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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Andrea_P

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  1. They do not have a Facebook page that I cannot find
  2. I tried the form on their website (http://alex5krage.org/contact-us/) but when I hit the submit button it tells me it is not working right now. I think the captcha thing is messed up. I would really like to get in touch with them but couldn't find any other way to do it. I was just hoping that someone on here would know someone.
  3. I tried using the contact form on the Race website but it doesn't appear to work. Hoping someone might see this here.... I just heard about your race from the Chicago Tribune and am extremely sad to find out that we are gone this weekend and will not be able to attend. My daughter who is 9, was diagnosed about a year ago and is so sad and feels isolated because she is the only one at her school who has this decease. She would have loved to see and take part in this event to see she isn't alone :-( I have reached out to many "clubs/organizations" but it seems most have dissolved. I would love for her to be a part of something like this. My question is: are you planning on making this an annual thing? If so, can I get on a mailing list to be notified for next year? Also, if you even need volunteers I would love to help out. I actually sit on another walk committee for the last 10 years. I would love to help out anyway I can. I also work in Marketing and Social media so I have other skills too :-) Just let me know if you plan to have further events and if you need help organizing. BTW, great job Alex for taking an interest in your future! We need more people like you :-)
  4. I always check the Epi-Pen site before filling a prescription Avi-Q is another one that does free or 0$ copay too. He is only on the environmental for the drops (gets one drop under tongue 3x a day for the last 2 years). I really do wish the food ones would work and I am really hoping they figure them out soon since my son's nut allergy is pretty extreme. Since this is not approved by the FDA I do have to pay out of pocket for all of it. Here is hoping for a promising future and some answers. One other question: do you get your son tested for vitamin deficiencies?
  5. We have so many epi-pens it is insane. My daughter is also allergic to bee stings and manages to get stung every summer! Thank god we have never had to use any yet. As for my son's allergy testing: he sees an ENT (the most popular one in our area). I assure you he is license and I trust him more than any of the other doctors - he is anything buy holistic as he did surgery on both my kids (tonsils and tubes). My son has a worse medical history than my daughter but that is a whole other forum :-) Anyway he gets testing every 3 months so they can make a new formula with new levels. It is very popular oversees but the states haven't been so quick to adopt it. He is two years in and can finally live without daily allergy medicine and one year hospital free so I think it is working well. She has a probiotic in her mulit-vitamin and we have also tried the flora one that you mix with a liquid - she hates that one. I guess we will just keep moving forward and hope something changes for the better. I just having to deal with a disease that you cannot get instant feedback for. I am horrible at waiting so long to see if something is working.
  6. I know people have concerns with the acuracies of EVA screening and you are correct - these were not backed by blood RAST testing or scratch testing for her. I personally really believe in this form of testing and can confirm my own results through EVA and blood test that I went through. I am allergic to every nut (proven through blood and scratch testing) except for almonds and without saying a word the EVA test said the same thing so I tend to believe it. My son also has allergy testing (injection testing) every three months for immune drops he is currently taking - the EVA test also came back with the same results. Allergies/intolerances aren't my big issue. I really am wondering if anyone has had problems with regulating sugar levels. I know that she has a problem with sugar. About 2-3 hours after eating something high in sugar she will turn white and be almost lathargic. I am curious if this is due to damage of her intestines or something else that is going on. I don't want anyone to think I put her on a restrictive calorie diet. Believe me she gets plenty of choices but choices but doesn't want any of it becuase it is all new. She isn't a child that likes change. She is gaining weight so I know she is getting plenty of calories, we just cannot figure out the cause of the sugar drops or stomach aches. Maybe I am looking for an answer that just isn't there. I am tired of the fight and doctors thinking I am crazy. I just want to believe there is something better for her.
