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About jen2be2

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  1. Hi There! I preperation for going back to school I picked up Minute Maid Fruit Falls. I called them and they told me that the item itself does not contain gluten but is manufactured in a plant with gluten products. Anyone try this and have a reaction/ non reaction? Thanks!
  2. I have a question for you all. My DD just had her 2nd annual DEXA scan. Her first one proved that she had Osteoprosis at the age of 5~ and after a year of being on the gluten-free diet. Her total score was -2.5 I just got her results back today for this year and her score is -2.4. I am a little frustrated by the lack of improvement in a year. The endocrine Dr had implyed last year that in a year we would see much improvement. Our appt with endocrine is not for another 3 months. How much improvement should I see in one year?
  3. My DD Jiselle has had chronic leg pain since October '06( since she was 4 years old). She can not even walk up the stairs without being in pain. She was dignosed with Celiac in Jan '07. She got her first - bloodwork 6 months ago and she still has terrible shin pain. We just met with Endocrine 2 days ago and after several tests and scans,he has dignosed her with juvenile ostoperosis (sp?). He tells me that her leg pain could be caused by her very low bone density.
  4. My kids have been on the gluten-free diet for a year. They have had no problems with milk products after being gluten-free for 2 months.
  5. When we found out about Shaylin and Jiselle, we had everyone who was not + by bloodwork to the test to see if we were carriers of celiac disease. As it turns out, Serena is not a carrier, but both my husband and I are. Hayden's genetic test showed on the DQ2 gene that he has the pre-disposition for celiac disease from both me and my husband. This is taken from the article that our GI gave us prior to us having our genetic testing done. This is from an article published by the University of Chicago Celiac Disease Center. [quote][b]If I have a gene for celiac disease, does that mean I have celiac disease?[/b] The gene test does not diagnose celiac disease. It places an individual into an "at-risk" group for celiac disease, which indicates the individual should be closely monitored with antibody testing in the future. When the genetic predisposition for celiac disease was detected researchers noted that the genes were a nessary but not sufficient condition for the disease to develop. In fact, up to one third of the U.S. population has the genes for celiac disease. This means that people with DQ2 or DQ8 can develop celiac disease at any time.[/quote] We are doing some further research on to what is causing the leg pain. Hopefully we will have an answer to that real soon. [quote name='Mosaics' date='Jan 1 2008, 12:22 PM']"Carrier" for celiac disease? Never heard of that. As far as I know, if you have the gene, you have celiac disease whether or not you have noticeable symptoms. And you can pass that gene on to all or some of your children. My mother has celiac disease and 3 of her 4 children have it. Both of my kids have celiac disease and I have celiac disease, but weren't diagnosed until they were in their teens and I was in my 40's. Both of my children had terrible leg pains. I had them when I was a kid. All doctors said they were "growing pains". No, they are a symptom of celiac disease. I'm pretty sure there are some articles on this site about the link between gluten and developmental delays/autism/ADD, etc.[/quote]
  6. Update from the GI from last week.... Shaylin~ She is now in the 50% for height and the 70% for weight(30 lbs. That is up from 18 at this time last year ). The Dr is not so pleased that her IgG is still elavated so we get to do another endoscophy with biopsy after the holidays. She is thinking that Shaylin may not be healing correctly. Then she wants us to see a celiac disease nutritional specialist at UCSD research division after our appt with the food allergist. If Shaylin does have the suspected corn allergy as well, getting enough of the daily nutritional vit.s will be hard. The suckie thing about this is that it is all the way in SD, over an hour drive from here. It is also not covered by insurance~ but they are a resarch facility~ so they ask for $100 donation and then we get to see them anytime we want for nothing else. We also found out that UCSD is getting in a Ped. Specialist who is just for celiac disease! I am going to get more info about it in Jan to see how we can get in to see this person, as this does have to go through insurance.