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MaryanneQ added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsSo DiscouragedI am so discouraged at this point.
My son has had many difficulties all of his life (Nick is 6.5 right now). He has always been painfully small for his age weighing in at 29.5 lbs and 40" tall right now. We were seeing an endocrinologist for some time who ran some tests for Celiac and they came back positive. (ttg, iga, igg) Actually the TTG was positive and one of the other two as well, the other one was negative. We were referred to a Pediatric Gastroenterologist in the same hospital(Children's Hospital) - He looked over everything and scheduled an intestional biposy for the following month, fully expecting it would be positive.
He is VERY familiar with Celiac stating, in fact the same day as my son's biopsy they did 4 other children, all who were positve. My son was negative. The Dr was puzzled. He's convinved he didn't miss abnything because he was very thorough with his biopsy.
In any case - he ran a few more tests , one of them being a repeat Celiac panel(TTg, Iga, IGG again) and this time he routed it through some lab in Buffalo (Names escaped me - starts with an I) that runs these tests regularly and the results would be more sensitive etc. Anyway - these tests came back perfectly normal ?!?!?!? So we decided to do the trial run of the diet anyway to see if we saw any chamges in growth.
December starts month 7 on the diet and NOTHING. No growth spurts, nothing is different. He never had the distended belly that you sometimes see, never had the bowel problems, had no concrete symptoms except for the lack of growth.
I'm just not sure what is going on. We go for our follow up after x-mas and I know we will do a gluten challenge and repeat all tests. I am so disappointed. I thought this was it. I et myself up for such a hard fall, putting so much HOPE into this diet. Everything seemed to fit. My son has horrible teeth, attention and learning issues, speech issues. Everything I read seemed liek this wodul be THE THING that wodul unlock everything and make life easier for him and now it looks like this just isn't it.
Has anybody else has flip flopping test results like this?
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MaryanneQ added a topic in Gluten-Free Foods, Products, Shopping & MedicationsPerdue Gluten Free Product ListI just received the list in the mail from Perdue I asked for a few weeks ago. Here's what they have listed as Gluten Free
PERDUE CARVING CHICKEN BREAST, OVEN ROASTED
PERDUE CARVING TURKEY BREAST, HONEY SMOKED
PERDUE CARVING TURKEY BREAST, HICKORY SMOKED
PERDUE CARVING TURKEY BREAST, MESQUITE SMOKED
PERDUE CARVING TURKEY BREAST, OVEN ROASTED
PERDUE CARVING TURKEY HAM, HONEY SMOKED
PERDUE CARVING CLASSICS TURKEY BREAST, PAN ROASTED
PERDUE CARVING CLASSICS TURKEY BREAST, PAN ROASTED, HONEY SMOKED
PERDUE CARVING CLASSICS TURKEY BREAST, PAN ROASTED, CRACKED PEPPER
DELI TURKEY BOLOGNA
PERDUE SLICING TURKEY HAM
DELI TURKEY HAM, HICKORY SMOKED
DELI DARK TURKEY PASTRAMI, HICKORY SMOKED
PERDUE SLICED CHICKEN BREAST, OIL FRIED
DELI TURKEY SALAMI
DELI TURKEY BREAST, OIL BROWNED
PERDUE HEALTHSENSE TURKEY BREAST, OVEN ROASTED-FAT FREE, REDUCED SODIUM
DELI PICK UPS SLICED TURKEY BREAST, GOLDEN BROWN
DELI PICK UPS SLICED TURKEY BREAST, HONEY SMOKED
DELI PICK UPS SLICED TURKEY BREAST, MEDQUITE SMOKED
DELI PICK UPS SLICED TURKEY BREAST, OVEN ROASTED
DELI PICK UPS SLICED TURKEY BREAST, SMOKED
DELI PICK UPS TURKEY HAM, HONEY SMOKED
BUFFALO CHICKEN WINGS HOT N SPICY SEASONED
GROUND BREAST OF CHICKEN
GROUND CHICKEN BURGERS
FRESH GROUND BREAST OF TURKEY
GROUND TURKEY BURGERS
FRESH LEAN GROUND TURKEY
PERDUE INDIVIDUALLY FROZEN CHICKEN BREASTS
PERDUE INDIVIDUALLY FROZEN CHICKEN TENDERLOINS
PERDUE INDIVIDUALLY FROZEN CHICKEN WINGS
ROTISSERIE CHICKEN, BARBEQUE
ROTISSERIE CHICKEN, TOASTED GARLIC
ROTISSERIE CHICKEN, ITALIAN
ROTISSERIE CHICKEN, LEMON PEPPER
ROTISSERIE CHICKEN, OVEN ROASTED
ROTISSERIE CHICKEN, TUSCANY HERB ROAST
ROTISSERIE OVER STUFFER ROASTER
ROTISSERIE TURKEY BREAST
SEASONED CHICKEN BURGERS, BROCCOLI AND MUSHROOM
SEASONED CHICKEN BURGERS, SAVORY CHICKEN
SEASONED CHICKEN BURGERS, SPICY VEGETABLE
PERDUE SHORT CUTS CARVED CHICKEN BREAST, HONEY ROASTED
PERDUE SHORT CUTS CARVED CHICKEN BREAST,, GRILLED ITALIAN STYLE
PERDUE SHORT CUTS CARVED CHICKEN BREAST, GRILLED LEMMON PEPPER
PERDUE SHORT CUTS CARVED CHICKEN BREAST,, ORIGINAL ROASTED
PERDUE SHORT CUTS CARVED CHICKEN BREAST, GRILLED SOUTHWESTERN STYLE
PERDUE SHORT CUTS CARVED TURKEY BREAST, OVEN ROASTED
PERDUE TENDER AND TASTY PRODUCTS
PERDUE CARVINGS WHOEL TURKEY
WHOEL TURKEYS (SEASONED WITH BROTH)
SEASONED FRESH LEAN TURKEY SAUSAGE, HOT ITALIAN
SEASONED FRESH LEAN TURKEY SAUSAGE, SWEET ITALIAN
ALL FRESH, MINIMALLY PROCESSED CHICKEN AND TURKEY ITEMS SUCH AS WHOLE BIRDS AND PARTS, INCLUDING BUT NOT LIMITED TO LEGS, BREASTS, WINGS AND GIBLETS ARE GLUTEN FREE.
