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
The doctor's office is supposed to be calling this afternoon. There's a big knot in my stomach as I type. I'll try to answer your questions as best I can. The big bummer thing about Celiac is it seems there is such a gray area.
The total blood panel is:
Total IgA serum
The two most specific to Celiac are the tTG and the EMA. You need the total IgA to make sure you are not IgA deficient. The two AGA tests are not used by many physicians anymore due to their lack of specificity. The EMA and tTG show anti-self antibodies (auto-immune indicators) and the other two are anti-gluten antibody indicators.
The way they diagnose Celiac is based on blood and biopsy results. Some cases seems very clear cut, but I think when it is caught early or the damage is patchy, it's harder to diagnose. I really recommend DR. Green's book. I think it will answer a lot of your questions.
Our doctor is Dr. Guandalini at the University of Chicago. He's wonderful. He came from Italy in the 90's and noticed that Celiac in the US was grossly underdiagnosed. He started The University of Chicago Celiac Research Center. I would highly recommend going to the top of the food chain if you have any questions. Don't mess around. We have been doctoring with my son for 13 months!! I can't believe the year has been eaten away by this. It's obsessed me and been my entire focus. Celiac is his specialty and he wrote the guidelines for diagnosing Celiac to be used by the GI's all around the world. It will take a month or two to get in, so I would call ASAP if you're interested.
I will let you know what, and if, we hear any news.
I totally feel for you. We have had a similar experience. I would do the diet for 6 months and then re-do the bloodwork. If the tTG drops, you will know it's Celiac. Genetic testing would also help. DQ2 and DQ8 are the recognized Celiac genes.
Wow. What a great thread and they are giving you a lot of great information. Your doctor seems very good and thorough. Compared to a lot, he seems as if he's looking for the subtle details which is good. Most doctors wouldn't have even thought to look for Celiac in and asymptomatic patient. I would give him that much.
ABSOLUTELY DO NOT START A GLUTEN FREE DIET. THIS WILL ALTER THE TEST RESULTS AND MAKE THEM INACCURATE.
My son was very gaggy as a child also. We are playing the same game you are right now. The waiting game, and it's not fun.
Celiac Disease has over 200 symptoms and that is why every case presents differently. I highly suggest the Celiac book by Dr. Peter Green. It's excellent and very medical. Also, make sure they run the full panel of blood tests.
Just to clarify, the ttg and villous blunting are not 100% Celiac. That is why doctors pool all their info together. The big thing to have in an positive EMA and villous blunting. This is what we medically know about our son. Two copies of DQ2, hydrogen breath test positive for Lactose intolerance, elevated tTG (only slightly, but he had been on a gluten free diet 3 months when test was takend), and now they found abnormal mucosa and gastritis in his stomach. We had the biopsy done last Tuesday and I'm going crazy waiting for the results! If you read Dr. Green's book, he states that there are other conditions that can elevate tTG and flatten villi. They are other auto-immune disorders like Diabetes, Crohn's Disease, IBD, Hepatitis, and Liver problems. The test is specific, but not 100%. We are so glad we didn't just go off the positive tTG. They found gastritis which is a whole separate problem that Celiac couldn't have caused. It could be Celiac and a separate condition, or one whole separate thing causing all the problems.
We had an excellent doctor at the Universtity of Chicago. He is world renown and unbelievably smart. They are also ruling out EE and H pylori. I trust our doctor and I'm confident we will have answers soon. Our story was a nightmare and we're on Doctor # 6.
I really encourage you to go through with the blood tests and really be sure. If he has Celiac, the tTG is very sensitive and specific and I think you will get a lot of answers. If it's not Celiac, then you can explore the gluten intolerant theory on your own, as the medical community doesn't really diagnose a gluten intolerance. It might be a good idea to have him allergy tested as well. Also, have them check for a lactose intolerance.
Trust me, Celiac is very managable. Now, I'm worried about Crohn's and that makes Celiac look like a walk in the park. I think if people could pick a disease if they had to have one, Celiac would be on top. It's the only autoimmune disorder where the trigger is known. Good luck and stay calm. I know it's hard, but hopefull soon you will get some answers.
I'm not saying that you don't have Celiac, but I am saying that you are 100% right that you were NOT properly diagnosed. I can't believe the ignorance in the medical community, and this was a GI specialist! That's crazy and I would be so angry. The two most specific tests to Celiac are the tTG and the EMA with the EMA having almost a 100% accuracy rate. The gold standard is the biopsy. A good GI doctor would definitely NEVER have diagnosed you with those results. The two tests you had come back positive are in no WAY, SHAPE, or FORM a diagnosis of Celiac. I would educate yourself w/ Dr. Peter Green's book about Celiac or go on a reliable website like Web MD. CRAZY!!! Stories like this outrage me! Good luck and I would personally take the info you learn back into the doctor. Celiac is a serious life long disease and if it's not Celiac, you deserve to know what it is. Good luck! Don't waste your money on Enterolab either. They won't diagnose you w/ Celiac. They can't and they don't claim to. They could diagnose a gluten intolerance, but if you feel better on the diet, and who wouldn't, you've already figured that one out. :) Good luck again!
