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I know this is off topic and I apologize for posting it here, but I really value the ladies on this board and their experiences, advice, and opinions. I am on a search right now to help my dd and so I wanted to ask here. You may PM me so that the board does not have to have this off topic discussion here. Some of you may know that my dd has been sick since January and we are on the quest to find the answers. Many signs are leading us in the direction of celiac disease right now. She has had the blood tests for it and we will be waiting for about another week to find out the results. Do any of you have a child with celiac or have it yourself? If so, I would love to hear from you - how you were diagnosed and what your life is like now. She may not have this, but it certainly seems like she does based on all that has been happening over the last several months. Thank you for your help!

I have a niece with Celiac disease. She is a healthy happy 10 year old. She cannot eat anything with any form of wheat or modified food starch so cookies, bread, etc. are out. but she knows what she can't eat and if in doubt, she'll bring us the package and ask us to check it. She goes to special camps for Celiac disease so she can do camp without worrying about looking different. Otherwise, life is pretty normal.

My first post so didn't see the private mail thing yet but please feel free to PM to me (or email if that somehow works?).

Our eldest *probably* has celiac. He had all the symptoms but he was so young at the time (3 years old) and so small that the doctor's had us eliminate gluten to see what happened before doing anything invasive. I don't recall anything about an option of blood tests at the time; it was going to be through endoscopy and that would mean full anasthesia and so forth so they wanted to delay that if possible. He had immediate benefits! Noticeable, undeniable benefits for going off all gluten.

Five years later we're still gluten-free. We're also dairy- and soy-free (they sometimes follow when one goes gluten-free). And all sorts of other things "free" unrelated. Both boys are being treated for allergies this year and we've made huge progress but we're used to doing without a lot of food choices. There are more and more things that are gluten-free at the market but many of the prefab items are expensive so we mostly cook from scratch. If she has no other allergies there's tons of options for you!

At any rate, I'd be glad to talk to you more about this! We can talk "off the boards" if you want and I can give you more details on what we eat and what we've run into with his health and so forth.

I don't have Celiac or have child with it, but I my best friend was diagnosed with it about 2 years ago. From her experience of not finding out about her condition until she was an adult I can say that you want to find out if this is in deed the problem and make the necessary diet changes as soon as possible. Because Celiac causes the body to not process these certain foods the body becomes malnourished, the intestines can become damaged and there can more be more medical problems, some life threatening. I don't share this with you to frighten you, but to inform. My dear friend suffered for years with many physical ailments, including infertility due to that fact she was not probably diagnosed with Celiac's. She has been on a gluten-soy-dairy free diet now for almost two years and she has been healthy and can enjoy life much more. There are more and more foods that are free of all these things. She is so sensitive that she noticed digestive problems after chewing a different type of gum than her normal brand, this brand had soy lecithin and the tiny amount found in just one piece caused her to be sick for an entire day. May God be with you and your child's doctor as you uncover what is ailing her.

Nancy definitely had some important things in her post. My niece was adopted from the Ukraine at the age of 3. They had just diagnosed her Celiac disease. She had not been able to process the food at the orphanage so she was the size of a 1 year old and unable to walk. After bringing her to the states and putting her on a proper gluten free diet, she is now the normal healthy 10 year old. Proper diagnosis is key!

My younger brother (age 5) has celiac and my husband is on a gluten and dairy free diet as he has Crohn's Disease. I find the following sites helpful in cooking:

www.glutenfreecookingschool.com
www.celiac.com

Hello! My Uncle, Aunt, and Cousin (all blood related) all have Celiac Disease. My Uncle had it for years before they even knew what it was and was constantly going through tests/ treatments. One of the things he and his Dr's insist on is that if you are at all certain Celiac is a possibility, get the scope. The blood tests are extremely unreliable. My Cousin (his daughter) was given the blood test and it came back negative for Celiac. She continued to have problems and they insisted on scoping her for the disease. Sure enough, she had Celiac, but the blood test was a false negative. If you feel that's too invasive (totally understandable), do what another poster recommended and go on a Celiac diet with Dr supervision. I know parents that have done this with fantastic results.
Blessings!
Dorinda

Thank you all so much for your responses. We hope to have the blood results later this week. My dd was actually tested for this in 2005 when she was 7 and the results were negative. But I feel almost certain that she has this. She has so many of the symptoms. We are so anxious to get her healthy again. It has been so hard to watch her get sicker and sicker and not be able to help her and all the doctors saying it is a virus and she will recover. I know it will be a hard diagnosis to live with, but at least she can LIVE with it and feel good again. I will most likely PM some of you for further information once we see exactly where to go from here. If the blood tests are negative, I am leaning strongly toward asking for the scope anyway, even though I don't want her to have to go through that. I appreciate your prayers for us this week and for an accurate blood result. Thank you all so much.

Tiffini,

I just wanted you to know that I am thinking of you and I will keep your family/daughter in my prayers today/tonight/tomorrow...

I know how hard it is to see your child going through this.
Earlier this year we went through some health issues with my daughter and I felt so afraid and hopeless at times.
I completely poured my heart out to God (ugly, uncontrollable cries and all!), and He came through with flying colors as uaual.
Remember to place your burden on Him completely and totally, He cares so very much!

Candice

Tiffini,

Just to encourage you, my oldest son had a scope to check for Celiac's disease among other things as well. The procedure is not a major one, although they do put them under to do it. My son was fairly healthy at the time of the scope and recovered quickly. Your doctor will know best whether this is a needed procedure, however I would also encourage you to see a gastrointerologist if you haven't already. Our pediatrician directed us to ours, and it has made a huge difference in my confidence that we have my son on the right path. He ended up with reflux among other things, but we are treating him and he is so much healthier and happier. I will pray for your sweet daughter.

Blessings,
Carrie