( Hardly any GI's are specialists in celiac disease, but they are the division of Dr's who cover this disease.) We also found out from stool work that Jiselle is consipated and this could be causing her tummy pain. So she also needs to see the nutritionalist to figure out what she can eat or take to help her not be as consitpated. Then Jiselle was prescribed to have weight bearing exersize 2x a week( that is one more class than now)for her low bone density. The good thing is that I can now count off tumbeling and soon to be cheerleading classes on our taxes as a medical RX~ that is of course that we spend more than 7% of DH annual income on medical expenses~which I have no doubt that we do. The Dr also said that since the Ortho department did not have any ideas about the leg pain that we needed to take up the quest for what is causing the chronic leg pain with her primary dr. I was a little shocked that the news was not what I had expected it to be. I had expected to get an all good for Shaylin, until we saw the food allergist and I had expected a referral to another dr for Jiselle's leg pain. --------------------------------------------------------------------------------------------------------------------- Our Christmas We had a great Christmas. My parents made it down on the 24th just fine. We had a nice dinner and went to bed early. The kids got up at 5:30 and we all headed downstairs to open the gifts. The kids really made out like bandits. I got a lot of socks and underwear. Troy also got me some perfume. Later on that night, we took the kids to see Disney Princesses on Ice. It was incredible! Would you believe that they even found a way to set off fireworks inside the arena? The next day, I woke up early and got ready to go to Disneyland.I opened my gifts, which was a really nice bottle of perfume from my parents, Rush Hour 3~Harry Potter and the Maroon Five celiac disease and some Disney Dollars from Troy and the kids. We left here at 8:00 and got there by 9:30.I knew that it was going to be crowded when we had to park in Pumba. And boy, was I right. It was the most croweded I have ever seen, so we did not get to go on any rides.But it still was great to shop. I got a very cute cream tinkerbell sweat yoga type pants and a matching zip jacket, a very pretty watch, mickey "diamond" earrings, a tinkerbell magnet and a licence plate frame.To make it even better, I got 20% off with a cupon. We had lunch at the Blue Byau(sp?), the resturant inside Pirates. We had a table right by the water front. It was wonderful! Afterwards, I went to my jewelry store and tried on jewerly~ which was a lot of fun. At downtown Disney I got some copper colored glitter candles for my bedroom. We left at 3:30 but did not get home until 5:50. We had Chick-fil-A on the way home and it was good. That night, I played UNO with the kids until it was bedtime and I finnished the day by watching Rush Hour 3(I thought it sucked ). Overall, it was a wonderful day. Yesterday we went to Armstrongs and picked out plants for the backyard and went to Target. When I got home, I checked my e-mail for the first time in 2 days and I found out that Disney approved the purchase of the DVC on my birthday~ so we are able to continue with Escrow! On Friday we went to the mall to have Jiselle's birthday picture taken. Then we came home. I baked her Ariel cake for her birthday. She really injoyed it. I can hardly believe that she is 6. It is going by way too fast. ___________________________________________________________________________________ I am so sick of chores. Yesterday I cleaned the shower (with a toothbrush~ I might add)while the kids were watching Rattatuli(sp?). While I was cleaning the rest of the bathroom, Hayden found the toothbrush and put it in his mouth. Yup~ that's my son. Then I went on to clean the kids bathroom and tried to unclog the kids tub drain. Then I came downstairs and washed Katie's bed, did dishes, cleaned the kitchen. Whoo, I sure know how to have fun. I have to make an appt for Katie. She is doing the butt skoot~ so I am afraid she might have worms. I guess there can't be a part of my life that does not concern poop. I got an Celiac.com update and I printed off some articles. Mainly they are about the gluten-free diet and the change in behavior of kids with ADD/ADHD/Autism. They mentioned the specific carbohydrate diet and a book. It is a gluten-free diet and it is even more restrictive, but I am looking into it to see if it might help Hayden even more than a gluten-free diet. I ordered the book that the article recommended. Oh, I forgot to add that I went through all of Shaylin's baby clothes last night and got them ready to give to someone else. It was so sad. I wish that this was not the end of my child bearing years. Today we plan on taking the kids out to see Alivin and the Chipmunks. Nothing else exciting going on.
