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About DLayman

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  1. She really is too young for a celiac panel.. My understanding is that they don't concider them accurate till about two years old.. The best thing to do is to keep up with the diet changes as long as they are helping her then do it. Lord knows you need sleep. Then when you start introducing solid foods keep a food journal.. what she eats and how it effects her.. That will be your most valuable resource at this age. With a history of Celiac disease in the family you should be cautious.. As far as symtpoms go.. sleeplessnes, irratability, gassyness, watery foul pale stools, lethargy are all symptoms to look for. I know my two year old did not sleep till he was about 15 months old.. which coincided with the time I weaned him.. He is not diagnosed yet and I am going to be talking to the doctor later today to make a case for doing the celiac panel when he is in for his latest lovely proceedure a colonoscopy.. Keep up with the diet changes.. reintroduce things slowly.. and keep a journal.. that is your best course of action right now. Hope this helps Denise
  2. You have had the antibody tests done did they actually give you the numbers or just tell you they were negative? Also did you have the DNA test done? Like you have been told you could have the gene and not have the antibodies as of yet. Also if they did not actually give you the numbers or a copy of the report request it.. you could have a low positive which in your doctors opinion could be a negative result and might be in error. check it out! Denise PS when your family insists that you give your child these items that make her sick.. these 'treats' say ok.. but then YOU can have the 'treat' of changing her diapers! They will probably back down!
  3. when we were gluten free before having to go back on gluten for testing... (good for you for doing it right) We typically had gluten free cereal for breakfast or eggs, yogurt and fruit. I also got Van's gluten free waffles. Lunch I lucked out because he doesn't really eat sandwiches. so I would give him the insides of the sandwich.. the meat and cheese. I also gave him P&B on rice cakes. With a fruit or veggie. Dinner.. straight meat potatoes veggies home made. A note.. for making mac anc cheese with gluten free pasta.. the pure rice pasta seems to fall apart and make more of a mac and cheese mush.. the rice with corn or potato flour pasta works alot better! When we would have spagetti I would make a seperate smaller portion for him because of the cost.. For lunches.. get creative.. make your own 'lunchables' with some of those small glad wrap containers and gluten-free ingredients.. Your best bet is to find a store where you can stock up and have bunches of this stuff available. And yes.. get with the school now.. get an IEP in the works. There are more dangers lurking in the school than the lunch room.. many art supplies are not gluten free.. pastes playdough etc.. shaped pasta.. and then there are birthday parties, quite often food is used for rewards... The sooner you start working on this the better! Did you mention he is autistic too?? So you should already have an IEP right.. you can just add this stuff in. Denise
  4. See if you can find some soft corn tortilla shells.. double check the ingrdients! Those can make good sandwiches. Presumably as he is on a gluten free diet his teeth should improve and his sensitivities may lessen, but that is a real issue! Rice cakes do make great sanwiches and they are not too hard and not too soft! they should be just right! I grew up in NW NJ and I know there isn't much in the way of health food stores out there.. you may just need to go east once a month to any store you find.. the Have you located any ROCK or other celiac support groups nearby? They will be of the most help to you locally. Also try this site for some gluten free recipes.. they require a little more prep but with some planning ahead you could freeze portions for lunches.. www.pecanbread.com Hope this helps! Denise
  5. Well the doctor ordered a colonoscopy for my two year old. It's movement.. on a reluctant doctors part. I guess I should be a little happy. Not looking forward to putting him through another procedure but the endoscopy went fine so I am sure this will too. I really want to get him to draw for the blood test while he is in there.. if nothing just to amuse me! And to get me to stop asking about it.. will you do the test huh>? will you do the test huh? will you do the test huh?? (in my best are we there yet voice) So they put them out for this too right? I should get the instructions tommorrow. Denise
  6. Kindness, Don't worry if they look at you like you are crazy! They do not live with this child 24/7 YOU do. YOU know your child!!!! There is no one on earth who knows her better. YOU are the expert on your child and don't let anyone tell you different. I can sympathise with you! It is very hard to try to weigh out other's opinions and get to the root of what is wrong with your child. You know something is not right and others who don't know your child as well as you can not truely understand that. I am struggling as well with getting doctors to listen and truely understand that something is not right with my two year old.. It''s been nearly a year now. So keep at it. At the point you get the tests back you may need to make a choice. It sounds like you have made that choice already to keep your daughter off gluten. Stick to it if that is your decision. Don't let anyone disuade you from that position. I wish you well! Denise
