chipotle Panera Chili's Tommy's Pizza in North Ridgeville Altieri's Pizza in Stow Kathy's Creations Bakery in Alliance In the last year I've had an onion ring placed on my plate at Chili's, Rockne's and Eat'n Park - in all three instances the staff apologized profusely and brought a new meal (I gently reminded them that going back to the kitchen and simply removing the onion ring would put me at great risk) - and the new meal didn't zap me. I didn't put Rockne's on the list above due to limited experience with them and the blank look they gave - but they may be getting better. Anyone else have good leads?
  7. I switched to gummy vitamins (several brands are labeled gluten-free) because most standard vitamins also made me nauseated afterwards - not glutened, and I don't suspect any gluten cc at all, just nauseated - perhaps something about the coating and my system. It has worked well because I also take omega 3 gummy vitamins which taste bad but if I chew the multi vitamins at the same time as the omega 3 vitamins they are tolerable.
  8. StacyA

    I Am Starting To Hate Food...

    Everyone is right, you'll go through some mourning if you find you need to live without certain foods the rest of your life. Consider it this way - although you don't want to have food intolerances - you also don't want to have them and not know it. Once you get used to gluten-free shopping and cooking, though, you'll be very pleasantly surprised at your options. What I found helped me at first was to have a special cabinet that no one else in the house is allowed to open. I store my gluten-free flour and pasta there, but I also have stashes of Sour Patch Kids or Hershey Carmel Kisses and other goodies or comfort foods. I also make batches of Betty Crocker gluten-free choc chip cookie dough and freeze uncooked discs of the dough in freezer bags and periodically, especially if I'm feeling deprived, cook a big cookie and eat it right out of the oven when it's gooey and warm. Hang in there!
  9. StacyA

    Wish I Knew What Got Me Xmas Eve

    Consider the possibility of the dried fruit being cc'd during processing. I have done just fine with Ocean Spray craisins, however I suspect I got glutened by Sunmaid Tropical Trio dried fruit two years ago. The 'Tropical Trio' mixture did not contain raisins, but what I got from the experience was to be leery of dried fruits, particularly Sunmaid - not that I'm trying to bash that company at all, I am just being careful. Perhaps it would be good to keep a log of times you have symptoms and the foods you had in the 24 hours before (or less, I get symptoms nearly exactly 2 hours later) so you can have a record of products to watch. If you keep such a log, make sure to write down the brand names since memory can fade - like what brand raisins, craisins, rice, etc. If you have those products again and you're just fine, you can delete them from your list or make a note. In fact, for this reply I clicked on the 'Suspicious Foods List' document I keep on my computer to find the brand and name of the dried fruit mixture that I suspect zapped me.
  10. UKGail - can you provide a link or a little more info on the article you mention above? My mother has been dxed with PMR and is having a rough time, so I am looking for more info, particularly since I have celiac disease.
  11. Almonds mixed with M&Ms. They keep for a long time in my desk drawer. I get an immediate sugar and pleasure boost from the chocolate, and staying power from the almonds. Plus they aren't messy.
  12. I suggest calling two weeks in advance of an appointment, in case they need to research their ingredients and order different ones. For cleanings, I just take in my own toothpaste for them to use during the polishing.
  13. I drink liquid boost every morning, but I don't like that I'm using so many plastic bottles. In the last year or so I saw that Boost came out with a powder mix in my area, but it's made on shared equipment. I had trouble with Carnation Instant Breakfast that was made on shared equipment. Anyone use the Boost powder mix and be okay? I've tried other protien powder mixes but they either taste terrible or don't dissolve well (I mix it with my morning coffee to help dilute the coffee and get extra nutrition).
  14. I was traveling and went to an Outback a few weeks ago and the waiter told me Aussie fries were now gluten-free. The printed menu didn't reflect that, but he told me it had just happened, that they get them frozen now. I asked him if they were deep fried in the same oil as the bloomin onions, and he said he'd check with the chef. He came back and said they're 'now' gluten-free, but he didn't know about the oil. I didn't order them. Later, a manager walked by, so I asked the manager if it was true the fries were now gluten-free, and the manager shrugged and said he couldn't keep up with things, but if the waiter said so, it must be true. Not reassuring, of course, but I was wondering in anyone else has heard anything. The menu on their website is still dated 2010 and lists them as not being gluten-free.
  15. Thanks for the input! I challenged Singulair recently and had horrible diarrhea. Singulair never bugged me before my celiac's was triggered - but now it does. I may have to look into other options for my asthma, including food.