  7. Ok, it has been a long while since I have attempeted to journal and I figured that it was about time that I tried it again. So much of my life has changed in the last couple of years and months that I will try to sum it up in bullet points and get to the daily grind stuff pretty fast. 1. Dh and I met in 1995, got married 1999. 2. Had Serena in 6/2000 Serena had heart surgery 7/2000 3. Had Jiselle in 12/2001 4. Had m/c in 1/2003 5. Had Hayden in 10/2003 6. Had m/c in 2/2004 7. Had Shaylin in 5/2005 8. DH got V in 9/2005 9. Moved to GA in 12/2005 10.Shaylin digonosed with Celiac 12/2006 11. Jiselle got digonosed with Celiac 1/2007 12. DH and I are carriers for Celiac, Hayden is a carrier for Celiac~ 1/2007 13. April '07 we moved back to CA. 14.August '07 Hayden is dignosed with receptive/expressive language delay with severe articluation. Starts speech therapy. We are told that we have to wait until he enters school before they will dignose him with ADHD as they think he is "too young" to make a dignosis. 15. Nov '07 Jiselle's DEXA scan shows that she has low bone density. Still trying to find out why she has chronic leg pain. On to the next dr... 16. Dec. '07 Hayden reacts strongly to the gluten challenge. We pull him off the challenge for the celiac disease test due to his reverting completly back to a full blown ADHD child behavior. 16. We are in the process of getting the Disney Vacation Club!
  8. Thanks Ladies! We use CA Baby shampoo for all of us, so I guess I will dilute it and give it a try.
  9. Hi everyone! I am looking for a gluten-free dog shampoo. Any suggestions? Thanks!
  10. ykes, the vit E is news to me too. I will have to call on my brand tomorrow. You also might want to check the brand of napkins, soaps and papertowels.
  11. Yeah! It took a year but Shaylin's IgA finally went down to 0!!!!!!!!! I am so excited! Now if I can just get the food allergist to confirm a corn allergy next month......
  12. Hi There. I agree with others that some other foods might also be aggrivating her as well. Milk and corn are the most likely suspects. Or it could be that she is still healing or a combo of both. I also want you to know that Jiselle, my 5 year old, has been on a gluten-free diet for a year in early Jan. and she still has stomach pain. We re-did another endo/w bio and it turns out that her villi are perfect, but she still has mild gasritis. We were told as she continued to heal, the pain would lessen and eventually go away. I know this is not what you wanted to hear,as we do not want our kids to be in pain, but it really can take anywhere from 6 months up to a year or more to heal. As I said before, we have been on a gluten-free diet since Jan. and Jiselle got her first - IgA in April and Shaylin just got her first - last week. Hang in there......
  13. Hi Julie, I was you exactly one year ago. My youngest DD, who was 18 months at the time was suffering from FTT(failure to thrive). She had severe reflux, chronic diareah and a tummy bloat that you would not believe. She was 18 lbs and loosing weight fast. She was dying and we did not know why. We finally found a GI that was able to tell us that she most likely had celiac disease. Her blood IgA came back at 165. When they did the scope, she had villi atrophy. We were devistated. Since we found out that it was genetic, we had all of our children tested. As it turned out, our 2nd DD also had it. We were shocked because she appeared so healthy. Her IgA came back at 216. All she had ever complained about was tummy pain( but that was always before dinner and we thought she was just hungry) and leg pain, which we thought was just growing pains~ she is 5. Our two other children had - blood work, but we chose to have the genetic testing done on both of them from Kimball Genetics( it is important to keep in mind that a) if you are a carrier, you can go active at any point in your life and 20% of people who have celiac disease will test - on blood work, but in fact intestional damage is still being done.) We wanted to know for sure if all of our kids were carrieres or not. We did not want to keep on poking them or restricting their diet if we did not need to. I am so glad that we did. We found out that our oldest DD is not a carrier, but or son is. And we also found out by both of their genetic tests that both DH and I are carriers. The genetic testing is a little expensive, but it was well worth it for us. Kimball's staff was just wonderful to work with and they do give a multi-test discount. We were able to do it by cheeck cell samples, which made life so much easier. And we got the results back within 3 business days. I would highly recommend this for your family, so you know who exactly to look out for. It has been almost a year now that we have been on a gluten-free diet and we have seen many improvements. Jiselle's IgA dropped to 0 in April and Shaylin's just got there this past week. It is amazing how different the kids are off Gluten. Jiselle has become more healthy looking and more outgoing, Shaylin is just a ball of wonderful energy and Hayden has had major behavioral improvements since going