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lillysmama08

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  1. Hi, Can anyone suggest great tasting and fun cakes/decorations for a childrens birthday cake. I would also love to have some suggestions on a cookbook for cakes/cookies. I was thining of using a box cake mix and decorating with jelly beans or Necco wafers, but I would like to try to make something myself. I want to make something special for my soon to be 3 year old. Thanks! :)

    Betty Crocker makes a great gluten free cake mix. I make it all the time for everyone and you can hardle tell the difference! Good Luck


  2. Hello:

    I'm a freelance writer studying studying journalism at Wayne State University in Detroit, Mich. I'm currently writing a story on celiac disease, specifically its prevalence and diagnosis in children.

    I'd love to have the opportunity to speak to a parent or family coping with celiac in the Metro Detroit area. If anyone would be open to speaking with me, please contact me. I'd be happy to meet or speak with you by phone - whichever is most convenient.

    Thanks for your time and consideration.

    I am not in the metro Detroit area but I would love to answer any questions you have.


  3. Hi everyone! I'm new here. I have a 16 month old beautiful daughter who I believe has Celiac Disease.

    I have been in & out of doctor offices with her since she was about 2 weeks old. She has a protein allergy to both Milk & Soy. She has been sick despite being on hypo-allergenic formula ever since solids were introduced. She vomits atleast once a week, and has chronic diarreah, stomach pains and has never slept through the night. She rolls around in pain in her crib screaming.

    I was told she had acid reflux & was giving her Zantac from about 3 months old until 6 months old when I took her off because of no change.

    Over the last 6 months it has gotten progressively worse. Just in the last 2 months alone, she has been to the hospital 3 times, pediatrician twice, naturopath twice and a walk in doctor once. The hospital told me it was gastroenteritis, then they told me it was the rotavirus. I went to a naturopath to take some blood to see if she could find anything. The results took a month to come in so the hospital on the third try referred me to a pediatrician. The Pediatrician put her on a restrictive diet free of eggs, citrus fruits, tomatoes, dairy (I wasn't feeding her this anyway) and chocolate. I did this for 3 weeks, she had no change at the time but I kept on it.

    The results of the blood test came back (skin prick, IgG). She tested positive for corn, eggs, chicken, cashews and almonds. I took her off those foods as well.

    2 months later there is still no change. Back to the pediatrician who then refers her to an allergist but the appointment won't be until March 10. In the meantime he told me if I suspect it could be wheat, to take her off all gluten.

    I ask "I thought you had to be eating gluten to test accurately for Celiac/gluten intolerance" and he tells me "No, it shouldn't matter if you eat foods or not... it will come up in the blood test". So now I'm really confused because I asked the naturopath the same thing since milk/soy came up negative in the IgG and she said I was right... since I wasn't feeding her those, they wouldn't be producing antibodies. Conflicting information...

    Anyhow, I can't stand to have her on gluten any more. She weighs 20.5 lbs (same weight since 10 months old). Her allergist appointment isn't for a month... what should I do? The poor thing has been sick long enough & it took me probably 60 different doctors until one listened & referred me to an allergist. Right now I'm changing up to 10 diapers a day of watery diarreah. Her food literally goes in & comes out within an hour and most of the time it's not even digested.

    I've been researching the heck out of Celiac & everything points to it (in my humble opinion). Stomach pains, diarreah, vomitting, weight loss/no weight gain, extremely dry skin & scaly scalp, corn/egg/milk/soy intolerances. Am I going crazy?? Do you think I could be right?

    She tested negative for Wheat in the IgG. what does that mean?

    I am in desperate need of someone to talk to who has experience with this. I can't stand to watch my poor daughter suffer any longer and I've been telling doctors that she needs to be tested for this for a year now but no one listened. :( thank you!!

    You poor thing!! This sounds horrible, but you are right do not take her off gluten untill she has been tested. Gluten levels are normal from 0-19 anything over that is high. My daughters levels were 33, now they are 2 so i does change dramtically. I would make an appointment with a gas. dr asap to get a celiac panal or go to you pediatricain and ask for one. I would not wait any longer this could be doing some major damage to her insides! Hope you figure things and keep us posted! Good Luck


  4. I was diagnosed with Celaic this last November and my daughter, 22 months, has had diarreah for nearly 2 months now. She eats gluten like dad and brother. What tests were done to confirm that your child had celiac? I can't imagine a blood draw on her (that's what intially gave me a positive test).

    Yes they would do a blood draw. My daughter was a little over a year for her first blood draw and then she had the scope at 18 months. Its not that bad but she is pretty used to it since she has had her blood checked every three months since here diagnosis of celiac one year ago. Good Luck!


  5. I agree with you. If the child is having no symptoms and is thriving there is no need to put him through these yearly procedures other than to pad the GI's pocket. Do make sure that both parents and any brothers and sisters get tested also, even if they don't think they are having symptoms.

    no, no, no, that is not routine. My daughter had the one biopsy and that was it. She has her blood checked annually but not a biopsy. So if you are worried about it ask more questions or just say no its not nessesary. Good Luck


