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 do not have anyone in my family with celiac but I found this website and this forum through a search for "powdered cellulose gluten" and signed up just to reply to this thread. Although I am excited about finding this community too.
My son has 37 food "intolerances" and yes these were confirmed by a doc with an actual lab test. I have some info that may help you and this forum has info that may help me. That's a community right?
Basically it depends on how you define the word allergy. In the last fifty years medicine has narrowed the definition to include only certain types of immune system responses that result in certain symptoms. IgE releases are responsible for "traditional" allergic reactions like hives, excema, rashes and anaphylaxis. Turns out that's not so traditional however. Apparently BEFORE the 1940's or so an allergic reaction was simply defined as an adverse reaction. I like that. Simple and makes sense. If you eat something, have an undesirable effect then you avoid that food. But sometimes it's not so easy to find which food it is.
So to get to the point the name of the test is MRT - mediator release testing. It tests for immune system reactions like IgG, C3, C4, cytokines and histamines. The blood is drawn at the doc's office and fed ex-ed to a lab in Florida. Here's the lab's info:
So there IS a test and there ARE docs who know about it. The doc will have to have a kit for testing in his office and sign the paperwork to send to the lab. Out of pocket cost is $375. You may have to bring this info to your doc and convince him though. Ours was an allergist.
Here is some more info. An allergist named Doris Rapp has written a lot of books on this topic and environmental allergies too. The one that I have read (am reading - it's long) is called "Is this Your Child"
She also has a website
If you google her name there is also a youtube video that shows up of her on the Donahue show in the late 80's
I am surprised too that more people and more docs aren't aware of and testing for this. There are so many lives that can be changed.
AS for my son his reactions are not life threatening. He is not going to keel over and die if he eats a piece of bread. But his quality of life is really affected. The reactions we have seen so far are bright red rash on the cheeks, vomiting (sometimes so severe that he has broken blood vessels under his eyes after vomiting), and increased mucous production. I have also suspected that his reactions are sometimes more behavioral like fatigue and confusion. Just this week he had a reaction which we have narrowed down to trace amounts of wheat and eggs in paprika that my mom used to cook. He was blatantly disobeying instructions just before his cheeks turned red and he vomited. My mom was flabbergasted to watch the whole scene play out in a definite progression. A few days later she was able to ask him what happened. Basically I was telling him to not do something which he repeatedly kept asking to do and then I told him not to ask anymore but he did anyway. My mom wanted to know why he didn't do what he was told. He said that he knew I had told him not to and he knew I was getting upset but he thought that I didn't understand what he was asking. Then he said that it was like he was there but he wasn't really there. He described it like he was a spectator watching the scene from the sidelines. Scary huh?
I understand the point about research being profit driven. But I know we would willingly pay for medicine which would allow him to eat a normal diet and have a normal life.
Originally I was thinking about trying the Gluten-free Casein-free diet. I am so glad we didn't. If we had tried that it wouldn't have worked since there were so many other things on his list. I would have seen no change (or minimal at best) and would have given up thinking this wasn't an issue. I am so grateful for this test. When I wrote the check I really thought I was writing this check for peace of mind. I thought the results would come back and I could tuck it away in the crazy mom file and not worry about it anymore. But we are not crazy. This is very real.