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
My 3.5-year-old son was diagnosed with celiac disease just over a year ago. His TTG has gone from well over 100 to normal during that time, and all symptoms are gone.
However, in all routine bloodwork done since Oct 2012 his liver enzymes have remained elevated. His GI ordered some additional bloodwork last week to look into it. All the typical liver tests came back normal, including his AST. His CK level came back very high though - just over 2,300. The next step is to see a neurologist. The GI said the CK has to do with muscles and red blood cells. The GI called us at 7 pm on a Friday to tell us this and we're terrified of what it could mean.
For what it's worth, he is an incredibly athletic, energetic kid. No signs of lethargy or weakness since going gluten-free.
I totally understand your concern about your child not participating in shared snack - we're in the same boat. In the 1s and 2s classes at our daycare parents provide all food each day, but in the 3s room there is shared snack like you describe. Our son graduated to that room last week, and so far he's been fine. Not at all traumatized or upset like I worried he'd be!
The Glutino crackers are really tasty- we like the cheddar and original flavors best. Sometimes we spread them with cream cheese to make sandwiches. Other favorite lunch box items (in addition to fruits and veggies):
- Annie's Homegrown Cocoa & Vanilla Bunny Cookies
- Back To Nature Gluten Free Rice Thins Multi Seed Crackers
- Glutino pretzels (minis and sticks)
- Baybel cheeses
- Cheese sticks
- Ham and cheese roll-ups
- Van's frozen waffles
- Almond butter and jelly on Udi's whole grain or cinnamon raisin bread
- Annie's gummies
Our son (now 3) was in preschool full time when he was diagnosed last year, and we've had a very good experience so far. I did send in a lengthy health notice that's posted in the classrooms, pasted below. I was terrified at first of him eating other children's snacks, crumbs, playdough, etc., but with good teachers it has been totally fine. I'm amazed at how quickly he learned not to share other kids' food, and he will ask us and his teachers if food is gluten free. We're very honest with him about things which seems to have helped. He moves up to the next classroom tomorrow, where they do shared snack, and we've been explaining that he'll still eat snacks that we pack from his lunchbox. Hopefully he takes it in stride...
xxx has Celiac disease, an autoimmune disorder that prevents him from being able to eat any gluten. xxx needs to avoid all gluten completely. Even a little bit could be harmful for him. If he eats it, he could feel very ill, and even if he does not feel ill, he will sustain serious damage to his small intestine. Ingesting gluten also puts him at risk for severe stomach pain, and many other serious conditions such as nutrient malabsorption, diabetes, anemia and even certain cancers.
For that reason, he needs to be very careful that nothing with gluten in it enters his mouth during meals, snacks and arts and crafts. xxx is aware of his condition, but is too young to be able to avoid gluten on his own so we need your help and cooperation to ensure that he always stays safe at school.
Gluten is a protein found in wheat, rye, and barley. It appears in most types of cookies, snack foods, breads and cereals. Gluten is also hidden in many foods not made with wheat, rye or barley. A gluten-free food such as corn chips or nuts may be processed on machinery that also processes gluten products, or gluten may be hidden in other ingredients such as flavorings (natural or artificial). Unless a product is clearly labeled Gluten Free, or we
My understanding of the genetic test is the same as StephanieL's; a positive genetic test means you have a predisposition to develop Celiac (or another of a handful of autoimmune diseases including diabetes and Hashimoto's).
My older son was essentially diagnosed at 27 months, and without a biopsy. He had been growing extremely slowly since 6 months, and then became extremely ill around his 2nd birthday (bloating, massive diarrhea, fevers, lethargy, etc) and at 27 months he was 30" and down 20 lbs. All blood tests came back overwhelmingly positive for Celiac. The pediatric GI we saw gave us the option to biopsy or not. He said he could be 99% certain our son had Celiac without the endoscopy, so we skipped it. Because he was so ill and frail we couldn't get comfortable with doing the procedure to get the extra 1% certainty.