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MaryanneQ added a topic in Gluten-Free Foods, Products, Shopping & MedicationsPurdue Ground Chicken/turkeyDoes anybody know if PUrdue ground chicken in bulk, in patties and ground turkey is gluten-free or not? The ingredients list natural flavors so I;m not sure. My son has severe dental issues so I need to use ground chicken to make chicken nuggets. I trie dgetting it from a butcher twice and it was just so dry - the Purdue ground chicken is so much moister.
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MaryanneQ added a topic in Gluten-Free Foods, Products, Shopping & MedicationsGoldfish Crackers, Cheesenip?Has anybody found a substitute for Goldfish crackers or Cheese Nips/Cheeze-Its? (Peppridge Farms I believe make them)
My son just loves these and obviously cannot have them any longer. Please let me know if there are any gluten-free alternitives out there
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MaryanneQ added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsTotally ConfusedMy 6 yo son, Nicholas, last summer was referred to a Gastroenterologist by our Endocrinologist because she ran the celiac blood panel (TTg, IGA and IGG) and 2 of the three came back with very high positives(I cannot remember which one was negative maybe the Iga? TTG was definitely positive) So he went to have a biopsy done and it was negative? The biposy was done by a Ped GI who works out of a children's hospital and is VERY familiar with celiac disease, in fact the same day as my son he had 3 other children who were positive so it's not liek he didn't know what he was looking for.
ANYWAY -The Dr consulted with some other DR's and they decided to rerun the blood tests sending them to some lab in BUffalo instead of to Quest etc and we just did that. Before the test results came back we were given instructions to start a one year gluten-free diet. We'd track his growth and then do a gluten challenge and possibly a repeat biopsy.
We started just the diet Monday but today got the results back from all of his tests. Everything was normal. He ran absolutely every test - it was 10 vials of blood and and 72 hour fecal fat collection and EVERYTHING came back normal (aside from his standard anemia issues). He did say though that they did some genetic test and Nick DOES have the genetic disposition to have Celiac?!?!? But everything else was normal. We were told to keep going on the gluten-free diet just to see what happens and they'll check growth and do a challenge in 6 months.
To be honest I am VERY upset :*( I thought this was IT, thought this was the answer to so many of his problems. Alot of stuff didn't fit with Celiac Disease but ALOT of stuff did :*(
He's VERY small - At 6 years old he is 29 lbs and 39" tall - the size of a 2 year old. He has chronic anemia, HORRIBLE teeth , attention issues(Not ADD or ADHD but very short attention span) speech issues. WHat he doesn't have is the intestinal problems - he has regular bowel movements, he will have diahrrhea(sp?) maybe once a month, but definitely not regularly. He doesn't complain about his belly hurting etc.
Any ideas please? Is this it or not? I just thought we hand an answer, after dragging him to so many specialists I got excited because I though we had found the key to unlock everything - kwim? I know it's nuts to wish this was it but it just seems like such an "easy" answer to so many difficulties he has had his whole life :*(
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MaryanneQ added a topic in Gluten-Free Recipes - Baking & Cooking TipsBread Crumbs?I have tried two gluten-free coatings - Cornmeal and Cornflake crumbs - both are "yucky" according to my 6yo.
Has anybody found a coating mixture that tastes close to regular bread crumbs?
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MaryanneQ added a topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseHow Do I Notify The SchoolDoes anybody have a sample letter or tips on how I notify the school about Nicholas' gluten-free Diet? We're finishing up the tests and he will start the diet next week. He is Special Needs with an IEP so he goes to school 11 out of 12 months of the year(No school in August for him) We have an IEP meeting next week and I need to know if his gluten-free diet should be included in his IEP somehow. He does not have the celiac disease diagnosis because his biopsy was negative, he will get it after a 1 year FG diet with improvement of his symptoms though.
I am asking the Dr for a letter stating that his gluten-free diet is medically necessary because I know otherwise I'll probably have a tough time with the school. What else do I need to do to orepare for this.
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