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melmak5

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Everything posted by melmak5

  1. Every one is a little different. I am about to celebrate one year gluten free TOMORROW, and there are still things that I should be able to eat, but that my body doesn't really like: dairy, and some gluten-free whole grains, and certain raw veggies. Experiments with food at home is cool, but yeah, not on a road trip. "rice noodles" is sometimes easier...
  2. Well first and foremost, welcome! And yay to finally know what is going on with your body! How many days have you been on the gluten free diet? I would say while you are still getting your gluten-free bearings, its not a bad idea to eat some simple foods that you know your body can tolerate. If you are worried about needing frequent restroom breaks...
  3. I am not sure I understand your concern... I am sure some of the singing won't be great, but hopefully it won't make you ill. If you know where the venue is, you can contact the facility ahead of time and ask about their outside food policy. (Obviously explain your situation and why you cannot eat their food.) If they are agreeable, I would eat before...
  4. I live full-time with two roommates. One "gets it" one doesn't. I have realized that as much as I have tried to do to educate them, it unfortunately, is my body/diease/problem. There are always crumbs on the counter. This is something I have to deal with. (And both of them have seen me at my worst... accidental glutening lead me to be in the ER for...
  5. It usually takes a few weeks to "feel better" or notice some changes in your body and stools. In addition to your tests, it might be a good idea to make sure the pre-natal vitamin(s) you are taking are gluten free. (If you are in the US most vitamin starch binders are corn... but it doesn't hurt to check. Many people start craving gluten after starting...
  6. I was diagnosed a year ago this coming Saturday. I have not had a "normal" or "regular" period in over a year. I am gluten free and now carry around FHP all the time. I stopped trying to explain this to doctors because they kept trying to have me go on some form of the pill or the ring... which I did for a while (my gi was convinced that it wasn't...
  7. I would request a copy of all her labs and tests and find a new doctor. In the mean time, if she is open to it, have her try going gluten-free while you are searching for a new GI. If that is not an option, perhaps you could try to educate this current GI on what celiac disease IS. There are a few New England Journal of Medicine articles that not only...
  8. I agree with what others have posted. I think its easy to be embarassed or not want to admit how much gluten does affect us. Its also hard to communicate this to others. The "but you don't LOOK sick" response is common. I think it would make sense to reach out to your boss and perhaps to HR and set up a meeting. Explain that you understand that you...
  9. Bostonceliac - I go to the one in Central Square, Cambridge. I had a kickass cupcake 3 weekends ago. I think the texture was weird, but the flavor was pretty good. Honestly, if you cover ANYTHING in that much buttercream, it cannot be too bad
  10. I have a very good friend, who doesn't post here, but who is vegetarian and has been gluten free for 5 years. It is not always easy, but it is very possible to be healthy in all aspects of your eating. If you tolerate dairy (not all persons do when they are initially diagnosed do to the damage to the villi in the small intestine making it harder to...
  11. It might be something else in the cereal. I discovered, the hard way, that my body does not like quinoa (which is in Mesa Sunrise). If I have more than a few teaspoons of the stuff its is like WWIII and then a mass exodus. Or maybe its the chips? Maybe cut both out till you are feeling better and try a small amount of one or the other. Good luck...
  12. You could try adding in foods that naturally have fat in them, in VERY small quantities. Maybe a little shredded coconut, or a slice of avocado. If you can tolerate nuts, maybe a few of those a day. Or eat a few olives. I would avoid animal fats and anything fried for a while, because they are harder to digest. More than anything I would try a...
  13. While I was delighted to see an article about the subject, I found that their lack of discussion of "cost" and "access" a major problem. In both the cases of allergies and intolerances one can only get better/heal and remain safe if they have the access to the knowledge about what things are called/labeled and the time to make all of these phone calls...
  14. cupid - I think it depends on the context/situation. I tend to avoid starting with the words "celiac disease" because the word disease usually implies its contagious and people recoil. If food is involved, I make it pretty clear that sharing is not allowed unless I put some of my food on their plate with my Gluten-free fork, etc. I try to keep it as...
  15. I am not sure if it is possible, but is there anyone in your area that is an adult male with celiac disease? Maybe you could meet on at a local support group? Having a positive roll model cannot hurt. Someone who isn't really an authority figure but can say all of the things everyone here is saying... "don't eat gluten and you will put on weight/grow...
  16. I post on another message board about local music/art/shows, etc. and a few times I have mentioned dietary stuff... someone actually posted a thread entitled "HEY CELIAC PEOPLE, I AM ONE OF YOU!" and 4 of us were "outted" and suggested places to go and gluten-free options in the area as well as products, etc. Anyhoo... cut the part where someone a few...
  17. melmak5

    ARCHIVED Refractory Sprue

    I went through a very similar situation. Diagnosed, stopped eating gluten, felt better then got worse... lots of D, 7-10x a day. I got little help from any medical professional (I went through 4 GIs) For me, it was soy and dairy. Cutting them out has made a huge difference. (I am still waiting for the holy grail of solid poop day... somewhere in...
  18. I would highly recommend the 2007 New England Journal of Medicine article by Dr. Green. Its medical-term heavy, but really useful.
  19. I actually wrote one of the response, but they misspelled my name. I realize the very nature of newspapers involve editors making up headlines on the fly... but no one would call someone who was carbohydrate sensitive, following South Beach and label the article: "Diary of a Diabetic" I realize it is a technicality, but I think till there is more awareness...
  20. This Sunday Globe's Ed/Op had three responses to this article.
  21. Did anyone else have a problem with the fact that it was entitled "Diary of a Celiac" and the woman admittedly does not have Celiac Disease, and talks about "going off the diet" for the "perfect onion ring" or "bite of cake"?!?
  22. My story... I guess I am "lucky" in a sense because I become violently ill when I get gluten in my system. The first time it happened post-going gluten free, I was in the ER because of rectal bleeding and sever pain. (I had to explain what "celiac disease" was to the ER attending, while having a rectal exam. Yeah, that was a treat.) Last April I...
  23. 1. Welcome! This is, in fact, a really great place for support. 2. How were you diagnosed as a child? (blood work, endoscopy?) 3. It sounds like you are aware of the basics... even if you don't "feel immediately sick" it doesn't mean you aren't harming your body. 4. Going gluten free (COMPLETELY gluten free) for a few months may make a believer...
  24. I second the food log. Its how I found out I couldn't tolerate any grains or raw fruits. (I have been lucky and have been able to add some of them back in smaller quantities.)
  25. blueeyedmanda - hypothetically lucky... getting sick from moldy chicken, not as bad as glutened, but not really awesome either I am really torn on whether to give them another shot or not.
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