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About knittygirl1014

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  1. Good luck on the interviews. I would say that confidence will make more of an impression than what you eat.

    I agree. I've only been gluten free for a year though and I'm still getting used to how people react. Some people are curious, some are put out, some are kind of rude, and some are overly accommodating, which can be awkward. I guess I will just ask where they are considering going so I can phone ahead and check it out.

  2. I could swear I saw a thread on this before, but I can't find it. If anyone can point me in the right direction...

    I have a full day interview with several departments at a Biotech company coming up soon. The coordinator told me she wants to take me out to lunch that day. How do I bring up my dietary needs in a way that doesn't sound like I'm a primadonna? I'm sure they will be more understanding than most since their work is biomolecular assays and stuff... I'm just not sure the best way (or time) to bring it up. It's in another city but I am familiar with it since I went to college there.


  3. I think this is really interesting to hear everyone's different viewpoint about it. Just illustrates the difficulty in getting a bill that everyone will be happy with (OK, that's impossible). I think doctors are currently encouraged to both run more and fewer tests now, depending on where the pressure is coming from. Yes, insurance sometimes deny things randomly, but because of the current system, the more procedures and the more patients doctors do, the more they get paid. Also, malpractice suits are really common, and they want to avoid those. Trust me, I used to work at a doctor's office and I have seen it.

    As for there not being a paper trail, the only way that is possible is if you gave them a fake name when you went for your procedures. I suppose it's possible that those records won't make it to another doctor or to the insurance company, but if you don't tell them and they find out later, you can be sued for fraud.

    I absolutely agree that I don't want my taxes going sky high, and yes the money has to come from somewhere. I just don't want the cost-saving to go to the opposite extreme and have doctors be penalized for running too many tests. Because then the patient is penalized too. I'm probably being overly worried, but it's just hard to find information about what's going on in "reform" right now, and I'm so busy!

  4. I just wanted to mention that my gluten intolerance was triggered by a particularly bad case of the seasonal flu. I know my immune system is not back to its former glory, so I'll be getting the shot if it ever becomes available. I mean, really, if you're already feeling tired and achy because of gluten, do you really want to feel even worse? I don't know if you'd be more susceptible in the first place, but who needs more symptoms? I've also heard that the vaccine is already paid for with your tax dollars and will be free to get (plus a possible administrative fee from your doctor's office).

  5. I've seen a lot of doctors in the last few years, and I think their attitude is the most important indicator of how good of a doctor they are! If they are not willing to listen to you and treat you like a person, imagine what they will do in the future when you have more questions or something else go wrong. The same thing!

    I was actually seeing a rheumatologist who gave me the option of getting the biopsy or just going gluten free. But the most important thing was that she was supportive and made it MY decision. (I didn't get the biopsy) My primary doctor is also very supportive, saying things like "well if you feel better, that's what's important!" And she didn't harass me about my weight gain either, when most doctors would. She knew that I was absorbing food again and it was pretty normal. I'm kind of glad I don't have a diagnosis on paper now, since my employment situation is uncertain and I may have to purchase insurance in the future. I don't want to get denied for a pre-existing condition.

    There are plenty of doctors out there that are willing to work with you without their "gold standard."

  6. Well, let me clarify. I'm not afraid of socialized medicine, or a government run program. I got medicaid benefits for a short time when I was in college and it was great. I also had an HMO one time that I really liked, so that's not really the issue. Even if I stick with the insurance company I have now, new (possible) laws that would encourage doctors to run FEWER tests could still get passed. I guess that is my concern- how do they plan to cut waste from a system they don't control? The government-run option is just that, an option. What about people who stay with private insurance? It seems like the private system is exactly what they are planning to target in terms of waste. With all due respect to Nancym, I don't want to have to turn to a private company to run my own tests.

    I'm also not contesting the fact that there are a ton of unnecessary tests being done- especially to avoid malpractice suits- but in the future WHO is going to decide what is unnecessary? I'd like to say I hope it's left up to the medical professionals and not someone sitting behind a desk doing pre-approvals, but I don't have a whole lot of confidence in that either! Especially with some of the doctors I've seen...

    It would be great to hear from some international people who have government health care too!

