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
"If a patient’s celiac panel is only positive for antigliadin IgG, this is not highly suggestive for CELIAC DISEASE if the patient has a normal total IgA level, corrected for age. Younger children make less IgA than older children and adults. A markedly elevated antigliadin IgG, such as greater than three to four times the upper limit of normal for that lab, is highly suggestive of a condition where the gut is leakier to gluten. This can happen in food allergies, cystic fibrosis, parasitic infections, Crohn’s disease, and other types of autoimmune GI diseases. These antibodies may also be slightly elevated in individuals with no obvious disease."
My daughter has very few GI symptoms but overwhelming fatigue & achiness (pain) when she eats gluten. When her doctor did endo/coloscopy he was surprised at the amount of damage already done to her villi and also diagnosed her with IBD (thankfully in remission). symptoms vary greatly from person to person. That was 2 1/2 years ago and we are actually going up to Yale next week for another endo/coloscopy. It will be interesting to see what they find now.
Oh yeah, her original blood work and stool samples were positive for celiacs and they thought something else was going on despite her mild symptoms.
My daughter was older, 15, but based on positive bloodwork and 2 rounds of stool testing they recommended endoscopy and colonoscopy. That was 1 1/2 years ago. The Dx was Celiacs and IBD. She goes back every 3 months and the IBD has been narrowed down to Ulcerative Colitis.
Dr Hyams was not presented with a diagnosis, he was presented with preliminary test results and then ordered additional tests. No diagnosis was made until all the test results were in and analyzed. It turned out to be a complicated diagnosis and I appreciate his concervative approach.
Though my experience with Dr Hyams may be coming from a different side of the equation,I am an educated, well informed person and I won't sit back and watch Dr Hyams be bashed without giving my opinion.
I totally disagree, Dr. Jeffrey Hyams and his team at Connecticut Children's Medical Center are fantastic!We are very grateful that he was put in our path and I think I mentioned Dr Hyams by name in a post ~1 year ago. Based on our experience I would recommend Dr Hyams to family and friends of ours.
In July of 2011 my teenage daughter (15 at that time) was having stomach problems, nothing earth shattering, diarrhea and cramping but the fact that she mentioned it to me and her father made us take notice. Her pediatrician ordered blood, urine and stool tests. The blood test came back positive for celiac's disease and also indicated she was having absorbtion problems. The stool sample had both white and red blood cells in it. Her pediatrician referred us to Dr Hyams. The very next day Dr Hyams contacted us after reviewing our daughter's test results. He retested her stool and got the same results so he scheduled an endoscopy and colonoscopy for the next week. Biopsies indicated she has Celiac's and IBD. The first meeting we had after the biopsies was a 3 hour affair and ee met with Dr Hyams and my daughter was introduced to her team which included a nutritionist, a nurse and a coordinator who all work directly with Dr Hyams. They have all been great.
Unfortunately, because of insurance changes, we had to switch Drs. We are lucky because my daughter's new Dr is working out very well. The new Dr is at Yale New Haven Hospital. After she went through all the records and test results she said that she felt that Dr Hyams had made a vert good diagnosis that she agreed with. She also pointed out that because she has both Celiac's and IBD (which has been indentified specifically to be Ulcerative Colitis) it is not an easy or common case and that she has been in good hands.
I am sorry that you had a negative experience but our experience has reflected what kind, caring and knowledgable pediatric gi Dr Jeffrey Hyams is!
My 15 yr old daughter was Dx with Celiacs and IBD last September her GI doctor (a well known and respected Pediatric GI) and he and the nutritionist made it clear that all gluten had to be removed from her died but dairy was fine, even encouraged, unless the dairy began to cause problems. That infact she needed the nutrion, calcium and calories, from dairy products.
I will reread the article and let you know what I figure out. In thinking back it may have said that it is best to be gluten free and remove legumes from your diet as 2 seperate things. Somehow linking the protein in legumes with leaky gut.
Thx for the info. Don't have to worry about eggs because all of a sudden they taste disgusting to me. I will go ahead and reduce iodine where I can.
Since you have been a wealth of knowledge I have another question for you...
What is the celiac/gluten free stance on legumes? I have always thought that legumes are a great source of protein and fiber. The MS "best bet" diet says that legumes shouldn't be eaten unless sprouted.
Yes, I have been gluten free for almost 3 weeks. An odd thing is that, other than dairy & legumes, protein sources have all begun to taste like yucky fish. I am already worried about the decrease in protein in my diet. Does all dairy have iodine?
Have had rash since July and GP thought it was shingles. In Sept I we t to dermatologist who barely looked at it and said "dermatitis with some fungal thrown in for good measure. He gave me steroid cream and antifungal cream. The first 2 days the rashes improved then was kind of neutral for a bit. Now the part where the rash has always been is paler pink and the new edges (it has expanded) are darker pink. Any ideas anyone?
So far everything is going well. My daughter really is a good kid & well liked by teachers and staff. It helps that the middle school (where her sister is) and high school are separate parts of the same building & she has had the same guidance counselor since 7th grade (she is now in 10th). Not only did they agree to universal bathroom pass, seating in class that works for her, flexibilty around dr's appts, testing and sick days and without us asking the teachers agreed to give her a little wiggle room to adjust to the changes in her life. Our state has annual standardized testing and has a "stop the clock" plan already in place for cases like my daughter's. The school has requested that we file the 504 because it protects them as well.
Does anyone know of a MS Forum that is similar to this one? I figured since they were both autoimmune diseases , and I have already gotten so much good info from all you people, it was worth a shot - thx
Thx so much for your help! It is my goal this weekend to put together some quick reference cards, including the various gluten-free food symbols for her. I'll laminate them and she can stick them in her wallett!