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veruca

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About veruca

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  1. I'm so sorry to hear about your struggle. Constipation and stress are a frustrating combination. I went through some struggles with the constipation diarrhea cycle and I believe laxatives execerbated the situation. I am sure you are eating a clean diet, but perhaps you could focus on keeping it as near to natural as possible and avoid processed foods. Have you tried prunes and senna tea? Stress messes with my bowel movements and I try to keep a routine. I eat breakfast, wait and then go. If this doesn't happen my day is ruined.
  2. Thanks so much for all your responses. Many of my restaurant experiences have been extremely positive. I posted this after visiting a restaurant that charged me $4 extra for gluten-free bread and another $5 just to make my salad gluten free. I had just picked up some things from a gluten free speciality store before dinner and I think it all just added up-literally. I am lucky to have my health under control. I am also lucky to be able to eat out no matter what the price. I love having a gluten-free specialty store as well. I see a massive difference when asking for gluten free food if I explain I have celiacs. This is not my choice and it is not easy but I appreciate the waitstaff helping me out. Every single time we inform the restaurant we help out our whole community. Thank you all again.
  3. I'm so sorry for your difficult experience first off all. Unfortunately, hair can only be used for DNA which is not conclusive. Did they use a butterfly needle? I have bad veins and it helps to insist on a phlebotomist and they try my hands as well. Nurses can get blood from babies so they shoukd be able to help you. Good Luck!
  4. try some gopicnic gluten free packs. You can get them at a decent price from amazon. They are non-perishable snack packs at around 400 calories. I always take them with me when I travel. Peanut butter and rice cakes are also great.
  5. You are the best roomie ever!! My boyfriend and I keep our apartment gluten free. He does not have celiacs, but he is really supportive. When I met with the dietician after my diagnosis one year ago she encouraged him to keep eating gluten outside of our place. She felt it may be possible to develop a gluten sensitivity. My boyfriend eats pizza once a week and maybe a few other things at lunchtime, but he has cut back drastically. He says he feels better now too!
  6. Neville Bamji at New York Gastroenterology Associates http://www.gastroenterologistnewyork.com/md-bamji-neville-physicians-staff-new-york-gastroenterology.php He is my doctor and I have a great experience with him. He is supportive and knowledgeable. I've heard stories about people being diagnosed and left on their own. Dr. Bamji sets you up for success and follows up. He is also easy to get reach by phone and email.
  7. My parents and sister were tested and no one has it. I really thought my Mom had it. She has so many health problems that I almost wanted her to have it so she could start to feel better. No dice though. Blood tests were normal and so was her endo. I have a cousin with fibromyalgia who I've urged sooo many times to be tested. Some people are just too overwhelmed with the idea of going gluten-free. Maybe I wouldn't have sought out a GI to figure out my issues if I had thought for a second that I could have celiacs.
  8. I have an iPhone and I frequently use the following apps 1) is that Gluten Free? and 2) Find me Gluten Free. The first one is a repository of product information. I use it constantly when I'm shopping to ascertain whether or not specific brands are safe. It is really helpful and has the info about specific flavors as well. I use Find me gluten free when I travel and even around my own city to locate gluten-free restaurants. Last summer I was in upstate NY and found some diner style place with a bakery that was totally gluten free. I had chicken fingers and mozzarella sticks. I didn't even know I missed those!
  9. I'm trying to eat out less, but when I do go out to eat I go to places that cater to gluten free people. Many restaurants now are charging extra for gluten free. These charges fall into 3 categories 1) charging for gluten free bread or pasta...some sort of special item 2) the cost of preparing the gluten free food separately and finally 3) the price of a substitution. I have celiacs and gluten free is not a choice. I was wondering if this was against the Americans with Disabilities Act. I'm usually so excited to eat out that I don't mind paying. Other times, I think I should remind them of the price of a loaf of gluten free bread. I've actually argued before on the charge for substitution because this is often to get vegetables instead of fries which we CAN'T eat. Does anyone know if this falls under the ADA?