  7. I should have specified that she is partial Paleo with rice and black beans. She is not a meat eater (just doesn't like it much unless it is in a form of a nugget) so I added black beans and rice back in awhile back. As for her numbers, that is a hard one. Apparently her Pedictrician ran a different test so we could not compaire it to the last one (34.1 IgA TTG test). The gastro just said that was higher than he wanted or expected to see. She is an EXTREMELY picky eater so it is really hard for me to get her to try new things. I have hidden protein powders and other stuff in smoothies but seeing as we live in Chicago this winter has been brutal and the smoothies haven't been happening. Now that the weather is better we will go back to those a few times a week. Also once school is out I will be able to go back to doing "hot" lunches which opens up a lot more possiblities instead of veggies and lunchmeat - she hates gluten-free breads and I have tried many including different wraps. If you are asking what allergies she is dealing with it would be dairy for sure. She was pulled off dairy about 9 months ago. She had an EAV screening done which has helped us navigate a little. I was surprised on how acurate it was. All the things I know through conventional tests came back postive for me on the screening too - I have A LOT of food allergies but not Celiac. I truely was amazed at the test and how easy it was. Basically all dairy is out (goat, cow, feta...) a handful of fruits, aspartame and all natural sugar plus food dyes according to the screening. We also give a good probiotic everyday plus a multivitamin. It was also suggested she take Vitamin D. You need a flow chart to follow all the food allergies in our house and that is a big part of my frustration - finding something that everyone can and will eat... without complaining. I do know that she has made some mistakes with foods and ate something on accident but typically she is an very honest kid who does listen and doesn't cheat. Now that you mentioned pasta, I might have to reintroduce it, we got away from that a little when my son and I found out we have a problem with corn - I really didn't like the rice pasta all that much. I might have gone off the healthy deep end a little too much with her. I am trying to make a change in our families eating habits and move to more "fresh" foods but might have to give a little for her. My fear is she latches onto that stuff and then gives up on the healthy food. She will just not eat and lose weight if she doesn't like the food choices in the house. I am a little strick in that way. I always say I won't be a short order cook but maybe I will bend the rules a little. It is just frustrating. I feel like I take one step forward and then five back. I am having a hard time finding a family balance and a new normal. Her biggest problem now is she will eat and then turned flush white with red circles under her eyes. I am told that is a sugar crash that is happening. Sometimes she will complain of a stomach and others times say nothing at all. I think she stop telling me so I wouldn't take foods away that she likes. I just feel bad that there is nothing I can do to help her out.
  8. I will try and make this as short as possible. After 2 years and three peditrician's we finally got the diagnoises of Celiac through blood and biopsy in May of last year. Since there are so many allergies in the house (my son and I have asthma and many alleriges) we decided to make the entire house gluten-free. Anyway, my daughter (8) did great the first couple of months and stopped complaining of stomach aches but the last 5-6 months she started complaining again. Now I know it most likely is not coming from food (we are mainely Paleo/Whole30 in our house with minimal processed food) I cannot for the life of me figure out what is going on. Back in Sep we did a follow-up with her gastro doctor of Children's hospital in Chicago and was told her numbers are not going down. I asked what more I can do for her and her stomach aches and was told since she is gaining weight (she was always small) to just not worry about it right now. As a monther I cannot just shrug off news like this knowing what kind of damage her body is getting when it is still in a "fight" mode. I left that doctor and took her to a naturalpath doctor instead. We found out all kinds of information with that doctor. They did a food sensativity test (cannot remember the name of the test) and she came back sensative to: dairy, soy, popcorn and sugar +plus about 100 other things. I was told her body is acting like a diabetic and cannot process the sugar. It was suggested that anytime she eats sugar, even natural sugar like honey and maple syrup, that she should eat protein with it. Well that worked for a month or two and now we are back to stomach aches plus headaches all the time. I have scaled back completely on sugar (less than 8gm per snack/meal) and now she still has problems. I am at the end of my rope with this and feel I have nowhere to turn for help for her. She has already given up so much I am not sure what else I can pull from her diet. I already have a fear of leaky gut syndrome since her diet is so strick/small already. To make matters worse she started doing CrossFit (my husband and I both CrossFit). This has made her extremely hunger all the time but I cannot figure out what to feed her to keep up with what she is burning (add in ADHD - a child that NEVERS sits or stops moving). Has anyone had issues with processing sugar? Was there something you found that helped out? Enzymes, protein shakes... anything?? Signed, A desperate mother ;-(