  7. You could try www.pecanbread.com for some gluten free dairy and egg free recipes that are pretty kid friendly. Hope this helps! Denise
  8. There are some good gluten-free and dairy free recipes at www.pecanbread.com and they try to be kid friendly recipes. Try to just stick to plain foods. I got the gluten-free cereal and some cookies to start. I also got a bag of the gluten-free pancake mix. Beyond that I just stuck with plain old home cooked foods. Used corn startch to make gravies, and just watched the ingredient list on this site for anything prepackaged. On the biopsy. I would call your docs office and have them fax the test results to the GI give it a day and call the GI office and make sure they got them, and make sure that doc looks at them. Give them about 6 hours, then call back and see what the doc had to say about those results, and also have them run the question by that doc whether or not they would diagnose celiac with these results+dietary changes and symptom relief. It is difficult to say how much cooperation you will have in the future from other docs, schools day cares etc if you do not have an official diagnosis from the doctor. The biopsy itself is not that bad, we went through one in January for my son (2) its truely harder on us than them, and if you are going to a good children's hospital for this it really shouldn't be that hard on you either. another bit of advice. Keep a food journal.. keep track of the ins and outs so to speak that will also be a valuable tool for the doctor to use. hope this helps. Denise
  9. Does it account for children who have bottles supplemented in their diet? Or are they all exclusively breast fed? I am convinced that the gluten gets through. I noticed a seriously marked change in my own son when I went gluten-free for two months. Now I went back on gluten after he was 6 months old and he seems ok with it now but it has not been introduced directly in his diet till just yesterday in the form of a teething biscut. We will see what results. But man if the green colour from the spinach I eat gets through.. LOL Denise PS Its good to know someone has studied this at least all us mothers don't have any back up so far till now.
  10. Wow~~ we are a chatty group!! Sorry all Welda's name popped out at me!!! Congrats to you all It looks like a great book! Denise
  11. Oh that is wonderful! I am glad that you guys figured out a way to get that blood draw on the youngest. Are you working through a children's hospital? When we took out little guy in for his biopsy the children's hospital was terrific. They showed him everything, got a doctors hat for Dad and a nurses hat for me.. showed him the mask and all.. he's two so I don't know how much he absorbed of all that but it sure helped me! So don't lose too much sleep, ok! I just have to say I am jealous! I wish that my doc had done the blood draw while he was under.. now I am left with a negative biopsy, no blood test and a kid who still is having some troubles.. you are very fortunate! Sara,... I want you to be my doc!!! Denise
  12. I was looking over the contents of a new book on celiac disease and what should I see? Yup Welda wrote a chapter!!!! Go Welda Go Welda!!! This book looks like a keeper! Check it out! http://www.apersonaltouchon.com/index.asp Denise
  13. I have also had bouts of vertigo. I went through a whole slew of tests for menieres... hehe I went throught the tests when I was pregnant.. I have not had any attacks lately, but I sure can relate to Sarah!! I have been several times crawling around on the floor because of an attack and I was pregnant and wanting to fall on the steps. Scary! Right now I am on a regular diet, right along with my little guy. I am back to having all kinds of lovely gas but no vertigo.. I think it does get worse with extra fluid retention in prgnanacy Denise
  14. NeDrz, stick with the basics.. meat fruit and vegetables also cheeses if you can tolerate them. There is alot of variety just among those things if you give it a try! You can do it!!! Denise
  15. We just went through a biopsy with our son in January. It went fine. We did it at a childrens hospital. Ask as many questions that you need to to feel comfortable. Keep a brave face on for your little guy before hand it will help him alot to see you positive. The proceedure should take only about a half an hour, they should put him under completely for it. They do tend to wake up cranky after such a short time under.. I know ours did.. we didn't see him right away as they kept us out a little longer because he was a little wild when he woke up, when we got back there he was sleeping, but he woke up after a bit and perked up pretty quickly.. I chose to think of it this way.. hey think of all the times you can't get that little guy to take a nap.. well hey you will want the anestesiologist to come over every afternoon after this.. easy nap time!!! Ok i'm a little weird.. but it sure helped me from loosing it.. I suprisingly got through tear free.. All kidding aside he should be fine.. and I would advise you to go with the gluten-free diet even if the biopsy comes out negative or even questionable.. with blood work pointing in that direction if there is no damage in there yet you can prevent that damage from ever occuring! And that is a good thing! Denise
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