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Posts posted by leecindy417

  1. Wow! Thank you so much for all the information. What a help. It's the little things you can't really research on the computer that bug me. Like the toaster, peanut butter, jelly, etc all being separate. I really thought maybe someone could be a little bit celiac so it is good to know that is not the case. If you think of anything else you want to add please feel free to email me anytime. The more information I have the better. After our meeting with the pediatric GI doctor this Monday I am hoping to have more answers from him as well and begin the diet once and for all. Thank you again.

    There is no such thing as a little celiac. My daughter doesn't always have symptoms and it is hard for us to tell when or what got her as she doesn't have an immediate response. I have found that the longer she is gluten free, it takes less to show a reaction and the reaction tends to be more severe. You may find this to be the case with your little guy as well.

    You will need to keep him as gluten free as possible. We do have a mixed kitchen in our house, but some families choose to have their kitchen completely gluten free. To do this, we try to keep one counter for gluten free foods only. I also keep a set of wooden spoons and a strainer that are kept free of gluten. She also has a shelf in our pantry for her foods. He will need his own toaster (I bought a cheap one for under $10 at Walmart that works well enough), and I was able to purchase bread bags in case she goes to a relatives and wants her toast.

    You should also keep a dedicated tub of margarine, jelly, peanut butter, etc. as these containers tend to collect bread crumbs easily. I mark all of these with a green sticker so everyone knows, I use these for cooking her meals to make sure it is kept safe.

    If you are wondering about which foods are safe, I would start with a natural foods store to start. Their staff is usually knowledgeable and they tend to have a bit more of a selection. Once you have a handle on reading labels, then venture out a little more. Also starting with fresh foods and meat is a good way to get going.

    Lastly, I would suggest joining your local Celiac group if there is one. Ours had a ton of information to hand out when we joined and the information was invaluable. There is also the opportunity for the kids to get to know each other with things like Christmas parties and summer camps.

    Hang in there, it does get easier.

  2. Thank you so much for the reply. I will definitely try the web sites you suggested as well as the nutritionist. I did find it odd that our pediatric GI doctor never recommended a nutritionist. To tell you the truth I would change doctors if I could but he is the only one in the area. We live about ten minutes outside Albany, NY and Albany Medical Center is a hopsital known for its great reputation. He preactices out of Albany Medical Center. This guy called me with the biopsy results said to do a gluten free diet and he would mail me a packet of information. I waited for the packet before starting the diet figuring it would have useful information. It was a print out of a web site I had already been to! There was never even follow up scheduled. My husband and I now have a meeting scheduled with him for Monday to get more answers. The next closest pediatric GI doctor is Boston, MA. which is a five hour drive for us not to mention the wait to even get in to see one of the doctors there.

    Try one of the celiac centers at a children's hospital. There are several around the country.


    This one has lots of resources. You can order a DVD or watch the videos online. They also have good resources for school.


    We went to a nutritionist at our hospital where they have a celiac class that was about an hour long. Then more recently we went back to learn how to get better nutrition and more fiber on a gluten-free diet. You may want to look for a pediatric GI doctor who specializes in celiac. The ones that don't seem to have outdated and inaccurate information.

    As far as I know there is no such thing as a little celiac.

    Oh and I found getting a book about celiac and kids super helpful. If you search there are many. I liked the one by Dana Korn.

  3. Okay. So you mentioned cross contamination. Is there such a thing as having a little gluten allergy or a little celiac disease? The reason I am asking is because my son was recently diagnosed and has symptoms but they are not always present. Can I still toast his gluten free bread in the family toaster? Does he need his own butter? What if we did the gluten free diet but maybe are not as strict with it? Is gluten free the same as wheat free? Can anyone recommend a place I can go to get all my questions answered? I have so many. Thank you so much.

  4. No silly questions here.

    We don't purposly let them have gluten. All of my daughter's issues come from cross-contamination or the rare bone headed move on my part.

    Although we try our best, I think it's inevitable to get glutened once in a while. You can't beat yourself up about it, it happens to anyone who takes the chance to eat anything. Once it does, you just to plug your way through it.

    Welcome to the board, you will find alot of great advice here.

    Thanks again to everyone else for your suggestions.

  5. I am so new to all this and completely lost. If the doctor believes it to be celiac disease why would he put him a on gluten free diet? You are telling me celiac is not an allergy to gluten. Why the diet then? The biopsy showed acute and chronic inflammatory cells that he did not pick up on during the procedure and supposedly are not supportive of a celiac diagnosis. Could it be something else they are missing?

    Celiac disease is not an allergy to gluten. Damage to the intestines is caused by the autoimmune response. An allergy to wheat occurs independently of celiac disease. You can have one without the other, both, or neither one.

    False negatives on the biopsy are fairly common, especially in chldren. The damage may be patchy and only healthy samples might be taken. Or the disease may not have progressed enough for there to be detectable damage yet.

    I'm not sure if this will help.

  6. I was under the impression the villi had to show signs of damage in order for there to be a gluten allergy. Is that not the case?

    There are many people who have slightly elevated bloodwork and biopsies that are either negative or just unclear for celiac disease, who respond positively to the gluten free diet. It is sometimes never clear whether these people have celiac disease or not. Often times, the doctor will eventually diagnose the case as celiac disease if there is significant improvement following diet.

    Gluten is generally tough on people with bad stomachs, whether or not they have celiac.

  7. I am new to all of this so please forgive me if I come across the wrong way.

    If you know your child has a gluten allergy and you know what the consequences are going to be then why do you allow them to have it?

    My son was recently diagnosed so you will most likely see me on here asking pretty silly questions. Thanks for understanding.

  8. Hello. My eight year old son has had some issues with not being able to hold bowel movements. If we are out and about and he has to go I have a two minute window to find a bathroom for him. If we are not able to get there quickly he has accidents. We went to a pediatric GI doctor who did some blood work. He said the one test came back normal while the other test also came back normal but higher then he would have liked to see. He then did a small intestine biopsy. To this he said: The biopsy looked normal but there are chronic and acute inflammatory cells that he should have been able to see during the biopsy but could not. He also said this usually is not present in celiac disease. After telling me this he then said we are going to treat it as celiac and go on a gluten free diet. Can anyone tell me if they have had similar findings in their biopsy? I would take him for a second opinion but the only other pediatric GI doctor is in his office and not available for six months. Please let me know what you think about this. One more thing. About two months ago my son was doubled over in pain or currled up in the fetal position and puking a yellowish bile. This lasted about four hours - at home, in the car, on the way to the doctor, in the doctors office, on the way to the hospital and while in the waiting room in the hospital. The pediatrician sent us to the hospital and was under the impression he had blockage in his bowel because he could not hear movement. When they put him on the table to do the ultrasound something happen and he was absoltutely fine. They found nothing wrong.

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