  7. Wow, so many different stories! Glad someone mentioned drinking lots of water. I am so bad at this and have been trying to stay hydrated lately. Update for me- the last 4 months have been a little up and down. My joints still feel achy from time to time, and I've had to cut back on the gym-going, but I'm sure I'll work back up to it. I get really hungry still sometimes...so annoying.

    I have been able to add back dairy, which is exciting! Let's hope I don't overdo it now. It is great to get to that first day when you look in the mirror and think "I don't look sick!" though!

  8. 10 months ago I could have written that exact same post! I promise you will find new favorite foods. Try experimenting with Indian and Thai cuisine, they are very flavorful and a lot of stuff is gluten free, and you can make them yourself! Also keep in mind that the depression can be part of the physical reaction, so tell yourself it is normal and don't blame yourself! I had to give up dairy for 10 months and it was sooo hard and I was really upset about it. I was able to add it back last week though. As for gaining weight, I think for some of us it is unavoidable. I gained 25 lbs and it really sucks, but it will start to turn around soon I hope. Hang in there and things will get better!

  9. It took me 4 months before I felt any better- I actually felt worse for the first 2 months- and I had to completely eliminate dairy and soy as well before the bowel problems went away. It's been 10 months and I just was able to add dairy back this week. Still off soy. I used to get that metallic taste all the time. Not sure exactly what caused it, but it is gone now. I agree, take lots of vitamins, be really careful about cc, and be patient! There are lots of great new foods to explore and enjoy, but I think it's really important just to keep it simple for awhile.

  10. Hi everyone,

    I've been hearing a lot lately about how "cutting waste" from the health care system in the US is the way they are planning on paying for health care reform. Now, I'm all for reform, as I *have* insurance and still have racked up thousands of dollars in debt over the last couple of years trying to get the proper diagnosis. However, a lot of the chatter lately (news, pundits, etc) has been about how doctors run soooo many unnecessary tests. Well, if I had not pressured my doctors into "unnecessary" tests, I would still be very sick. The attitude that the doctor knows all and is in 100% control of your testing is dangerous, because they are not all as educated as we would hope. What about all the drugs that I was prescribed, paid for, and took unnecessarily because the proper tests were not done to begin with?

    It is really unsettling to me that we could potentially be facing a system where we can't get the care we need simply because someone else thinks that the proper care is "wasteful." I still don't have an actual diagnosis even though I have been gluten free for 10 months and this makes me worry a little bit- if I were ever to be hospitalized, I hear getting gluten free food is very difficult, and I imagine it would be even harder without a "real" diagnosis.

    Anyone else have opinions on this?

  11. Hi Maceroni,

    I had terrible problems with constipation before I went gluten free. What you said about food sitting in your stomach makes me think you should do a little research on gastroparesis. Basically this is when food goes really slowly through your digestive system. It got so bad for me I was burping rotten egg taste and vomiting a lot. It was REALLY bad. I'm glad it hasn't gotten to that point for you yet. The only thing that made it better was to go gluten free. Although I then did experience a little diarrhea before normalizing. Now I take fiber and probiotics and they seem to help the recovery process.

    good luck!

  12. Anyone in Rochester, Syracuse or I think NYC... Dinosaur BBQ has lots of gluten free items! I went to the one in Syracuse a few weeks ago and my waitress said she eats gluten, dairy and soy free just like me! It was seriously the most thrilling thing you can hear in a restaurant, as I'm sure you know. She helped me pick out a really delicious meal and I had no reaction later. I had the pork and brisket platter with a salad and a rice and beans side that was really way more delicious than it sounds. You should try it!

  13. You can dip your veggies in hummus, or if you're weird like me, peanut butter.

    For an on-the-go breakfast, I found a recipe for healthy oatmeal cookies. You'd have to get Bob's Red Mill gluten free oats though. The recipe uses mashed up bananas and oil instead of lots of butter, and I used Splenda instead of sugar.

    I think the recipe was:

    1 c oatmeal

    1/2 c sugar

    2 mashed bananas

    1/4 c vegetable oil

    cinnamon/nutmeg to taste

    bake for 12 min 350

    I may have added a little rice milk as well if it was too dry. I got the recipe from cooks.com I believe but I can't find it again. You can add in some gluten free flour if you don't want them to be so chewy.

    Also, instead of grits Bob's Red Mill has Mighty Tasty Gluten Free Cereal. And it is mighty tasty.

