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Jenny

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  1. I have to sheepishly admit, I was aware that some celiac's can't handle oats. Since my daughter and husband (not formally diagnosed with celiac, but highly suspected) haven't had immediate reactions to oats, I assumed they were okay. That's what I get for making assumptions! I'll eliminate oats, Cheerios, and anything containing oat flour. Thanks for bringing this to my attention! I also advised my daughter not to handle the classroom gerbil anymore. She was fine with that. The Fasano Diet is probably the best option for my daughter...still I'm reluctant. It's the restrictiveness of the diet that gets me. I, selfishly, want to eat a wider variety of foods...stupid, huh?!? And I don't want to be tethered to my kitchen all summer long! I know I'm being a cry baby. I'm going to talk this over with her doctor...I'll let you know what's decided.
  2. In the five years since diagnosis, her TTG has NEVER budged. At diagnosis her TTG & IGG results both came back >100, meaning her levels measured greater then what the test measured. It took three years on the GFD for IGG to get below 100 and has been decreasing steadily since then...IGG is currently at a 29. Her TTG, however, is still >100. If it matters, she is IGA deficient. We are blessed to have an excellent GI Doctor who knows celiac, is thorough, and whom we'll discuss test results with later this month.
  3. Let me ask you all this: If she's basically symptom free, how concerned should I be about extremely high TTG levels after five years? Are there any long-term risks?
  4. Yes, she eats oats on occasion...maybe 1-2 times a month (Bob's Red Mill gluten-free Oats and sometimes Cheerios). Since she is pretty in-tune with her body and knows when she's feeling 'off', I asked if she has stomach aches after eating oats (her celiac symptoms come on very quickly after she is 'crossed'). She said she never gets sick after eating Cheerios, but sometimes has belly pain after oatmeal. Though it's a possible that she's a closet gluten-eater, I don't think its likely. She's a typical first-born child: perfectionist, rule-follower, responsible. Plus, she is very proud to have celiac disease, because she enjoys being a little different from her peers. She reacts very strongly to any CC that she doesn't like to take any risks. If she were cheating, I don't think she'd be able to hide her symptoms from me...she'd be sick as a dog. Her doc and I have both asked is she has ever cheated on her diet, and she said 'no'. Good question, but I think she's doing the deal! Could she be getting exposed at school? It's been five years since her diagnosis and her levels have NEVER come down. She's been at the same school, and, of course, different teachers/classroom every year. There haven't been any construction projects at school (she has reacted to drywall dust in the past). She's not using paper mache, Playdooh, or any kind of manipulative with pasta noodles. There is a classroom pet--gerbil, I believe; she has cleaned it's cage a time or two. I guess she could also be getting exposed from a dirty lunchroom table, too....I'll have to ask her about that.
  5. Thank you all for your input! I only have a few minutes to write, so I might not get to all of your comments right now. The first couple years on the gluten-free diet, my daughter still had regular symptoms (GI distress, extreme fatigue, pounding headaches, muscle/joint aches, and much more). Two years into the diet, we made our home gluten-free, and all of her symptoms basically disappeared. Though she still gets a few headaches and is tired a lot, I would characterize her as 'thriving'. I have never tried the Fasano Diet; however, at times, I have eliminated processed food from her diet. When she eats primarily a whole food diet, she has less fatigue and fewer headaches. As soon as I add processed food (chips, crackers, fruit snacks) back into her diet, her symptoms (though subtle) return. The longest I tried a whole food based diet is probably a 3-4 weeks, which has not been long enough to positively impact her blood-work. Thank you for helping me think through this! I'll get to the other questions after my kiddos are in bed :)
  6. Good afternoon wise celiac experts! Please help me, I need sound advice! My ten-year-old daughter was diagnosed with celiac (positive bloodwork & endoscopy results) nearly five years ago. During that time, I have been vigilant to eliminate gluten: we don't allow other people to cook for her (with one/two exceptions), we don't allow gluten in our home, and we don't eat out. Still it is not enough. After 5 years gluten-free, my daughter's TTG levels are still 'off the charts' high. I am concerned about my daughter's health and am discouraged. I buy all the groceries, read every label, and I have nearly complete control over everything my daughter consumes, but I am failing to get her TTG numbers down. Her GI doctor believes gluten is the cause of her sky high TTG levels and not a secondary condition. Since I don't know how else to help my daughter, my husband and I are honestly considering a gluten detection service dog. According to some of these dog trainers, dogs are able to sniff out gluten at minute levels..far below 20 PPM. Does anyone have any experience with gluten detection dogs? Are they worth the price? Can any of you recommend a trainer?? This would be a HUGE expense for us, and I want to make sure it's worth it! Thoughts???
