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Everything posted by lilu

  1. Wow. Given the current economy and how hard jobs can be to find, that's a tough one. I think at the very least he should start wearing a mask at work to avoid inhaling flour. If it's a local place, he could talk to the owner about creating some gluten free menu options. Still, as pizza is my favorite food, I think were I in his shoes, I'd ultimately have to find other employment. It would just be too hard!
  2. lilu


    No, no, no... Please do not give him gluten! From an addiction perspective that's like giving an alcoholic a little bit now and then to take the edge off. Giving him gluten now will only prolong the withdrawal. From a celiac perspective, additional damage will keep happening if you do this, which will result in a longer healing time and greater injury. I know it's tough, but you are so far into it that I'm sure there's a light at the end of this tunnel. Keep up the good work!
  3. lilu

    Lunch Ideas

    So, suggestions on what to bring FOR lunch... There are some good frozen gluten-free meals available if you have a microwave. EVOL bowls, Amy's bowls and some other products, Glutino frozen lunches to name a few. You can also bring dinner leftovers (which is what I try to do). I freeze them for a couple days first so I'm not eating the same meal two days in a row. You can also do stuff like make tuna or chicken salad and take w/ gluten free crackers, or pack a sandwich on gluten free bread. I round out lunch with yogurt, fruit, a couple pieces of gluten free chocolate, etc. You could also take homemade soup?
  4. lilu

    New To The Forum

    You can do this and we are all here to help! Recipes, tips, how-to-starts, shoulders to cry on, success stories to inspire, tales of mistakes letting you know you're not alone. Living with others who aren't gluten free, or keeping a gluten free home, related illnesses and other food intolerances. Whatever you need, just ask. It's here! Best of health to you!
  5. Can't help but notice that it sounds like you were eating a lot of processed foods. Maybe I misread? Anyway, if you have been, then you should know that even "gluten free" foods may still have some gluten in them. Depending on the agency they were certified by, they can still contain somewhere between 6 and 20 parts per million. While this amount seems negligible, some celiacs still react to even these small amounts. Plus, the more processed food you eat per day, the greater your total consumption of potentially minute amounts of gluten. It can add up. I'd suggest you eliminate as much of the processed food as possible, and see if that helps. A "whole food" diet of fruits, veggies, proteins, rice, potatoes, quinoa,and healthy fats is delicious and nutritious, AND more likely to be truly gluten free.
  6. lilu

    Cross Contamination & Loved Ones

    Re: body products, etc. I wondered about this too at first, and ran into several contradictory statements... Yes, you do need to avoid external products with gluten; no, it's just what you're eating that matters; yes, you should avoid gluten containing products, but only things like lip gloss and toothpaste; no, avoid all gluten containing products; on and on. Some people report reactions via absorption through the skin, others don't believe that is possible. And then I was standing in the shower one day and realized that when I wash my hair, sometimes the shampoo water runs into my mouth; when my husband shaves he sometimes gets a little shaving cream in his. I put on lotion (with my hands), and 20 mins later I might lick batter off a finger while making breakfast. To me, this realization made all the arguments moot. The bottom line is that if it's ON your body, it WILL end up IN your body, so it shouldn't have gluten in it.
  7. 1) GI docs can go either way... They can be very knowledgeable or not. It's kind of a roll of the dice. Also, they tend to look at test results as the defining criteria. The problem with this is that if you are not in an advanced disease state your blood work and/or biopsy may come back negative. Do the testing, but prepare yourself for negative results. 2) there are no set criteria or tests for gluten intolerance (outside celiac). So if your test results come back negative, you can still see if gluten is a problem for you by doing a trial gluten free diet for 3 months or so. If it improves your symptoms, and if they return when you begin eating gluten foods again, you have your answer. You need to be gluten free. Side note: if you elect to be tested, remain on a regular diet containing gluten until after testing. Going gluten free before the tests can skew the results negatively. And, if you do a gluten free diet trial and THEN decide to get tested you'll have to go back on gluten for about 3 months to increase your chances of getting accurate results. Doing this sucks if you are gluten sensitive because most of the folks here will tell you that going off gluten will sensitize your system to it (if you are intolerant) which means when you go back on for testing, your symptoms could be much worse during those 3+ months. YOU are the best expert when it comes to YOUR BODY. Trust your gut. P.S. If you don't already know how, learn to cook. Being able to prepare food from scratch opens the door to a varied, enjoyable, HEALTHY gluten free life. Over-reliance on processed foods can make the diet much more expensive, much harder to follow (limited options), and much less healthy.
  8. One thing I have found helpful is to provide them with MEDICAL information. Unfortunately, it seems that those who don't want to believe in the strict adherence required also don't put a lot of weight in information from sources such as blogs, forums, etc. When I've come across this kind of attitude, I find whipping out the "official" guns can help. Here is a link to the University of Chicago Celiac Disease Center's website, and it comments on the importance of strict adherence. http://www.celiacdisease.net/gluten-free-diet 1/8 of a teaspoon of flour can keep your body from healing! In other research, I've seen "1/30 of a slice of regular bread". There is more info out there. So when challenging skeptics, I recommend supporting your arguments with info from sources they are more likely to accept. I know it is frustrating, but you can do this. Become an advocate for yourself. Stand up for what you need. In the end, hopefully they will gain added respect for you.
  9. lilu