  14. Even if curing candida overgrowth were a cure for celiac disease, the info he gave you doesn't make any sense. Candida is a yeast, and yeast feed on sugars. Starches and carbohydrates break down into various kinds of sugars. Him telling you to avoid chicken and turkey but to eat brown rice is absolutely absurd. Although brown rice has less starch than white rice, it would still feed the yeast.

    If you want symptom relief, the best thing to do is avoid *gluten* and if that doesn't work, try eliminating other dietary proteins which are scientifically accepted to cause a reaction in celiacs (at least while you're still healing). These would be soy, casein (dairy) and eggs. I know some people here have trouble with some other things too, like oats.

    Although, if you're doing it for your husband, and it will help him get on board with dealing with your disease, there may be a benefit there. As long as you eat plenty of veggies as well, it shouldnt hurt to try it for a short time.

  15. I know what you are going through. I was in therapy and on a bunch of different medications for a long time before going gluten-free, none of which really helped all that much. It did seem to get a little bit worse after I went gluten free. I was starting to think I might be bipolar or something. I don't know if that's the detox or what. But after I cut out dairy, soy and eggs, I felt much better (physically too). I know it's really hard and puts a ton of strain on your relationships but if you are really strict about your diet I think it will get better. It took me about 4 or 5 months.

  16. It took me about 4 or 5 months to stop feeling ravenous all the time (even right after eating!) I think what helped for me was to add more soluble fiber and probiotics to my diet. If you can find psyllium fiber, you can mix it right into a glass of juice or some applesauce. It definitely helps you feel fuller. If you don't like the texture of that, try inulin.

    I am one of those people who also had to give up dairy, soy and eggs. I find that when I get glutened or eat one of these other foods, the hunger comes back for a little while.

  17. I am currently loving these date balls I recently rediscovered. My mom used to make something like them for our hiking trips.

    I don't have exact measurements, I kind of just throw everything together.

    Dried dates

    almonds (or your favorite nut)

    rice chex (I have also used Mesa Sunrise cereal)


    flax seeds, Enjoy Life chocolate chips, or dried berries

    powdered gluten free oats, or one of the other flours you have on hand

    I throw them in the food processor (it helps to do the nuts first) and squish them into balls. Roll them in the oat flour so they won't be too sticky when you pick them up the next day. Refrigerate so they hold their shape.

    These are kind of high in calories, but they are an excellent treat. For a lower calorie snack, I usually keep a piece of fruit around.

    I also have trouble with breakfasts since I am always on the go and don't eat eggs or dairy. I found these Jones natural breakfast sausages that are gluten free and have no preservatives. They only take 2 minutes in the microwave and then I am out the door!

  18. Everyone has made a lot of good suggestions, but I just wanted to add some products that I like that are safe.

    I am currently off eggs, dairy, soy and gluten, so I can relate to your troubles. I do eat meat though. When I was still eating all these things I used to get those stabbing pains in my chest too. My doctor freaked out and made me get an EKG, but it was normal. When I cut out all those things, the pains stopped. If you were drinking Rice Dream and getting glutened before, that could be the problem. You might want to check all your condiments and stuff for hidden gluten.

    If you are concerned about getting enough protein, health food stores sell those big jars of protein that you stir into a shake. I got some that is made from rice protein and it's processed without chemicals. I can't remember the name but it comes in a white plastic jar with a brown lid (it's chocolate flavor). I mix this with Westsoy rice milk in the morning and have a piece of fruit with it.n Also keep in mind that most Americans eat twice as much protein as is really necessary. I started logging my food in a program that tracks the nutrients, and it's not really that hard to get enough protein to satisfy your body's requirements. Just keep in mind it should be complete protein, i.e. a good balance of amino acids.

    I don't use margarine because it usually has soy. Instead I got Spectrum shortening which is just palm oil, and it has no trans fat. Coconut oil was a good suggestion too, but I don't like the texture as much. Avocadoes are also a great way to add some texture and fat to vegetables or a meal. Olive oil also.

    As for potatoes, the taro suggestion was good, but if you just need something carby and delicious, consider plantains as well. They are like a banana, but more starchy. I'm not sure if you'd be able to get them fresh all the time, but there are plantain chips available.