  6. Hey, I am hoping for some answers. My 2 1/2 year old daughter has had chronic bowel issues most of her life. Since about 6 months, she has had chronic constipation issues, alternating mushy diapers. She is sick all of the time. In her short life she has had RSV, Bronchitis, Croup, Strep twice, multiple ear infections, continuous coughs/colds, and horrible stomach viruses (one lasting 10 days, one 15 when the rest of the family had it for a day). She has been diagnosed with Reactive Airway Disease recently. She has become much more irritable over time. She is complaining of tummy aches all of the time, and has bloating every day now. At this time, she is having anywhere from 3 to 6 stools a day, some formed, some mushy. She is hungry all of the time, and is begging for food nonstop. She has been 24 pounds for what seems like forever. With this last stomach virus, I took her to the ER on day 12 of sickness. They admitted her to the hospital and kept her for 5 days. She had multiple stool samples to test for bacteria/parasites. She also had a Celiac panel ordered by the pediatric GI she saw at the hospital. The panel came back positive for Celiac, so the GI set up a scope. The scope and biopsy came back negative. Before the scope, the GI was pretty convinced that she had Celiac, but now who knows. He says it is possible for the TTG to come back positive but not have Celiac??? He does not think I should put her on a Gluten Free diet yet, as she does not have an official diagnosis! Can anyone please offer any similar stories, advice, or help on this matter. I just want my child better.

    I would do the gluten free diet! Good Luck!!


  7. Hi- after years of unexplained allergic reactions, chronic itching, stomach aches, and being chronically ill with colds and viruses, we finally have an answer and are actually relieved. Our 6 year tested positive with a blood test for Celiac and she has now been gluten free for 5 days. My husband and I have decided that we will have a gluten free house instead of just limiting her diet, to make it easier fixing meals and hoping that it will help our daughter not feel so different after years of elimination diets, testing, and doctors visits. Recently she has had multiple allergic reactions to different antibiotics, is it necessary to put her thru the biopsy test if the blood test was overwhelmingly positive? Does this really need anymore confirmation? I just can't see putting her thru an operation just for

    the 'golden seal' and putting her back on gluten which will further delay her progress. She has missed 25 days of school this year already. We really want to just move forward now.

    Our 2 year old has celiac and our specialist said that a biopsy is the only way to make a 100% dignosis. The biopsy wasn't that bad it only took like 45 minutes between her leaving the room and coming back. It was also helpful to see how much damage this disease can really do, so we could fully understand the importance of being gluten free. It may not be completely necessary but for us it was helpful. Good Luck


  8. Stressed parents looking for help! Our 5 year old son has been presumed gluten intolerant from a blood test that was initiated due to life long battles with diarhea. We have had issues for the past 6 months or better, getting him to get to the bathroom in time. With a gluten free diet the diarhea has almost completely stopped, but I can't get him to get to the bathroom on time. There are always messy pants to clean. Is this something that is common in children with Celiac or am I dealing with behavioral issues? His dad and I are about to lose our minds, or at least it feels like it. Can anyone help...if not, I am back to the doctor's office!

    Sorry to hear about this problem. My daughter is 2 1/2 and she has no problems getting to the bathroom even when its diarhea. She has been gluten free for over a year and doesnt usually have diarhea problems but she makes it to the potty usually. Good Luck


  9. Hi, I'm new here, so thanks in advance for your help. My husband has celiac (manifests as dermatitis herpetiformis) and our son, who DOES eat gluten, is almost 18 months old. Unfortunately, he has been at the same weight for the last six months. As an infant he was in the 80th percentile in height at 75th in weight, but those numbers have been steadily decreasing, and based on the home weigh-in we conducted I'm sure that at his next checkup he's probably going to be below the 10th percentile in weight. However, other than his failure to gain weight, he is asymptomatic--he has no diarrhea or constipation, and he is a very active, social and happy child with a good appetite.

    We are determined to have our son tested for celiac as soon as possible. I have been informing myself about the antibody and genetic tests, but the amount of information is a little overwhelming, and at the same time unhelpful! My questions boil down to these: (1) Can/Should we get these tests done through our pediatrician, who seems well-intentioned by not particularly informed about celiac, or do we need to take him to a pediatric gastroenterologist for these tests? (2) How accurate are the antibody tests on an 18-month old? (3) I have read that not all laboratories are created equal in terms of celiac testing. How do we make sure that our son's sample is sent to a lab that is most thorough?

    Thanks in advance for your insights, folks!

    My daughter has celiac disease and we had her tested at 18 months. All I know is they tested her ttg levels which was part of what they called a "celiac panal" and her levels we 33 which is high. They then did a scope which should some damage to her intestine. They said that is the only way to be 100% sure. So then everyone in our family got tested and we found that the genetic test didnt test right. Also most insurance does not cover a genetic test but it does cover the celiac panal. Our pediatrician sent us to a specialist who ran the labs for us. Since she was diagnosed one year ago her ttg levels are now 2 and she has gained 6 pounds. So I guess if you want my opinion I would go to a specialist and get the test they suggest. I would say if there is a Children's hopsital around go to them I would think they would have the best labs possible. We live in Iowa and go to a place called Boys Town Pediatrics and they have been great about it! I know its overwhelming but I been through it so if you have any questions my email is superchic_02@hotmail.com. Good Luck!!


  10. I was in Fred Meyer the other day looking for some probiotics, when I came across a product that said it helps aid the digestion of gluten. The main ingredient was glutanese powder. We are very diligent about our two year old not getting gluten, but he does go to daycare three days a week and accidents happen! My doctor just has so little experience with Celiac's that I have to go to a specialist far away...sometimes I think this website is a faster better source for me! I am just wondering if it could really help, and if anyone has any experience with it?

    Thanks!!

    i would call your specialist first but it doesnt sound good to me. My daughter is also two and when she gets sick its only brief so I would just deal with it i guess. I know it sucks but i dont think anything is really proven yet so I would just say ask your specialist. Thats just my opinion. lol Hope it was a little helpful:)