I highly suggest the biopsy. It's not invasive at all and it's best to confirm what's going on inside. Also, I would highly recommend Celiac Disease, A Hidden Epidemic, by Dr. Peter Green. It's the best book out there. Read it and educate yourself as you are your childs number one advocate. I would not start the diet until you find out what blood test was positive, finish the lab work, and under-go the biopsy. Once you go down the gluten free road, all testing is not reliable any more, and speaking from experience, it's not easy to turn back. Make sure your doctor ran the tTG and EMA. Those are the most specific to Celiac.
Sorry, I think there was a misunderstanding. Ann sent me a PM to explain some things to me. Basically, she explained that they can sometimes see folds or scalloping of the duodenum, but the pathologist looks for the microscopic damage done to the villi. Good luck.
I'm so confused. I was under the impression that they could see abnormalities/scalloping in the folds and mosaic type patterns in the duodenum, but I thought our doctor told us they need to take samples to look at the villi because the damage could be microscopic. If they can diagnose based on what they see, why do they take biopsies at all? Does everyone with Celiac have that visible damage? This is all so hard to grasp.
I CANNOT STRESS ENOUGH HOW IMPORTANT IT IS TO FOLLOW UP WITH AN ENDOSCOPY IF THAT'S WHAT YOUR DOCTOR RECOMMENDS. OUR SON'S TTG WAS SLIGHTLY ELEVATED. IT SHOWS THAT THE SMALL INTESTINE IS DAMAGED, BUT YOU NEED TO FIND OUT WHAT THE CAUSE OF THE DAMAGE WAS. TTG IS NOT 100% SPECIFIC TO CELIAC. I FELT AS A PARENT, I OWED IT TO MY SON TO FIND HIM A PROPER DIAGNOSIS. THEY FOUND INFLAMMATION AND ABNORMAL MUCUSA IN HIS STOMACH. HE COULD HAVE A TOTALLY DIFFERENT CONDITION OR A CONDITION ON TOP OF HIS CELIAC. THE POINT IS...IF WE WOULD HAVE JUST WENT WITH THE POSITIVE TTG, WE NEVER WOULD HAVE KNOWN ABOUT THE OTHER CONDITION THAT WAS STILL CAUSING HIM PROBLEMS. HAVING HIM SCOPED WAS THE BEST THING WE EVER COULD HAVE DONE. WE HAVE AN EXCELLENT DOCTOR AND WE WILL FINALLY GET SOME ANSWERS. CROHN'S, H PYLORI/GASTRITIS AND CELIAC CAN ALL HAVE SIMILAR SYMPTOMS AND DO THE SAME DAMAGE. IT IS SOOOOO IMPORTANT TO LOOK IN THERE AND SEE WHAT'S GOING ON. I AM SO PASSIONATE TO HELP OTHERS NOT HAVE TO GO THROUGH WHAT WE DID. IF YOU GO ON A GLUTEN FREE DIET WITHOUT KNOWING FOR SURE, YOU AND YOUR CHILD WILL ALWAYS WONDER. PLUS, SOME DAY THAT CHILD WILL BE AN ADULT AND BE OUT ON HIS/HER OWN. THAT'S MY PERSONAL OPINION, BUT FEELING BETTER ON A GLUTEN FREE DIET IS DEFINITELY NOT SPECIFIC TO CELIAC. MY SON COULD HAVE A BACTERIAL INFECTION CAUSING HIS GASTRITIS AND WHEN YOU GO GLUTEN FREE YOU CUT OUT A LOT OF UNHEALTHY JUNK AND DEEP FRIED FOODS. IT'S SO IMPORTANT TO GET TO THE BOTTOM OF WHAT' REALLY HAPPENING. SORRY FOR THE LONG POST. GOOD LUCK.
A POSITIVE BLOOD TEST IS MOST ABSOLUTELY NOT AN OFFICIAL DIAGNOSIS. I'M SORRY, BUT THERE ARE MANY OTHER CONDITIONS THAT CAN ELEVATE AN IGA TEST. THE MOST SPECIFIC FOR CELIAC ARE EMA AND TTG. YOU MOST CERTAINLY SHOULD SEE THE PEDS GI AND I ABSOLUTELY WOULD NOT START A gluten-free DIET UNTIL THEY HAVE FURTHER EVALUATED YOUR DAUGHTER. GOOD LUCK. I'M SORRY TO BE SO PASSIONATE, BUT I HAVE PERSONAL EXPERIENCE. MY SON HAD A POSITIVE TTG AND WE HAD THE BIOPSY YESTERDAY. HE ALSO HAS ANOTHER CONDITION GOING ON IN HIS STOMACH. A SEPARATE CONDITION. THEY ARE ALSO LOOKING INTO CROHN'S DISEASE. IT IS SO BENEFICIAL TO LOOK INSIDE TO REALLY SEE WHAT'S GOING ON. IT IS SO IMPORTANT TO RECEIVE THE BEST, MOST ACCURATE, DIAGNOSIS SO THAT THE TREATMENT CAN FIT THE DISEASE. GOOD LUCK! :)
I feel so bad for you. I urge you to get a better, more competent doctor. If you had all that damage inside, they need to find a root cause and get you better! That doctor is definitely out of it if he thought he was telling you about your villi from the scope. It's scary. We go to the University of Chicago and see a world known GI. It's amazing when you have a good doctor. We went through some really bad ones. I know it's so hard, but try to stick up for yourself and search for better care. I'll say lots of prayers for you.