This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Get the book Gluten free living for Dummies and send it to her. Also is there a local group in her area? I am a member of the Alamo Celiac here in Texas and for a $20 annual fee I get monthly newsletters with a ton of information and great info at that? Maybe that's the way to go.
I'd also suggest she meet with a GI doctor that knows a lot about Celiac and have them explain it all to her.
Here is the e-mail I sent out to my family and friends when my daughter was diagnosed at 18 months:
"Here is the technical mumbo-jumbo:
When anyone (even people without Celiac disease) eats gluten containing products it causes our bodies to produce an excess amount of zonulin. (A protein found in our small intestine that basically works as a doorman allowing the nutrients of our food to pass into the bloodstream) You heard me right.. EVERY person on earth produces too much zonulin when they eat gluten! Having too much zonulin opens so many ..doors.. that toxins (gluten fragments) get into our blood stream that normally wouldn't have been allowed in.
This is where my daughter's body acts differently than ours does. Her body sees these gluten fragments as invaders and it launches and attack against them.. the problem is her body also attacks itself (the autoimmune part of this Celiac) She produces antibodies ant react against normal, healthy tissue rather than the bad stuff.
Her body attacks the villi (the little finger things on our intestines that help absorb nutrients) on the lining of the small intestine causing them to flatten (really they are chopped down like a tree). If they have been chopped they are no longer able to absorb nutrients from her food. The damage always happens at the top of the intestine first.
Remember that her small intestine is about 3.5 times longer than she is (so about 10+ feet) So by the time she was showing symptoms and losing weight, her entire intestine had been damaged.
Anyhow the villi do repair themselves once you have switched to a gluten free diet. It takes 1-12 months for adults and with kids it..s a much faster recovery.
When my daughter was diagnosed less than one month after showing symptoms she was already malnourished, dehydrated, and anemic, things could have been much worse for her if we had not caught this and treated it right away!
Now you all know what Celiac disease is!"
I took a lot of it from the book Gluten Free Living for Dummies but if it helps use it
My daughter is now 4. She was diagnosed at 18 months old. I can tell you that the first month was stressful because of the huge learning curve but since then its been a breeze I was actually watching my daughter the other day munching down on a super juicy plum and some cheese while other kids were eating ritz crackers and peanut butter and I realized what a gift celiac disease has been to her... she is such a good eater
Every year we celebrate her gluten free "birthday" so to speak. I make a gluten-free cake or pie and we have a nice dinner and she even blows out candles. I focus on the celebration of being healthy and feeling good and instead of making this something that "happened to her" I made it something that she is proud of
Knowing what I know today (and I know this sound strange) I might start by telling your daughter with a Gluten free Family party. With a good dinner and some fun activities This way it feels like something good instead of something bad. After all it is a good thing she knows, now you guys can work toward being healthy and pain free!
As far as the hospitals go.... you could always opt out and just treat it like celiac disease. If my son ever shows symptoms I'm not going to have the endoscopy done and if I ahd to do it all over again I wouldn't have had my daughters done either.
Finding out if celiac disease is a possibility in the future of a child can dramatically change the course a parent takes with said child. As in our case because of this information we have chosen not to give him gluten for the foreseeable future. I do not consider this "Overusing my insurance" by any means.
I'm not so much of an expert but I can tell you that I followed the American Pediatric guidelines for my daughter and introduced gluten grains around 6 months of age.... she developed celaic when she was 18 months.
My son is now 6 months old and he has the genetic marker for celiac disease. Because of this we are keeping him gluten free for the foreseeable future, there may be a day down the road that he chooses to test the gluten waters but it will be his choice. The new studies suggest that waiting unilt after 1 year old to children "at risk" of celiac either dramatically delays the onset or possibly prevents the disease all together.
I exclusively breast fed my son until 6 months old I was gluten free for about 1 month to see if that helped with his reflux but it did nothing so I am back on gluten.
There is a new study that took infants who had 1st degree relatives with celiac disease and 1/2 of them were given gluten at the recommended age of 6 months and the other 1/2 were not given any gluten until after they had turned 1 year old. 100% of the children who did not get gluten until after 1 year old have not developed celiac disease yet (I say yet because as we know it can 'turn on' at any time) but the idea is that delaying the introduction to gluten can either delay the onset of celiac disease or possibly prevent it. (something like 40-60% of the kids who were given gluten before 1 year developed the disease according to the study) I'm looking for it now it was in my Alamo Celiac newsletter.
My 4 year old daughter was diagnosed at 18 months and she has been gluten free ever since. I now have a 6 month old boy who carries one of the genes for Celiac Disease and puts him at a 40% chance of developing it some day (ant a 60% chance of him not). We have chosen to keep him gluten free until he requests something different, at that point in time we will decide what to do. I figgure at least this way if he does ever develop it he will have grown up with gluten free foods so it wont be a major change for him. His pediatrician is all for waiting till he requests something different.
There is a new study out that took children who had 1st degree relatives with Celiac disease and introduced 1/2 of them to gluten at 4-6 months just as recommended and the other kids were not introduced to gluten until after their 1st birthday.
Some of the kids that were introduced to gluten at 4-6 months have developed Celiac Disease
100% of those who waited have not yet developed Celiac Disease.
So it looks like delaying introduction will at least delay the onset of Celiac Disese and may even prevent it (but the jury is still out on that the study is new and needs years more to come up with those answers).
As for me I have a 4 month old and I am not going to introduce gluten at all. We are gluten free at home and I don't plan on making special stuff just for him.