Celiac Disease...

Loraie - posted on 02/07/2009

Thats a really good idea about the medical note from the doctor, I find the school seems almost annoyed and inconvienced by me picking Lily up for appts with dietician, pediatrician, other tests, etc. and then they sometimes dont ring me when she is in pain in the sick room. As if its all going to get better quick. But I understand she cannot be sent home everyday, yet what we need most are people (teachers and school) to work with us, and it just hasnt seemed that way. I even offered to bring gluten free cupcakes for the class to have on the Valentines party, and was met with the question' why do the other kids need that' which in turn was not just about the other kids but Lily sharing something new and not feeling singled out.  Understanding is something I now know not everyone can do! I am lucky the teacher has been warm and caring towards her new condition, but almost as if its a nuisance for Lilys school year. In reality this is a life long issue, so it just may effect every school year- which I will strive that it doesnt! Thanks for all the sharing and advice, I wish all of you a smooth ride with your childrens ailments and challenges, as I feel stronger that I can get through this just sharing and reading others posts.

April - posted on 01/23/2009

Yes it was but at that point I knew he did not really need it and it was something we cold rule out as being a problem. So the Dr would not stop looking and say well... his gallbladder his gallbladder. But like I said I think it was the best thing we did because now he is leading a normal life. I could not say that before. He was on so many different diets and lost so much weight (and is a skinny kids as is so was not good),and he was in pain all the time. Coming home from school all the time. Yes the schools can be a bother but I took a note from his Dr. like children do with Diabetes and then I did not have to send a note or take him to the Dr. every time he was out sick. and was much easier. Note just said he had some medical problems that causes him to need to go to the restroom more often and eat certain foods and many be out from time to time due to being to sick or in pain to come to school. The teacher would send work home with neighbor and the school the noticed the severity of it.

Sandra - posted on 01/22/2009

My son is on the Glutten free diet (wheat free) and I know how hard it is at the beginning to manage it, please feel free to ask for help. I will be happy to send you some easy receipes and tips. Support from others is what makes it manageable for you and your child.

Loraie - posted on 01/22/2009

wow, it can get so time consuming and stressful, as it really affects the childs learning when they are in constant discomfort. Sometimes I feel as though the school is not understanding to any of it. As they see it as more of an inconvienence. We have a dietitian whom we have not met yet, but sounds like she is only there to make me aware of where to find Gluten foods and give me some fliers. I will ask heaps of questions and do follow ups of course, I am a take part mother who is ok without answers!!!! This is how I finally found out. So that must have been the hardest decision ever to have his gallbladder removed, I found in very difficult to keep Lilys stool soft, as she didnt go to the washroom everyday, and that wasnt helping either.  Perhaps the celiac test wont show up until hes older, as I heard it can come on later,  Ive also heard people being diagnosed with it, and then being able to go back to eating Gluten, but I dont believe that they actually had it in the first place then. Wierd.

April - posted on 01/21/2009

My so went through all that but tested negative for the Celiacs and was tested for Crohn's and everything under the sun he hissed almost 1/2 of his kindergarten year. So finally they tested his gallbladder they said it was not emptying, but as long as he had to go with out eating they said it could cause that result as well. So we had a decision to make. We had his gallbladder taken out. All most all problems stopped. Sometime he still get constipated but we usually can control it with apple juice and stuff like that. If he heats lots of pop corn or like a tone of rolls he will still get sick but not as bad and not as often. So some time I wonder if he has the Celiacs as well. But for the mean time we can control it and it is very far and few between.

Amanda - posted on 01/20/2009

I would recommend seeing a Registered Dietitian. A dietitian can give you ideas to ease your daughter into these changes and help you create a healthy menu for your daughter to gain weight. If you want to find a dietitian in your area try www.eatright.org this is the site for the American Dietetic Association.

Loraie - posted on 01/20/2009

Wow, its unfortunate that anyone has to go thru this, I always easily excepted my own lactose intolerance for ten years now. And since I had my girls I have become allergic to certain nuts. I guess I never expected my kids to have these either. I had a doctor at a drop in clinic by chance ask if my 3 year old had allergies, and then after checking my sinuses and breathing said I may have more then I realise!!! I just wouldnt have thought so. Now that I know about my daughter having celiac disease everyone in my exes family and in mine are denying it runs in the family, yet how would they know if no ones been tested. I am going to be requesting more tests to be done on top of Lilys gluten allergy, and with that, may just do so with my younger daughter and I to be sure!!! Im learning so much and appreciate all of the info, its all great advice. I am enjoying the new meals we are having and my daughter has been very positive about trying new foods. Its all going well. All the best to allergy sufferers out there:)