    Discovering New Gluten Free Foods

    I don't know if you have Albertsons, but where we are they carry a lot of Schar products
  10. Hubby's coming home from a LOOONNNGGG business trip tomorrow! Yay! I' took the opportunity while he was away to REALLY make our home Gluten Free - cleaned out the kitchen, new toaster, new utensils, new bakeware. Then I used all that wonderful new stuff to whip up some gluten free goodies! Homemade croutons, snack mix, bread, all the things I know he's been missing on the road!

  11. I had an issue with my doc not knowing what tests to order, and so I took the list of tests and contacted the lab directly to see if they offered the tests I wanted and if so, what the CPT-4 codes (insurancese for 'the common number id's of the tests) were. I bet you could contact the lab your doc uses and get the same info. It takes a bit of work, but I think you'll find that with matters of celiac disease or gluten sensitivity, you'll get further if you can give some extra guidance to the MD. Sad but true, IMHO.
  12. lilu

    Discovering New Gluten Free Foods

    Wow! Great ideas! You know, you can also make chex mix gluten-free... Just omit wheat chex and increase rice and corn chex to offset. Use gluten-free worcestershire sauce, Glutino or Snyders gluten-free pretzels, and rice cracker bits instead of bagel bites. Instead of "season salt", I use an organic herb blend called Herby (Frontier Organics, gluten-free). Other than these substitutions, just follow the original chex party mix recipe. It's awesome! And you can serve it at parties and no one's the wiser! I love finding great gluten-free foods, too! But even more, I love finding ones that totally make a lie out of "you poor thing! That's such a restrictive diet! You have to give up so much!" ... Yeah, right! The only things I've given up are diarrhea, gas, bloating, fatigue, nausea, mood swings.... Ha ha ha!!!
  13. lilu

    First Meal At A Restaurant

    I'm proud of you too! Big accomplishment!!!
  14. lilu

    I'm Freaking Out

    I don't have any good advice or wisdom, but I wanted to send you hugs and hope anyway! It's a journey...
  15. lilu

    I Glutened Him!

    I am so sorry this happened, and please don't blame yourself. Part of the benefit of a gluten free home is "knowing" you can eat anything at home safely. This was just an unfortunate set of too many weird situations happening all at once. As far as anything to help, the only thing we've found that provides a little relief is very light eating, lots of peppermint tea and water, and rest. I hope his symptoms pass quickly. Try and get some rest yourself. Sometimes the best thing we can do for others is to take a little care of ourselves.
  16. lilu

    Hello In San Francisco!

    The August/September 2011 issue of Living Without has a travel article about San Francisco w/ restaurant and food recommendations. The recommendations include: Daily Grill in Union Square (noted as the only restaurant to currently hold GFRAP certification (gluten free restaurant awareness program) Farallon - also near Union Square - notes staff is very aware and accommodating to special diet needs. Mariposa Baking Company (the bakery is in Oakland, but has a kiosk in the Ferry Building. This is a dedicated gluten-free bakery. Notes brownies, breads, cinnamon rolls, etc. Slanted Door - modern Vietnamese with a gluten-free menu available Amicis Pizza (Lombard St location) serves gluten-free pizza and gluten-free beer Crepe O Chocolate (near Union Square) - breakfast and lunch -offers gluten-free quiches, omelets, souffles and brownies. Lime Tree Southeast Asian Kitchen in the Sunset District - says they don't have gluten-free menu, but the owners child has multiple food sensitivities and so he is understanding and accommodating, will modify dishes. Author recommends gluten free Singapore glass noodles with coconut curry sauce. Saha on Sutter St, has gluten-free menu - Arabic Fusion cuisine Dosa - in the Museum District - serves gluten-free dosas(crepes) with a variety of fillings The American Grilled Cheese Kitchen - gluten-free bread for sandwiches and special pans to avoid cc. Eagle Pizzeria - gluten free pizza and beer, separate prep area and ovens to avoid cc. Ristorante Bacco - offers gluten-free pastas and homemade gluten-free bread Spin City Launderette and Coffee Bar - offers gluten-free treats. Noe Valley area. Zadin - Vietnamese fusion - offers gluten-free menu. Ajanta - Berkeley/Oakland - extensive gluten-free and dairy free options -Indian cuisine Gather - Berkeley/Oakland - green/organic menu gluten-free menu There's more... But my fingers are cramping! Good eating to you!
  17. I don't know if it's the caffeine or not. I know that COFFEE has a high level of cross-reactivity to gluten antibodies (the antibodies mistake coffee for gluten and you basically can get symptoms of glutening). not everyone's body reacts this way to coffee, just some. I'd bet that's your situation, Sara. Josh - As far as diet Pepsi goes??? I can only say that caffeini is an addictive compound, and that maybe you re-triggered by having some after so long???
  18. Dave_KC, That must be really tough. My first instinct would be to just go Gluten Free at home all together. This way there would be no chance of cc at home. I know toddlers pick up everything, touch everything, and often then taste everything. It can be very challenging to keep her out of the gluten, and away from gluten contaminated surfaces, and keeping all surfaces as clean as they need to be to avoid incidental contact and ingestion. If this is not an option for your family, I have a couple of suggestions... 1) do all of her cooking on one weekend day. Thoroughly clean the kitchen surfaces first to minimize cc (wash it all down, then get a clean rag and give it a second cleaning), then prep all of her meals and treats for the week, and when done, package them in individual servings and freeze. This will help in 2 ways: First, you won't have to do separate cooking during the week, and Second, you won't have to worry about her food getting contaminated during meal prep times. I don't know about your house, but when I've got multiple dishes cooking at once, it's all too easy to let a bit of this get into that. 2) consider storing all gluten containing foods in a locked/ toddler-proofed lower cabinet. If you store things like flour up high, then flour dust can escape when getting it out/putting it back and settle on lower levels, contaminating surfaces that her wandering little hands will likely touch, followed by fingers in mouth. 3) if you are eating gluten foods, be sure to brush your teeth and wash your face and hands before kissing her, snuggling up to read a story, or doing bedtime rituals, etc. Good luck!
  19. Ha ha ha ha ha ha! thank you for give me a great belly laugh! Love it!
  20. lilu

