• Announcements

    • admin

      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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

1 Neutral

About blmoreschi

  • Rank
    Community Member
  1. We are 2+ years post diagnosis, and I rarely go on this forum anymore because "we've got this". But I wanted to share that I noticed the articles about the non-responsiveness of kids with Celiac to the Hep B vaccine. I mentioned it to our doctor at Children's Hospital of Philadelphia, and he had never heard of it. I sent him links to the article and his response (at age 60+ and as a leading expert on metabolic bone disease) was "wow, I learn something new every day." We had my daughter tested (she is 13) and sure enough she doesn't have the proper antibodies considering she got the full vaccine series (I think you're supposed to be >10 and her number was .7). So, we are about to embark on a new series since she is healthy and growing now and presumably (hopefully) will respond to the vaccine now. PLEASE DON'T MAKE THIS THREAD ABOUT VACCINATIONS!! This is FYI - if you don't want your child vaccinated then please keep that to yourself! I have no desire to start or participate in a vaccine debate.
  2. Pret A Manger Changed Salad Dressings ;-(

    We went to a Pret A Manger while visiting Chicago over the holidays. I had done my research for my daughter and THOUGHT I knew what to do. But nothing was labeled (unlike I had read it was) so I asked the manager for a list of their gluten free items. He told me that they don't provide it anymore, and have removed all gluten-free labeling from their products. Because we were hungry, and my daughter isn't very sensitive, I had him tell me the 3 or 4 items that "used" to be labeled gluten-free and she chose from those. We did read the ingredients lists on those and they appeared okay. My guess is that they can't control for cross contamination so they are choosing to stop any claims of gluten-free.
  3. I guess every kid is different. My daughter was diagnosed in April 2013 at age 11. We immediately went entirely gluten free - our entire household. Her initial TtG was 99 on the scale where <4 is normal. She was retested 6 months later and it was down to 6. We just got results yesterday from a bloodtest this week, and she's <1. (we were doing a blood draw for something else, so the doctor threw in a TtG just for the heck of it - it really wasn't time to re-test). So I guess we're just lucky - but also really careful. We are a completely gluten-free household, I got all new cookware, threw out all wooden spoons, etc. But since her first good result in October we have relaxed a little about eating away from home and she still improved, so we're feeling really good about it. Hang in there, and I think the downward progress is really what matters. Every person reacts differently.
  4. That's a tough one! My daughter is a year younger, so we're not there yet. So, I really don't have any advice except good luck. It's a tough age. My daughter also doesn't like to be singled out (won't eat her food we pack for her and chooses to go hungry instead in group situations ).
  5. I recommend getting one of the product guide books, such as Cecilia's Marketplace, to help you navigate the grocery store at the beginning. It helps you figure out which barbeque sauce is okay, etc. I referred to it constantly at first but haven't opened it in months now. I can't seem to put in the link, but you can just google it and order online.
  6. Prior to diagnosis, one of our best ways to get a somewhat decent breakfast into our daughter was a Carnation Instant Breakfast. In our search to find a replacement for that, I ordered a product from VitaCost.com called Spiru-Tein for kids only (not sure on that spelling). I thought it was a perfectly suitable replacement, but our Miss Particular didn't agree. I don't know if she would have been less particular at age 6, but I think it's worth a try!
  7. Downtown Atlanta, Ga

    Mellow Mushroom pizza! We ate there last summer as we passed through town and loved it. I don't know exactly where it is in relation to where you are staying, but it wasn't far from World of Coke. They have a disclaimer at the bottom of their menu, but do have a separate prep area, etc. We have eaten at another one and have had great luck.
  8. We went gluten-free last April due to my daughter's celiac diagnosis, and I, too, was very confused about the flour blends. It seems that every cookbook I bought or checked out of the library called for something different. My suggestion is to find a book you like and go with that blend to start - either a purchased one they recommend or one you blend yourself. My first best purchase was 1000 Gluten Free recipes by Carol Fenster. It's my "go to' for all sorts of things, from marinades to funnel cake batter! Everything we tried from there was good. Then I purchased a bunch of Jules Gluten Free Flour and used that in any recipe, and it was good. Then I discovered GlutenFreeOnAShoestring.com and everything I have made from there is WONDERFUL! She recommends mostly Better Batter flour blend, but provides "copycat" flour mix recipes. She came out with a Bakes Bread cookbook in December that has changed our lives. I made baguettes last night, and they were fabulous! So....my best advice is to find one cookbook author/blog you like and go with that. It's so confusing otherwise...
  9. My 11 year old lost 5 pounds in a month when she was healthy - not even a cold. And no noticeable change in appetite. That was Dec 2012, and she was diagnosed with Celiac in April 2013. I had 3 different doctors tell me the weight loss was no big deal, and they all had to do some major backtracking when it turned out she had Celiac. She didn't have any GI issues, but has osteoporosis, and certainly weight loss and osteoporosis are two major Celiac factors - but instead I was told to stop worrying so much. And it took a visit to a different doctor/hospital for someone to suggest Celiac. If I were you, I wouldn't worry too much about a pound or two when your son is ill with something else - my daughter does that all the time. It's the unexplained weight loss that worried me.
  10. Chipotle's