Nicola - posted on 01/20/2009

hi my name is nicola reynolds.Iam 37 years old and have been on a gluten free diet since i was 1year and 10 months .once you stick to a glutenfree diet she will start to gain waight not much but she should fit into the dr average waight chart.you should get any other children tested as it can be hereoderty as well as you and your partener .

good luck

nicola

Kristina - posted on 01/20/2009

The doctors thought i had  celiac disease. and all they did was a blodd test. but i found out from another doctor that  they cant fully diagnose it until they do a blood test AND a internal exam of the intestines (which includes taking a piece of the rectum and the intestine to do a biopsy). which i had done and it turned out that i did not have the disease, that i was just developing psorasiss. (a skin condition that looks like eczema) if your daughter is still having all of  these problems i would take her to a dermatoligist and see about the skin, cause i also had the skin problems and the thinning of the hair. until i got pregant again i was very small for my age. i was only 80 pounds at 22. but that was becasue i was very active, and 6 year olds tend to be very active, so the petiteness could be something totally different.

if you are concerned i would get a different opinion. because doctors do not know everything eventhough they would like to pretend they do.

Carolyn - posted on 01/20/2009

Both of my children and myself are celiac and have been gluten free for years. There are a lot of resources out there and so many more food choices then even 10 years ago. What area are you in? There is a really great bakery in London ON that is 100 % gluten free. If you are interested check them out. THe name is Jubilee Kafe, they are on South street in London near the old South St hospital. My kids love the new things they can eat from there.

Patty - posted on 01/19/2009

My daughter had skin rashes on the back of her legs that would not go away. I was diagnosed with food allergies several months ago so we took her to my naturopath and did the test. We just got the results today. We have several friends who have been gluten free for some time and I have been dairy free myself for over six months. I am lucky to have such great friends that they are willing to help. It will be an adjustment and I can see that it will be hardest for her at school when there are events. But she is excited and we are going to encourage that!

Loraie - posted on 01/19/2009

thanks for the the blog address, I will definetly check it out! I hope that everyone out there dealing with allergies checks out all their options, there seems to be alot more than I ever would have realised, always grateful for those who reach out....Thanks to all.

Loraie - posted on 01/19/2009

wow, thats alot to be allergic to, dairy on top of gluten! It has been overwhelming, finding out what is in everything, where to start with new foods, etc. I found that Lily (my daughter) reacted well with the news, and talks alot about all the different foods she is trying out. Its amazing how much information Ive come across, and heaps of people reaching out.That helps the whole transition, as Lily has had mixed feelings about not being able to have certain foods at events. I am so excited about her dermetitis disappearing almost instantly, along with her hair coming in much thicker and healthier, meaning she is now digesting her nutrients. The turn around has been huge int he past month!  Has your daughter had symptoms... Lily has told me that its easier at school now as well. Hope its an easy transition, Ive found that my 3 year old and I have been eating so much healthier and less of the stuff thats not good for you:)

Patty - posted on 01/19/2009

My six year old daughter was diagnosed today with peanut, gluten and dairy allergies. My husband and I have been talking with her about how it will be fun to try new things and she is excited. I am hopeful for how this will go. There are so many resources out there and I am just a little overwhelmed with where to start. But there are lots of options now in every store and we are ready to make this change as a family.  Best of luck!

Trisha - posted on 01/19/2009

How is she feeling now?  If you need any help with feeding a wheat-free child check out my blog at 

http://funkyfoodallergies.blogspot.com/

Plus there is a great recipe for a super smoothie that could help with weight gain, helping her gain back some vitamin and mineral stores and just plain yummy.

It sucks that it takes doctors so long to listen to moms.  Have you and she been sleeping better since going wheat free?  Hang in there.

Trisha

Trisha - posted on 01/19/2009

How is she feeling now?  If you need any help with feeding a wheat-free child check out my blog at 

http://funkyfoodallergies.blogspot.com/

Plus there is a great recipe for a super smoothie that could help with weight gain, helping her gain back some vitamin and mineral stores and just plain yummy.

It sucks that it takes doctors so long to listen to moms.  Have you and she been sleeping better since going wheat free?  Hang in there.

Trisha

Juliana - posted on 01/19/2009

wow going through all that is so stressful! My mom has it and I am about to get tested for it myself :( we shall see....I have been ging to the doc for 10 years trying to get answers