    Can This Happen?

    Even if he is not celiac, his developing symptoms do suggest gluten intolerance. Since this condition has only recently even been recognized, there isn't any information (other than anecdotal) that gluten intolerant people are doing permanent harm to their bodies (like celiacs do if the eat gluten). I wouldn't be surprised, however, if research down the road determines that this is the case. The bottom line, whether you are celiac disease or are otherwise intolerant, is that YOUR BODY DOESN'T LIKE THIS STUFF!!!
  21. Ok, we don't have a mixed house, so I'm going off the cuff here, but how about planning 4-5 different meals you enjoy, cooking them up on a weekend, and then storing them in single servings in the freezer? This would allow you to: 1) have a full meal (I often find if I'm tired and cooking for just me I'll just throw together any old things) 2) eat with the family (cuz you're just heating yours up!) 3) not have to wait 4) not have to cook after work, busy day, etc. Some of the things that we like which freeze well include chili, beef stew, chicken and rice or mashed potatoes, sheppards pie (no pie crust), crustless (or gluten-free crust) quiches. I bet as you go along, you could actually make yourSELF such yummy dinners that your family will be jealous! Especially if you sit at the table and enjoy it right next to them!
  22. And remember, current estimates indicate for every 1 celiac, there are an additional 5-8 (depending on which research and/or opinion you read) non-celiac gluten intolerants! Just because bloodwork comes back negative, doesn't mean this protein isn't a problem for your system. Trust your gut! Literally and figuratively!
  23. Dear KP, I am very happy for you that you don't currently have the disease. May I ask, did you do genetic testing? If you had the genetic tests and know whether or not you carry your father's celiac gene, you can then have a better idea of your future risk and also potential risk for your future children (at least with respect to your contribution! ) For instance, even though I don't have my gene test back yet, we got my husbands results, and he is DQ2/DQ2, the strongest genetic profile for the disease. We have 2 daughters, and all the poor guy had available to give were DQ2s, so that means, independent of my genetic results, I already know that both girls carry at least 1 high risk gene. If you get genetic testing done (assuming you haven't already) you will also find out whether or not you are at increased risk for developing the disease at some point in life, and can make personal lifestyle choices in an informed manner, such as regular screening, etc. We decided after receiving my husband's results to begin living gluten free even though his antibody tests were all normal, because of his elevated risk, his strong family history of gastric cancers, related autoimmune diseases, and his own pretty severe symptoms. He is feeling amazing symptom relief and we figured, better an ounce of prevention now than a pound of cure later. Take care of yourself!
  24. Just did the at home gene test. The instructions were very clear and easy to follow. I used the Prometheus MyCeliacID. I am also interested in looking into GlutenPro's CeliacSure IgA tTg home test. It's already been approved in Canada, advertises results as accurate as lab test, and is currently in FDA approval trials being supervised by Dr. Daniel Leffler at Beth Israel Deaconess Med Ctr in Boston. Sounds pretty promising. The test can be ordered from Canada right now, costs under $100 including shipping, and basically works like a cross between a diabetic blood sugar test and a pg test. You stick your finger with the lancet provided, put a drop of blood on the test area, and wait for the results to develop. Could make awesome holiday gifts for those family members reluctant to seek testing?