    If you cook at all, making bread with bean flours can be helpful, although the taste is stronger than other gluten free flours. If you look in Indian food stores, they usually have a variety of flours you can use, like millet, rice and bean flours. It might be worthwhile to learn an easy recipe for flatbread. Usually it's just flour, oil and water and a little salt. I know it's hard to be able to just grab something and go when you have so many dietary restrictions, so I always keep something like that around.

    OK just another random tip... I discovered a lot of great websites about the raw food diet. Although I'm not anywhere near that extreme, it helped me discover a lot of interesting and delicous foods that I could add to my diet so I wouldn't feel deprived while cutting out all those other things.

    I hope you feel better soon!

  19. My take on this is that successful results that are easy to deploy are probably decades away. But think about it... if it became something that was part of all those childhood vaccines they give you, we never would have had to go through all the pain and trouble of gluten intolerance. It probably wouldn't help people who have already suffered through it and developed the antibodies.

    I totally agree that eating healthier is something to be highly valued, as I have recently changed many things in my diet and seen the improvement. But I have a 10 year old brother who I think is starting to show signs of gluten intolerance. If he could avoid all the horrible things that have gone wrong in my life because of gluten (long before I knew about it or how to avoid it), I think that would make it worthwhile. Then he could spend his teenage and college years really learning how to be healthy, going to the gym, out with friends, learning good nutrition, etc, instead of how I spend mine, which was depressed, unhealthy, isolated. Maybe it is false hope, but I still hope there is a cure or treatment someday.

  20. Hello everyone,

    This is my first post although I have been lurking about for several months. All the information and support here has gotten me through a very tough time and I don't know what I would have done without it! So I thought it would be a good idea to post my "timeline" and story now that I am feeling better so other people can take some hope away from it. If you think it is a good idea, post yours too! I think it would be so helpful to have a short summary of what different types of people go through so you can compare your recovery to those in a similar situation. For example, if you are young and haven't had the disease that long, you might be more likely to recover faster than someone who has been undiagnosed for 40 years. Anyway, here goes...

    Age: 25

    Gender: Female

    Length of feeling sick/having symptoms: 2 years

    # of doctors consulted: Lost count, about 5 or 6

    Officially diagnosed: No

    Additional intolerances: Dairy, Soy, Egg

    Time since going gluten-free: 5 months

    Weight lost or gained before diagnosis: 25 lbs lost

    Month 1:

    Felt worse before feeling better! Very, very hard emotionally to give up gluten. More cravings than you could imagine. Very exhausted and sore. Difficult to even walk the dog.

    Month 2: Started discovering new recipes, gluten free treats. Also started gaining weight! (Duh!)

    Month 3: Intestines still unhappy. Starting to get a little less achey and sore. Emotionally feeling very unstable still (depressed, anxious). Glutened a couple of times, missed some work.

    Month 4: Cut out soy, dairy and eggs. Very frustrating at first. Towards the end of the month, starting to feel good.

    Month 5: Amazing! My body is discovering a rhythm and routine again! Joined a gym at the end of the month. I had gained over 20 lbs back and I am not happy about it!! There was a time I thought I would never feel better when I was diagnosed with fibromyalgia... I can't believe the difference and I am so grateful every day for my newfound health. I am off all meds except birth control... no more narcotics for pain or antidepressants or anything.

    Unexpected benefits of going gluten free: skin totally clear, seasonal allergies gone, dark circles under eyes gone, hair growing back thicker, anxiety gone, insomnia gone (yay sleep!) and morning sleepiness gone

    I want anyone who is feeling depressed and hopeless to know that you can feel better! I was probably the worst offender with feeling sorry for myself and being impatient about feeling "normal" again. I don't want to give anyone false hope or anything if you have other circumstances, but I didn't start feeling better until I took dairy, eggs and soy out of my diet. I still hold out hope that I will be able to add them back eventually, but for now having energy again is 100% worth it. I know it is hard to get a picture of how far I have come because I wasn't posting when I was feeling poorly (not enough energy to do it!) but believe me, I am amazed at the progress.

    Now, my favorite treats are: strawberries, homemade "carrot cake" muffins (no frosting), trail mix and date balls (dates, rice chex, honey, PB, flax seeds and powdered gluten free oats), carob fudge