  7. Are you nursing? If so, are you gluten free? Gluten from my diet seemed to effect my nursing baby's skin. (I don't have celiac, but am rather a mom and wife of two celiacs). When I went totally gluten-free, his rash totally cleared up.
  8. If you are willing to drive, pediatric GI, Dr. Daryl Fish, is the best. He is at Marshfield Clinic in Marshfield, but also travels to Wausau and Eau Claire. Besides being a wealth of information, he is very caring, an exceptional listener and great with kids. Whenever my daughter has an appointment, I am impressed by the amount of time he spends with us. He never seems rushed and always answers my questions. You won't find a better pediatric GI.
  9. I agree with Southpaw13. Your child didn't cheat, had a great attitude, and washed his hands after the craft. He deserves praise and a big reward for making the tough choice to stay healthy. When my seven year old was in a similar situation and made the right choice, we celebrated by having dessert before supper. She loved it and felt proud of her actions too.
  10. I shop at Aldi's all the time and purchase many of their canned beans products--garbanzo, black, and refried. No on in my household has ever had an issue with them. Hope this helps!!!
  11. My daughter was five when she was diagnosed through a biopsy. The week before the prep, I talked up the fact that on the prep day, she could only have lots of sugary things--soda,jello, popsicles. She helped pick out all of her prep 'goodies' and we rented a couple movies for the big day. On prep, the entire family fasted to support her (even her three-year-old little sister). By the way, I couldn't believe how much more time I had when I didn't have to spend time cooking, eating, or cleaning dishes! Prep and procedure was much easier than I anticipated. Looking back, I am so thankful her celiac was biospy confirmed. It is serious disease and requires extreme vigilance for gluten-free diet. The positive biopsy took any fragment of doubt away. Good luck!
  12. Thanks Ladies!!! I can't wait to try the recipe! I think I will also go back to fluffing the crust by hand. I hopefully won't have to bring out the steak knives for my next pie
  13. Does anyone have a fool-proof pie crust recipe? Or any tips for making the crust flaky? I have been using Carol Fenster's recipe for pie crust, but can't get it to turn out. It's a good tasting crust, just tough. I have made other recipes by Carol Fenster with great success, so I'm pretty sure the problem is me, not the recipe. I use a food processor to mix it. But, in order to get the ball to form, I have to add a lot more liquid than what the recipe calls for. By that point, the dough is way over worked and no longer has pea-sized chunks of butter in it. Any suggestions? Here's the recipe: http://www.motherearthliving.com/food-and-recipes/recipes/basic-gluten-free-pie-crust-recipe-ze0z1309zmel.aspx
  14. Thanks for the advise. I, too, was a surprised that her teachers were asking her stop. I always viewed it as something she couldn't control. Now that I have (hopefully) found the source to her throat clearing, she'll be able to stop before kids mock her for it. She is a really sensitive kid, and getting made fun of for something she may not be able to control would be a blow to her self confidence. It's interesting, Ender, that you picked up on the lack of effective classroom management. It has been a trying year for my daughter. Her teacher is close to retirement and I suspect has just given up. I can't duplicate her favorite goodies, because it's the brightly colored candy that she misses. I could probably go to the local co-op and find better tasting, organic, dye free options; however, I think the real issue is that she just wants to be like everyone else. In her seven-year-old mind, 'It's just not fair.' And, she's right. Mommida, my daughter's main symptom is a mean post-nasal drip (self-diagnosed), which she has to clear her throat of snot. More recently she has complained about her eyebrow cramping (weird, right?), which I believe is from her sinuses getting backed up. I had never considered that the problem might be Eosinophilic Esophagitis. Next week, my other daughter is getting tested for celiac. I will ask the GI about a link between IgG and dye intolerance and will report back.
  15. Hi All, My seven year old daughter was diagnosed with celiac 1.5 years ago. Although we have taken the gluten free diet very seriously, her IgG levels remain extremely high-->250. Her iron levels have normalized and she is basically symptom free, so her Doctor isn't too concerned, yet. Well recently I started to suspect that she has an intolerance to synthetic dyes--namely red 40, yellow 5, 6. When she is exposed, her sinuses immediately flare up and she has to constantly clear her throat. It's bad enough that her teachers are noticing and asking her to stop. After a day or so without dye, her sinuses are back to normal. Since her symptoms aren't too severe (just annoying), I allow her to have her synthetic dyed treats on Friday after school, so that she is cleared up come Monday. My daughter took going gluten-free like a champ, but synthetic dye free is another story. Any way, I haven't been able to find much research on dye sensitivity, but what I have found suggests that synthetic dye sensitivity triggers an IgG autoimmune response. Assuming she is intolerant to synthetic dyes, could this be the reason for her high celiac IgG levels? Any thoughts?
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