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
Research has shown that you can be Gluten Insenitive/intolerant and never develop Celiac Disease. The Intestine requires the Gene DQ2 or DQ 8 to be present for you to be diagnosed with Celiac disease, as it is an auto immune disease, not an extension of an intolerance.
You either have Celiac or you don't it is not a case of different degrees. Kind of like being a little bit pregnant, you either are or you are not.
Many people have positive bloods yet there is not evidence of Celiac disease in the gut on biopsy, I guess this would indicate and intolerance.
A great resource for further clarification here in the Center for Celiac research in Maryland. these guys are considered the experts in the field of diagnosis and research etc. they have some great reading etc.
Try and keep your chin up.
A Gliadin IGa positive does not constitute a Celiac diagnosis. I am Iga Pos and so is one of my sons neither of us are Celiac. Did they test his Ttg level this is far more appropriate for diagnosis.
Also the biopsy is far better that just this test to tell. I say be 100% sure before making major lifestyle changes. Also he should not go Gluten free until all the tests are done as it will effect the results.
I went through the greiving when Grace was diagnosed (by very Pos biopsy in Sept 03) and I still have crappy days. But hey she is so much healthier and happier it far out weighs me feeling sorry and sad.
Good luck with the further testing.
Ah probably another difference in protocols in different countries. I used to nurse in Theatres and we did endoscopes regularly. In Australia and NZ rarely we put people on Fluid only etc, Usually just the usual Nil By Mouth for 8-12 hours.
Thanks for your reply, I was just curious cause sometimes the preparations for the tests are quiet difficult and traumatic for kids and it would be nice if the preps were as simple as possible.
Why the fluid only diet? I would have thought this could sway the results. Grace was NBM (Nil Orally) for 8 hours before surgery but was encouraged to be on a diet containing Gluten up until her biopsy.
I hope they find an answer for you as having a sick child is very debilitating for your spirit as a parent.
The simple answer is that you need to eliminate all Gluten. If your husband is having trouble believing than tell him the possible implications of continuing on Gluten.
For example, infertility and intestinal cancers. Whenever I feel it is too hard I remind myself of this.
I certainly do not want to sit Grace down one day and say "Sorry sweet but maybe the reason you cannot get pregnant/you have cancer is because the Gluten free diet was too hard, so we kept feeding you Gluten". Very harsh and in your face but that is the reality of Celiac Disease.
Please for your childs sake educate your husband and eliminate Gluten from the diet.
I have recently read a speech by Professor Alessio Fasano, who is the Director for the Centre for Celiac Research in Maryland. That states emphatically that you cannot develop Celiac Disease unless you do carry the DQ2 or DQ8 gene.
So that leads me to believe that Celiac Disease and Gluten Intolerance/Sensitivity are 2 different things however the treatment for each is the same a Gluten Free diet. The absence of the DQ2 or DQ8 gene would indicate that you cannot go on to develop Celiac Disease, however to remain healthy and symptom free than a gluten-free diet is also the treatment for intolerance.
P.S: I hope I have not trodden on any toes here but I am just quoting from sources and will happily try and track down further reasearch on the DQ2 and DQ8 genes.
We are not seeing a specialist with Grace, just her Ped. He will retest her bloods to check her levels every 12 months or so. Fortunately the only treatment is the gluten-free diet, so if you have a good endo for the Diabetes that should be fine.
I have been told it is genetic and carried on the same chromosome as Diabetes.
A person can carry the celiac gene yet not develop the disease. It is not know what can trigger a person to develop Celiac Disease.
Some schools of though are attributing it to the increase of Grains in the human diet over years and that we now eat alot more than previous generations. I tend to agree with this.
Grace was diagnosed at 9 years but in hindsight (ahh a wonderful thing, LOL) I feel she has been Celiac since she was a baby.
I have had our whole family tested after Graces diagnosis and so far no-one else has Celiac disease. However I am mindful of the possible signs and will have myself and others in the family retestd as needed. Because one of us could develop it further down the track.
I hope this helps.
What a great post Molly, Thankyou.
We have decided that Grace wont have another biopsy for quiet sometime as the first one was so obviously positive of Intestinal damage. She will have bloods retested in 12 months (18months after diagnosis).
I am lucky that she was so easily diagnoses and we don't need to have continual testing wtc.
I will be sure to ask you any questions Molly, it is a wonderful offer from you and so nice to have the opinion and perspective of a younger celiac.
You are not ranting at all, I understand your frustration completely. Myself and 1 son have shown a slight elevation in one of the blood tests but not enough to indicate further testing or going gluten-free. Niether of us are symptomatic, he is 5. So I have opted to play the waiting game. I will have bloods done in 12 months on both of us if we remain asymptomatic.
These new tests are not an option for us as we are in New Zealand and I am not waware if these tests are available here. I will look into it however.
Hi, My name is Wendy. I have a 9 year old daughter, Grace, who was diagnosed in September last year with Celiac Disease after bloods and biopsy both returned strong positive with alot of intestinal damage.
We live in New Zealand, and I am looking forward to learning from other parents of celiac kids. All our family have been tested and So far Grace is the only Celiac out of 5 of us. She is coping well with the change in diet and thriving wonderfully. gone from 25% in height to 50% + in 6 months.
Look forward to getting to know you all.
I am of the understanding that you can have positve bloods but negative biopsy, and I have been led to believe that Biopsy is 100% gold standard. As Flattened Damaged villi is the result of Celiac Disease (auto immune response) as opposed to gluten intolerance which causes illness/upsets but not an autoimmune response. My daughter had a positive biopsy last september after positive blood tests.
Alot of people go to the biopsy after going Gluten Free, this negates the test completely. You must be on a gluten diet to have an accurate biopsy result. It is suggested at least 6 weeks of a diet containing gluten to give an accurate result. If you have a biopsy whilst eating Gluten free your body will not be having the autoimmune response that is evident in a positive biopsy.
I am getting confused reading these posts and it concerns me that some people are being diagnosed as celiac without full investigation. It is unfortunatley one of the most misdiagnosed diseases round today and it will be wonderful when there is one foolproof gold standard test to prove the differences between Celiac Disease, Gluten Intolerance and Gluten Allergy.
Hi, we are coming to Maui in June from New Zealand. My daugher was recently diagnosed as Celiac and well I am worried about where we can eat etc.
This may be silly but after getting to know New Zealand products and food etc I am worried about travelling and having trouble finding products.
If anyone can suggest places to eat in Maui (Southshore and Paia) and Waikiki, also if there is a Gluten free product guide for the US and where I can get it from, I would really appreciate any help I can get.