Now, nearly a year later, we just had a followup visit with the GI. He said in recent months things are shifting further away from needing the endoscopy for an "official" diagnosis when there is a strong positive blood test. Despite not having the endoscopy, he has given our son a diagnosis of Celiac disease, given his initial strong test results, symptoms presenting at time of crisis, and response to a gluten free diet. 10 months after removing gluten from his diet (and our household) our son is 28.5" and 34.5". Still really small compared to his classmates, but he's healthy and growing. And his IgA TTG is only baaarely above normal.
Our younger son was only 8 months old when things got scary for his brother. The GI recommended that both the baby, my husband and I had bloodwork done. It showed that my husband and younger son tested positive for the gene pairing, but negative for celiac. At 12 months the baby's growth slowed way down, and at 15 months he started having GI symptoms (as well as extreme fussiness). He was only eating a small amount of gluten each day (shared snack at daycare). We did another bloodtest which still came back negative, but we removed all gluten anyway. By 18 months his symptoms went away and his growth has picked back up. The GI can't give him a positive diagnosis, but we all agree he should remain gluten free. We can revisit doing a gluten challenge when he's older if we feel we need things to be official...
My older son was diagnosed with celiac disease this fall (at 26 months old). His GI recommended that the immediate family all be screened, including our 8 month old younger son. We each had blood drawn and it showed that none of us are positive for the gluten antibodies, but my husband and younger son did test positive for the gene pairing that predisposes them to develop celiac. We'll probably have them tested once a year going forward even if they're not showing symptoms just to be sure. I'm glad we did the testing so we can be proactive.
We were very surprised when our phone rang at 9:20 pm on Tuesday- it was the doctor calling to see if we needed to talk, because he hadn't been able to talk to my husband personally yet. The three of us spent 40 minutes on the phone and it was extremely helpful.
The doctor said he has to recommend the biopsy because that's the standard of care, and every medical association and society won't recognize a positive blood test alone. Then he went on to say it is a completely reasonable decision to not have it. His following points were:
- TTG blood tests are typically 92-97% accurate when the reading is 20-100. Our son's case is different because his level is much greater than 100, which makes the accuracy of the test better than 98%. Which he said is pretty much as certain as any medical test gets. And while there aren
I took my son to Children's Hospital Colorado last Friday to see a pediatric gastroenterologist (an hour flight for us). It was truly an incredible experience and I was beyond impressed from start to finish. The facility is brand new and there was awesome stuff for him to play with everywhere. We checked in for our appointment and didn't have to wait at all. I think the doctor was in with us before it was even our appointment time. We had a wonderful, thorough, comprehensive appointment. My son loved "Dr. J" and spent the hour building forts with chairs and playing swordfights with those tongue stick things. He was even giggling during the physical exam part.
Dr. J does believe he has celiac disease, and that in September he was in, or bordering on, celiac crisis. We're doing all the right things so far. He did a blood draw to recheck his TTG levels, as well as his vitamins and minerals, and kidney, liver and thyroid function. His kidney function is back to normal, but he's anemic and his liver numbers are still elevated. Not enough to indicate hepatitis or something else bad, but they're 3x the normal level. He thinks this is probably due to the celiac, but wants to do an ultrasound to take a closer look. He also noticed during the physical exam that the liver was slightly enlarged. The TTG number is also still very high - 124.
The doctor said the elevated TTG indicates there is still damage to his small intestine, so the opportunity still exists to do the biopsy to get 100% confirmation of the diagnosis. This is new to us - previously we'd been told he would have to be put back on a gluten diet before doing a biopsy, which was a total nonstarter.
But he also said that the TTG number being so high (and at this age) tells us with ~98% certainty that he has celiac disease. But official diagnosis can only be given with positive results on the biopsy... He explained the procedure in detail, including the risk, a 1 in 3,000 chance the scope could create a bubble that would require emergency surgery to fix. He said it happens there about once a year.
I am 100% confident in this doctor and the facility, and it can be scheduled this week. Would you do it? Is it worth it to be 100% sure? We know he has it, so why should we put him through the endoscopy to get the extra 2% certainty? Will it matter for school, insurance, services, etc in the future?