  10. Thanks so much for the helpful words, suggestions and encouragement. I have a really great GI and when he got the results he called right away. I'm going to meet with him next week, but his advice was sort of the same as above. He felt that my numbers were okay and that we will go over in detail where I may be picking up the low level exposure. When I was initially diagnosed I was so great about advocating for myself and never eating anything unless I had package or internet documentation that it was gluten-free. As time went by I think I became lax and just made sure gluten was not listed in the ingredients. At restaurants, I wasn't as vocal about expressing my needs. I'm going to try and eat out only once or twice a week and only go to restaurants that are set up to be gluten free for real. I'm going to check all the products that I use regularly for gluten as well. Thanks.
  11. I was diagnosed last year with celiac disease. These are my results from one year ago: Test Results: IgG DGP IgG 143.0 EU/ml IgA DGP IgA 65 IgA ELISA TTG IgA >128.0 U/ml EMA IgA positve total IgA 83 mg/dl I just got results from Monday: EMA IgA positive tTG IgA 9 which is a weak positive IgA serum 72 I feel like I've done so much to change my eating habits in the past year and this is so frustrating. I just found out so I'm feeling pretty helpless. I cook most of my own foods, but I live in NYC so I also eat out a few times per week. I only eat at "gluten-free" places or I just have salads. I'm thinking that "gluten-free" isn't really gluten free enough for me and that I need to be more insistent about keeping my food safe. I contacted the dietician today whom I met with soon after my diagnosis to see if she has any ideas. Of course I also contacted my GI Dr. to follow up. My plan is to cut out everything and try to schedule another blood test in 3 months. I'm sure there are others who've had a similar experience and I was hoping for advice on dealing with all of it.
  12. Are you too far to come into NYC?
  13. I have been to a few different support group, round table and meetup events. I think it depends on the situation and goal of the program. If it's a gluten-free dinner then the goal is to eat some gluten-free safe food and feel normal. If it's a round table discussion you are looking for professional advice and the support group is there for support (not just a clever name). I was recently diagnosed so personally I go to the meet-ups to get advice from others that have dealt with celiac disease for several years. They recommend the best brownie mixes and know the safe restaurants. I have to admit that I have been put off by some of the self-diagnosed people. I wish they would identify themselves (and many do) as gluten-free but not celiac disease. This disease is no joke and you need proper medical care and follow up. There are many health issues associated with gluten that are not celiac disease so self-diagnosing is not a good idea. Self-diagnosing your children is even worse. It's a blood test and a biopsy and it's worth it. Obviously there are exceptions, but now that this is becoming a somewhat trendy diet it is more dangerous. In blind studies many people who do NOT have celiac disease report health benefits of abstaining from gluten and this does not mean they have celiac disease. It is not recommended to cut something completely out of your diet unless medically necessary. Gluten containing breads and cereals are fortified with vitamins and minerals and if you have celiac disease it's something else to deal with, but do not put yourself through it if you don't absolutely need to do it.
  14. You should probably just wait it out for the blood test. There are many symptoms that seem like Celiac, but are not in fact Celiac. Once you have the test results you may discover that you do have elevated antibodies and celiac disease can be confirmed by a biopsy. If you do not have celiac disease, it is possible that you have a gluten allergy or perhaps would just benefit from a gluten free diet. There are many people that adopt a gluten free diet because they feel better but do not necessarily have celiac disease. It is important though if you do have celiac disease to be properly diagnosed so your family can be tested and you receive proper treatment.
  15. I am so sorry to hear that you are going through this. I know you probably hear this all the time, but many people on here know what it's like to struggle with illness and questions. I would go to your GI specialist and discuss what possible deficiencies could be the root of your problem. Blood tests could bring you closer to an answer and something as simple as a vitamin could help you out. Good luck