    Chipotle is our favorite now. We always ask them to get fresh lettuce and cheese bins out for my daughter's burrito bowl, which they do. All locations change their gloves, and we've been to one who changed spoons. I don't insist on the spoon change because I'm not sure it matters. At some restaurants we really have to watch them to make sure they don't hand it down the line to someone with contaminated gloves on. We're working on getting my 11 year old daughter (dx Celiac 4/2013) to be more proactive about taking care of herself. While we were traveling over the holidays, I suggested she order for herself at Chipotle and follow it herself (because I was ordering food for 4 other people and it gets hard to follow). It was so cute. She stepped right up and said "I have a severe gluten allergy and you need to wash your hands and change your gloves now, please." We talked later about how asking rather than demanding might be more polite, but I still loved it!
  11. I thought the TtG was supposed to be under 20, not 4? No matter which is right, you must be doing a great job to get it down that much in 6 months! And I don't think the oats would affect that if they are gluten-free oats. I think some Celiacs just can't tolerate oats, but they do not have gluten in them and so therefore should not affect the tTG number.
  12. I've been reading the advice about dancing on pointe with great interest. My 11 year old celiac daughter with Osteoporosis (-3.4 in her spine, -2.8 in her hip, so pretty severe) is a dancer and all the doctors have said that dancing is the absolute best exercise for her to help build her bone density. She has been gluten-free 9 months now. She does take lots of calcium and vit D supplements because of the bone leeching issue. Her blood calcium levels have always been just fine, and prior to the Celiac Diagnosis, she was spilling all the extra calcium out in her urine (which I was having trouble getting doctors to acknowledge). A new 24 hour urine test after being gluten-free 6 months was much better - the calcium was at a normal level in her urine. Which shows that her body is absorbing it properly now, presumably. She is about a year away from being tested for pointe shoes. I'm absolutely dreading having to be the mean mom and telling her she has to wait until her bone density improves more, but if that's what we have to do we'll do it. She has dreamed of the day she gets her pointe shoes since she was about 5, and is thrilled to finally be in a pre-pointe class this year.
  13. My 11 year old has Osteoporosis from undiagnosed Celiac. She also has mild scoliosis, which is being watched very closely because of her low bone density. So in that sense, I think it is related. Her bones are very thin and the doctors seem to think that is reason to watch for the scoliosis more.
  14. Osteoporosis is also what led to my 11 year old daughter's Celiac diagnosis last April. After 6 months gluten-free, her TtG was down to 6 (previously 99) and we presume that her gut is healing well. I have, belatedly, decided to put her on probiotics, too, based on all my reading. Her bone density did not show any improvement in 6 months. Because she is pre-pubertal and about to go through a huge growth phase, we are having to be more proactive about increasing her bone density and are treating her with IV bisphosphonates (such as Fosamax or Boniva). This was not a decision we made easily, and one we are still somewhat uncomfortable with. So - to all of you others out there - please don't rag on me about that. I'm just trying to share my experience with this new poster. I have done TONS of reading on this subject (or as much as I can find anyway) and there is very little pediatric experience with bone density recovery after a Celiac Diagnosis. However, from what I can tell you should be able to expect some normalization in yours in the 2 year gluten-free range. There is a lot more information about adult patients. But, we also found some articles (published in Turkey and Italy) that indicate that 20% of Celiac's don't get the bone density recovery just from going gluten-free. They think there is a secondary autoimmune reaction going on, or possibly inflammation. They did find, however, that those patients responded to bisphosphonate therapy. Good luck to you, and I would suggest all the exercise you can get even though you are worried about fracturing. Our motto is "strong muscles protect weak bones" and we try to avoid contact sports but let our daughter do most everything else she wants to do. Fortunately, she is a dedicated ballerina and that is the best exercise in the world for her to build strong muscles and bones. Maybe you could try yoga?
  15. Glutened At Pf Changs

    We were on the road New Year's Eve, traveling from Chicago back to home in Virginia. We were (successfully) outrunning the storm and just went as far as Indianapolis. We decided to get carry-out from PF Chang's and eat in our hotel room so the kids could watch all the Ryan Seacrest shows. I ordered online from my phone and we ordered all gluten-free items. It was all wonderful (except for one beef dish) and we loved the big orange "gluten-free" stickers on everything and especially the little packets of gluten-free soy sauce. Reading your story I'm glad we ordered all gluten-free (only my daughter with celiac is gluten-free outside of the house) so we didn't have to worry about any mix-ups. So sorry about your bad experience, but in general PF Changs ROCKS! Just wish we lived near one!