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Genna'smom

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About Genna'smom

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    oakfield, ny

  1. Hi all- hoping someone could tell me what is the best way to help my daughter get over being gluttened? Do i treat it like she has D and go on crackers, toast, rice etc or can I let her eat normal foods? Thanks for anyone who has been there. She was diagnosed at 2 years old and it has been a long time since this has happened and it has never been this severe.... Any help would be greatly appreciated. :(


  2. Hi Jen

    I too have a 5 year old who we found out by accident she is a celiac at 2 1/2 yrs old. She is still small but at least she is now growing thanks to being gluten free. The way we found out was that she stopped eating and drinking and was hospitalize due to failure to thrive. They ended up doing biopcies of her esopgaus and intestines as she had had gerd bad and they thought she might have burned her throat. Needless to say she had lost weight and was down to 13 lbs. She ended up with a feeding tube for 1/5 years before she started eating again. She is now doing so much better but she still only weighs 31 lbs and she is growing taller so that makes me feel better. You can tell she when she get gluttened - she acts outs and ends up with stomach pains and in the bathroom. She too was constipated from young and did not breast feed. Hope this helps and follow your gut. The endoscopy and biopcy is the real true tests. All of her blood tests showed negative. Like others said try it and see how well she does..


  3. Thanks to all your replies. I remember reading this a while back we started this almost 2 yrs ago now and she had totally stopped eating and was on a feeding tube and is just starting to eat again. I have went either early in the day or late at night and they are not happy about using a clean machine but will do it once I explain the circumstance. She was so happy at lunch today to eat salami and cheese and crackers again.

    Thanks again


  4. Hi

    My 3 year old started preschool 4 days a week and due to her celiac's she has an OT and and counselor. I think I am lucky that the teacher is great. For thanksgiving she sent me home a list and I made Genna all the same things and brought in a special desert. She now gave me a list of all the craft things they would be doing in december so I can send in gluten-free ingredients for those days. She is working really hard with me to make her feel a part of the group. BUT she is leaving any day now to have a baby and I am worried about what the new teacher will be like. I will fight for her though.

    OK - you should be mad and I would sit down with the director of the preschool. My daughter's teacher and staff check her list every time they have any kind of food or craft thing. Also I did wirte up a letter to all the parents and it got sent home during the 1st week of school about BD parties, etc. I have had several calls from parents trying to accommodate me.

    Good luck..


  5. Hi

    Please also rememebr that blood tests are not always accurate especially at this young age. My daughter who was 22 months was tested for it and the only symptoms that she might have had were constipation and acid reflux..... nothing else till she jsut stopped eating and drinking anything.... Long story short ened up with feeding tube and ended up with a biopcie to check her acid reflux and found early warnign stages of celiac's disease......

    SO my advice to you is if a glutten free diet works then go with it...


  6. Hi

    I am in the same boat with the genetic testing.... UGH. Blood work is negative also and she is now 3 yrs old. She did have a biopcie at 2 and it showed early warning signs of Celiac's Disease. So we still do not know. But she had allergy test of top 100 and she has no allergies... I hate this. Today she keeps telling me her tummy hurts and has went potty several times....

    I will follow this post so we shall see what others have to say and I am going to post one myself...

    Bonnie


  7. My now 3 yr old also tested negative in blood work with absolutely no symptoms and she decided to stop eating and drinking at 22 months and no one knew why - while doing an endoscopy for her acid reflux they did biopcies and came back with celiac disease. It has been a long road with her as it took us about 7 months for her to start eating again and she just had her best dr apt in the last 1 and 4 months and is now up to 27 lbs 7 oz...... and 37 1/2 inches tall.....

    Good luck to you. We also decided to do genetic testing and that came back unsure also. So for now we will stick with the gluten free diet as she is growing, playful, silly girl....

    Thinking good thoughts with you.


  8. OK here goes = can anyone help me with these.....

    HLA-DQ2 -- POS

    HLA-DQ8 -- Negative

    Transglutinase Antibody - 4.4

    IGA - 75

    If anyone can help me decipher this more I would appreciate it. Does this mean she has it. Her GI Dr says we are in the same boat.... It does not mean she has it but they want me to keep her on a gluten free diet...

    Thanks for any advice out there.... Good news she actually gainee 12 oz this time

    Bonnie


  9. Hi all

    My now 3 yr old had genetic tesing and they told me we were still in the same boat. One came back negative and one came back positive. Can anyone tell me what this means. I was so hoping it would be negative and we could start life over again. I go to her GI specialist on Friday so I am going to ask for a copy, but in the meantime if anyone can shed some light on this I would appreciate it...

    Bonnie


  10. Not sure if I can be helpful or not but my 22 mo old daughter stopped eating and drinking and no one knew why and we ended up in several hospitals before a biopsy was done to rule of her esopgus being damaged from acid reflux when they stumbled upon early warning stages for celiac disease when everythng else said no. She has lost weight and was down to 18 lbs at 2 years old at that time...

    with being gluten free I am not sure if that will scew the results we are now pursuing genetic testing to see as we still do not know for sure...

    Bonnie


  11. Does anyone know how long it takes to get back results from blood work???? I finally had this done today for my daughter and am hoping and praying that is come back she does not have the gene and we can get on with life and try things for her again.... If not we really need to crack down on the gluten-free cross contamination stuff as something bothers her sometimes but not sure if that is her acid reflux which we took her off all her meds and she is finally starting to eat better after 1 year of fighting to get her to eat or drink anything at all....

    Thanks for any replies


  12. My daughter then 2 stopped eating and drinking altogether so she was on an IV when it was done.... Sorry not much help just wanted you to know the procedure was not bad and over quickly and she did have a hard time coming around and they gave her morphine and when she had to have a 2nd one done to put in a feeding tube I would not let them give her morphine.......

