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
I don't really get sick from gluten noticeably and neither does my nephew any more. I am an asymptomatic celiac diagnosed with bloodwork and biopsy. My nephew now 10 was diagnosed at 3 and doesn't really have a such a strong reaction. My daughter who is 15 though it's like she has food poisoning when she gets a little, so she doesn't sneak. I'll try to get my mom to replace the wooden spoons and cutting boards... that sounds like it may be the culprit... my mom doesn't buy anything with gluten so there's not any around. She does get gluten free oats and maybe that might be it. I think some people react to oats who have celiac. Is there a way to check for that?
My mom tries really hard to not allow gluten into her kitchen as I, my daughter and nephew all have celiac. However, for the third or fourth time this year my daughter has gotten very sick from gluten from a meal my mom prepared. None of us can think of what it might be? Any suggestions? Could it be something else?
The Childrens Hospital celiac support group posted this article a while ageo: http://www.sciencedaily.com/releases/2014/01/140113154219.htm
"A new blood test being developed by Walter and Eliza Hall Institute researchers can rapidly and accurately diagnose celiac disease without the need for prolonged gluten exposure."
Anyways, if your child is really sick from gluten perhaps you can wait to test for a while. My sister was able to get a diagnosis based solely on my nephew's reaction to the gluten-free diet and positive bloodwork.
I have "silent" celiac and am IgA deficient. My doctor misread my tests 4 years ago when I asked to be tested after my daughter was diagnosed in 2009. I asked her to check again a year ago and the IgG was positive - the rest she thought were normal. After she called and wasn't sure what that meant since IgG is non-specific, I decided to go to the celiac clinic at Beth Israel where they followed up with the anti-DGP test. This is what they told me (I think). If IgA is low then the TtG test is useless since TtG is a type of IgA. The IgG is non-specific to celiac, but IgG high combined with IgA defficiency is indicative of celiac since celiac can cause IgA deficiency... The anti-DGP is less sensitive but highly specific. If DgP is positive then you have celiac 99% of the time. Anyways, the lesson is that regular doctors can be very confused by lab results. Even the specialists were confused by the results from the primary physicians labs bc they used non-standard notation and failed to flag the very, very low IgA as abnormal which is why my doctor wasn't aware this made the low TtG useless. The doctors had to contact the lab to interpret the results from the tests my primary doctor gave. The GI/celiac specialist says doctors often misinterpret results. Anyways, anti-DgP was positive and biopsy positive.
Another thought. I think often some adults tend to over-react. I'd add something about maintaining X's privacy and not singling her out. We had some phrase like that in our 504. When my daughter was younger teachers would sometimes send her to sit off in a corner or announce to the class that Y's mom brought pizza but because A has celiac and it's not gluten free we can't eat it.
Also, the Children Hospital Boston has a pretty good page on this:
My daughter went to camp celiac for a week in Rhode Island. I think registration starts in Feb. She really liked meeting other kids with celiac and it made her more sure of herself. It's pretty much a regular camp other than everyone has celiac.
My husband took me to Paris recently and there were plenty of places there to eat out and the shops had lots of both fresh and packaged gluten free food. Any health food store carries stuff. There was one restaurant that is entirely gluten-free called noglu. There was another nice restaurant that the chef had celiac and it was amazing. The French do gluten free so don't worry too much and labels usually identify if there's gluten.
I was recently diagnosed with celiac after my doctor misread my lab results. I was tested 4 years ago when my daughter was first diagnosed and my doctor incorrectly interpreted the lab results as negative. My IGA was very, very low. I had a followup lab 4 years at a checkup that showed something but the doctor wasn't sure what it meant. I went to a celiac doctor at Beth Israel celiac center who called the lab because she had given me non-standard tests. It turned out that I am IGA deficient and that negates the other negative results. He said a percentage of people with celiac are IGA deficient. They did another test and I think the test was called Anti-DGP and that was positive and then the biopsy was positive. The specialists advice is that many doctors and labs misinterpret results. It's good to work with someone who understands the different types of tests for celiac and what to look for. I think a lot of labs aren't all that sure either and that surprised me too. If the ped GI is not helpful then get someone else. We went to 3 ped GI's before there was someone nice that we could work with.
I really don't believe in "stool withholding". If the system isn't working somethings going wrong.
I also have a friend who has celiac and her daughter has non-celiac gluten intolerance.
My daughter (14.5 with celiac) was recently found to be very anemic. Her pediatrician did some preliminary blood work which showed her counts were very low and then followed up with many tests to determine the cause and checked for things like clotting problems. She made sure it was iron defficiency anemia before asking her to take iron supplement. We did follow up bloodwork a month after the initial diagnosis to make sure it was improving and it is. She takes the iron with meals. It sounds very strange that they wouldn't do further tests and determine the cause or ask you to make a followup appointment.
We went to a wedding in early June. Both me and my daughter (age 14) have celiac. She was glutened at the rehearsal dinner that I did not attend. She was with her grandparents who asked several times if the meal was gluten-free and the waiter kept saying yes. I think they confused gluten-free with vegetarian. She spent hours vomiting from about 1 am to 5 am. At the reception the caterer was rather brusque and assured me the meal was gluten-free. However it was chaotic in that they brought the food to the event from elsewhere and there was bread everywhere. I ended up deciding to push the food around my plate rather than risk it. We have generally good experiences at restaurants where the food is cooked for you when you order. However, caterers make all the food at once and then plate it and often hire untrained (in food safety) waiters such as college students.
I suggest that you bring your own food or I prefer just to eat before or after. It's definitely just a meal and it's not worth hours or days of misery.
You can drink wine and be social.
My thought is that cable news is really entertainment. Of course fox or msnbc has some truth but both stations seem very slanted and give partial truth. The more scandal the better. The internet has a lot of misinformation too. In Massachusetts where I live we've had what used to be called Romney Care that the affordable care act is based on. It means everyone must have insurance - when you fill out your state taxes you either pay a small fine or there's a form your health insurer sends that you enter when you file state taxes. I believe it's been pretty successful and something Mitt Romney probably should be proud of. It means that in MA your insurance can no longer be cancelled while your in the ambulance on the way to the hospital as is what happened to our neighbor's son before Romney care. I think it also means that hospitals can not hound you if you don't pay. If you do an internet search on Romney Care there are tons of articles both positive and negative from the last election. None of us can control exactly if we get in an accident or get some disease that cost millions to treat.
it was enacted about 5 years ago and it makes it much easier to eat out. WIthin it are rules for training staff and providing safe food. As a result there are a lot of resources/training on setting up restaurants to deal with allergies in Massachusetts.
The thing to tell the friend is that first it's not too hard to accomodate this and second it will bring in a lot of new customers because a group would with one celiac/food allergic person would choose a restaurant their friend could eat at.
Most eating places now have all the staff trained and have procedures. Like in an ice cream place they change gloves and get toppings out from the bins below. They have systems like color coding the gluten free plates nad having the manager bring the food directly from the chef.
Here are some sample gluten free menus and restaurants with policies. Look at their gluten free menus and they describe how the protect from x-contamination.