I think my DS was glutened on Saturday after eating two peanut M&Ms and a bite of Snickers - both listed as safe on a halloween candy list I printed out too. His appetite (and behavior) have been off since that evening.
But we can only do the best we can do! I'm learning to check with the manufacturers for everything - I googled whether Crisco vegetable oil was safe and read on several websites that it was, but when I contacted the company they said it didn't pass their tests for gluten free (PPM, equipment, sources that contain gluten). Since I switched to olive oil his bloating and gas have gone down considerably, so I think it was affecting him.
Roda- I can't imagine doing a full gluten trial either. He was so sick we weren't going to give him one more speck of gluten - it absolutely didn't feel right to keep him on it while we found a better doctor to do the biopsy. And as our primary doctor said, how sure did we need to be if we had a positive blood test and positive reponse to the diet?
AzizaRivers- That's a great point about his medical records for school, and thanks fior your input about dairy. I think we will cut it out entirely for now. As he's been feeling better he's been getting less picky about foods by the day so I already have some good pizza alternatives. What do you think about eggs? I've avoided those just because I have trouble digesting them.
Our whole house has gone gluten free, and I've replaced all damaged/worn cooking gear. We also have a 9-month-old son so if he was eating gluten it would likely be getting on the floor, their shared highchairs, etc., so it just seemed easier to go all the way. He does go to daycare, however, so that's our biggest cross contamination risk. So far they've been wonderful about helping us though, and he's not the first celiac child they've had. They even made gluten-free play dough last week. But no matter how careful they are we fully understand how hard it is to monitor the kids at snack/lunchtimes, so we're all working to education him and his classmates about why they can't share. It's been amazing how quickly they understand!
My son is 27 months old and we recently determined he has celiac disease. I'm still wrapping my head around what this means and what we need to do. I apologize in advance for how long this is!
His growth has struggled since he started eating solids at 6 months old.
Birth- 25% for height and weight. (6 lbs 3 ozs, 18")
2, 4 & 6 months- 25% for height, 50% weight
9 months - dropped off chart, didn't grow since last visit
12, 15 & 18 months - 2-5% for height and weight
24 months - weight about 5%, height dropped way off chart. (22.8 lbs, 30.5")
After his 2-year checkup the pediatrician sent us to have a hand/wrist xray done to check his bone growth. He suspected he had constitutional growth delay, but the x-ray turned out to be a waste of time. The age of the various bones ranged from 9-24 months, which can be common for a 2-year-old, according to the pediatric endocrinologist who reviewed it. The endo recommended we just continue to track his growth, because he had a healthy BMI, hadn't had any nagging illnesses, had hit all other developmental milestones, and ate well. It took 2 weeks for these results to come back and we worried the whole time, and were unable to reach the doctor.
After that we switched him to the family doctor I had started seeing during my pregnancy with our younger son (9 months). We worried there was something else going on, and I wanted a doctor we could rely on and actually reach if things took a turn for the worse. Sure enough, the next month things became downright scary. At the beginning of September he started having giant, smelly, pale blowout BMs; his belly was HUGE, distended and hard like a rock; he was incredibly gassy; eyes sunken; skin dry; had no appetite; was lethargic; just not at all himself. He looked so frighteningly malnourished that we had to fight back tears when giving him a bath. The blowouts were getting worse each day and we had to bathe him after each one because the smell was so strong. His body just wasn't absorbing anything and his weight had dropped 2 pounds to 20 lbs 14 ozs.
During the second week of this the doctor ordered stool sample testing for parasites and bacteria and it all came back negative. Then one night during the third week I got him to eat a new cereal - wheat squares - and afterward his belly more swollen than ever. That's what led me to the lightbulb thought that this could be about wheat and possibly be celiac. We cut gluten from his diet the next day and the doctor ordered a blood draw. He was so dehydrated it took a few tries.