    Clear liquids are hard for a 3 year old to understand but chicken broth can taste good, along with Jello and popsicles, freeze pops, gatorade.... when she had her second one I tired to make this fun by putting the liquids in different cups with fancy straws, make jello jigglers for fun also...

    Hope this helps some and good luck to you.


  13. Hi

    I am sorry to hear about everything going on. It has been 1 year for me and I am finding more and more foods my 3 yr old can eat and likes that are regular foods with regular prices.... Last night I found out she can have cotton candy ice cream at our local dairy (I asked to read the label - It was Perry's and right on the big tub it state GLUTEN FREE) so it is still a learning process..... When Betty Crock comes out with the brownies, cookeis and cake mixes I am hoping it will make my life a lot easier....

    Ask anything here as people have great words of wisdom....

    PS - my 3 yr old shows no symptoms that you can really notice except failure to thrive.....


  14. Hi

    I have a 3 year old who started this as a 2 year old......I take along fruit cups, fruit snacks, yogos, cheetos, raisins, marshmellows, (I make my own trail mix with her favorites and keep it in a back). I also take home mae ceral bars (cocoa krispies, fruity pebbles and she loves the new honey nut chex and make like rice krispie treats with butter and marshmellows). I too freeze a juice box and use it to cool things and then she has a drink too!


  15. You have to fight for everything for your child.... My daughter at about 22 mos stopped eating and drinking altogether and ended up in the hospital and ended up wiht an NG tube and after 2 different hospitals they did a biopsy and it says she had early warning stages of celiac disease. She went gluten free in May of 2008 and now she is 3 and is eating better and has good days and has actually had 2 good weeks until today when she did not want to eat. My dr is telling me not to worry about cross contamination but others here are warning me that it could still be causing some of her concerns. Small, low weight and she has also been on a feeding tube for the whole year and had not slept through the night for her entire life.

    OK back to your question - I know that the blood tests are very unrealiable and they only way they say is by biopsy or the change in diet and use that as your diagnosis. I am going to have her genetic tested (not covered by insurance ) to see if she has the gene that would make it so she has celiac disease. We had some genetic teting done on her when she was in my belly as her twin sister passed away from a genetic disorder so I really want to know.

    Follow your mommy instincts, fight for what you feel is right and feel free to send me a private message if you want anything else answered.....

    Bonnie


  16. Help please. I really do not know what to think about my daughter.... My GI Dr is confusing me so much that I do not know what to do next.

    Genna is 3 and weighs 26 lbs. We have worked very hard in the last year to get her here based on a gluten free diet - BUT he still is not sure she has it as she did have blood work and it said negative but did a biopcy and it showed early warning stages. She has been on a feedin tube for a year and doign gluten free. We have seen some weight gain but still behind even when she is getting enough calories. My question for you all is this: How can I be sure she has it - she really does and did not have any major symptoms that made htis stick out to anyone. The GI told me not to worry about cross contamination as she does not have it that bad - also in the alst few weeks I have caught her with things ( a pretzel she took from a friend, a chicken nugget) and she has had no reaction to these things. As a mom I do not want to do anything to hurt her so that is why I am looking for some help here. Also the GI says we do not want to do a gluten challenge until she is at least 4 and more stable in her weight and eating because he does not want to see us where we were last year with her not eating or drinking at all...

    Thanks for any opnions and support you may all have to offer me!!


  17. Stacey

    I know it is difficult but it is easier than you think. There are a lot of product out there that are regular items that kids can have. Chicken nuggets are one thing Ihave not found a good one that my just turned 3 yr old likes. BUT she has learned to loved broiled fish and grilled chicken. As for cereal bars I make my own out of butter, marshmellows and she has 3 favorite cereals that are gluten free (honey nut chex, fruity pebbles and cocoa pebbles) and I freeze these and keep them around. Also she likes Pamela's pancake mix and so does the rest of my house so I make up a batch and freeze them.... I also found great gluten free ice cream cones at our local tops so now if we go out for ice cream I take one and my local dairy will fill the cone for me for free... How nice they are. And I make her Tinkyada Pasta. I can find all of these at either our local TOPS or Walmart.....

    Hang in there it is tough to begin with but it gets easier. We are still fighting issues with her but at least she has grown some. She had dropped down to 18lbs at 2 yrs old and is now up to 26 lbs but with the use of a feeding tube as she stopped eating and drinking altogether...... We are still questioning her Celiac and will do a challenge when sheis 4 and hopefully bigger and stronger and all her tests were negative...

    Bonnie


  18. Hi all

    I am looking for advice on what to do for my almost 3 yr old D. She is has been gluten free now for almost 1 year after she stopped eating and drinking and had to be put on a feeding tube to live. She is now starting to eat and drink more but we have been through her being sick for the last 4 months (cold, constant running nose, chronic cough and vomiting off and on) she has been on so many meds I finally just stopped them all. She is doing ok but is clingy, cries a lot, bites, has tantrum and does not sleep through the night...... When I approached her GI dr about making sure our whole house went gluten free he told me NO that is not necessary she is not that bad...... is there varing degrees of celiac's disease.... He told me her test showed only early warning signs - I aksed them about challenging her and he said no way as we do not want to be where we were 1 year ago with her not eating or drinking at all. My husband and I were both tested and no one has it in either of our families. Any advice or help from you all. I am seriously thinking of trying it for a couple of weeks to see what kind of reaction I get. Any help on a good bread and my 5 yr old and husband eat sandwhiches almost every day......

    Thanks from a frustrated mom....

    Bonnie