on the gluten-free diet. In fact, when we were doing his gluten challenge this year, he reverted back to his old self on gluten, and as his speech therapist says, he was acting as if he had a severe case of ADHD( which we do suspect, but on a gluten-free diet it is more toned down). So we know that Gluten does effect not only your intestines, but behavior as well. We are still dealing with the fact that Jiselle does have low bone density and we are trying to find out what is causing her chronic leg pain. Shaylin also appears to have food allergies~ esp. to corn, which we will find more out about in Jan., but we are in such a better position than we were last year. I suggest getting "wheat free, worry free" by Dana Korn. She is the "expert" on celiac disease and the book explains celiac disease well, and how it is different than a food allergy or wheat/gluten intolerance. It also gives some basic pointers how to read food labels and to set up a gluten free kitchen. She also covers cross contamination. I would also recommend the "Incredible Gluten Free Food for kids" cook book. We have tried a lot of the recipes in it and we have found them to be wonderful! If you like to travel with the kids, you should know that Sea World, Lego Land and Disney Theme Parks do have Gluten Free options at the parks. This site also offers what I consider to be invalueable. The Gluten Free food list and Rx list. You have to pay for it, but they have done so much of the research for you. They have checked many different name brand foods and products to see if they contain gluten or not. I take it to the store with me( downloaded into my Palm) and I can see if something is gluten-free or not. I also like the RX one as I can take it with me when my kids are sick and I can see what medications are gluten-free. Now it does not have everything on the list, but it does cover a lot. They also do updates over the year, so the list keeps on getting longer. Oh, and if you spend over 7% of your annual income on medical bills( like we do), you should be able to count off the difference between the regular and gluten free food cost for her, as long as you get a RX from your Dr. stating that a gluten free diet is prescribed for your child. Just verify that with your tax accountant. Whole foods and Henrys has a great selection of gluten-free foods, and they have some even labeled gluten-free on the shelves, which is very nice. Henry's even has gluten-free chicken fingers and fish stick fingers. I just forget the name of the maker. They are in the fozen food section. Now to the kid friendly foods~ please note that most gluten-free foods has a very different texture and will take a while to adjust. Annie's gluten-free Mac and Cheese Hebrew National Hot Dogs Heinz Katchup and Frenches Mustard are gluten-free Chebe bread( it comes as a mix. They have pizza, regular , italian herb and cheese. Very easy to make). Tinkeada pastas are great Lundburg rice Envirokids Koloa Krisp rice bars( chocolate) Envirokids Panda rice bars( peanut butter) Glutino Pretzels ( highly $$$, but good) I hope this helps you start out.... ETA~ To answer your other question, it is very possible for any other of your children to be carriers and for your children to pass on the Celiac Gene. Here is my family genetic info as an example. DH= DQ2 strain. One normal gene in both the alpha and beta,the other gene is a carrier in the beta section only. Me=DQ2 strain. One normal gene in both the alpha and beta, the other gene is a carrier in both the alpha and beta. DD#1= she has 2 normal DQ2 genes and is not a carrier. DD#2= Has Celiac Disease DS= the first gene is a carrier in the beta section of the DQ2 strain and the second gene is a carrier in both the alpha and beta of the gene. Currently does not have active Celiac Disease. DD#3- Has Celiac Disease. As you can see 3 out of 4 of our kids have the gene for Celiac.And due to both DH and My genetic make up, we have a 75% chance of passing the celiac disease gene on to any of our children. Serena will not be able to pass it on as she is not a carrier, but Jiselle and Shaylin have a chance( we do not know how high as we did not do the genetic testing on them since we already knew they were +) and Hayden will for sure pass on the celiac disease gene to any of his children. Since your DD has celiac disease, she at least has one celiac disease gene. The only way to know what her chances are of passing it to her children is to have her tested. When the time comes, she and her DH should have genetic testing prior to having children to know what chance they have of passing this on to their children or they can just test each child after they are born to see if they are carriers.
  14. They did a whole lot of blood work when she had her 2nd endo and bio. last month. She was fine with all of her vit. levels. Her villi is perfect, but she does still have a mild case of gasritis. She is on gluten-free vit., but I will not be suprised if they give her some extra Vit. D supplements. Can low bone density be responsible for her chronic leg pain?
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