We were also also referred to a pediatric gastroenterologist. The first appointment available was FOUR months away. But after I briefly explained the situation the doctor on call said he needed to be seen immediately. We went the next day, but the appt was AWFUL. Despite it being a pediatrics specialty clinic at a university hospital, nobody did anything to make my son feel comfortable or not afraid. The doctor we saw was dismissive, almost accusatory, and didn't take a full history. After asking a few questions she tried to examine my son, but stopped in frustration when he cried. She left the room and 15 minutes later someone came in to explain how the surgery process would go next week... They had scheduled an endoscopy and she never came back to say what she thought it was, what the endoscopy would entail, etc. I knew about it from my own research, but was appalled at how it was being handled. The next day the nurse called to tell me he needed to start taking Vitamin K for clotting because he was so malnourished. Then she asked if I had questions, so I asked what the doctor thinks is wrong with him. She said the doctor believes he has celiac. I prodded more and asked why, and she said he is "classically presenting".
In the meantime his CMP came back and several things looked slightly off, including his TSH, alkaline phosphate and AST levels. Then the celiac panel came back from Mayo. His TTG IgA number was greater than 100 (normal level listed as 4) and TTG IgG was 19.3 (normal listed as 6). That was all the proof we needed - and there was no way were comfortable seeing that GI again. Our regular doctor recommended we keep him gluten free and referred us to a local nutritionist with a specialty in celiac.
Two weeks into the gluten-free diet his energy started to come back. Now we're 4.5 weeks in and he's gained two full pounds, his appetite is huge, and his energy is through the roof! I got some initial advice from the local nutritionist, but he scared me quite a bit with how extreme he was about cross contamination. (However, the more I read the more I realize he knows what he's talking about...) I feel like we still need more direction/structure though, so we have an appointment in a few weeks to see a pediatric gastro and nutritionist at Children's Hospital in Denver (a short flight away for us). Is that crazy?
Other than whether or not I'm crazy, I have a few other questions.
- While his BMs now have more color and are much less frequent, his tummy still gets very distended by the end of the day and he's extremely gassy. Is that normal this early in the healing process? I'm worry he's still getting some gluten somehow.
- Would you eliminate all dairy? We cut out milk and yogurt, but he's still getting butter on his gluten-free toast and is eating mozzarella on his gluten-free pizza. I tried one cup of Lactaid last week and the next morning he had a huge, pale, stinky BM, so I'm keeping him off milk. (he refused almond, rice and coconut milk alternatives) He loves yogurt though, and it's a great source of fat and calories, so I keep hesitating on whether that should be cut out.
- What supplements/vitamins would you recommend? Is L Glutamine safe and/or helpful? If so, how much per day? Right now he's taking a multi-vitamin (that I made sure was gluten-free), an Omega 3 supplement, and probiotics mixed in his water.
ETA one more:
- Is it okay to say he's been diagnosed even though we didn't do the biopsy?
The wrist x-ray is to check his bone growth age. My son, now 27 months, had his 2 year pediatrician visit this summer and the doctor was concerned about his lack of growth so he ordered a bone growth x-ray of his hand and wrist. It was reviewed by a pediatric endocrinologist who ultimately determined that 2 years old is too young for the test to be conclusive - the age of the bones in his hand and wrist ranged from 15-24 months, which they said can be common at that age. My ped said ultimately he had constitutional growth delay and would catch up later. The whole thing got me worried there was something else going on (and I was annoyed we went through the x-ray process for nothing) so we switched doctors.
I was glad I did, because 6 weeks later my son got extremely ill in September, lost 10% of his already meager weight and was getting sicker by the minute. Our new pediatrician ordered a celiac panel and the TTG IgA number came back greater than 100 and TTG IgG was 16.3. He's been gluten free for a month now and has already gained 2 pounds (going from 21 to 23 pounds). He was 20.5 pounds a full year ago, so this is a huge gain!
I think you're right to take those results seriously. I would call and see if you can get the appt moved up. Whether or not to put her on a gluten free diet now is a really good question. We decided to go gluten-free immediately because our son was just too sick to keep him on it another second longer. We did get an emergency appt with a gastro that wanted to do a biopsy, but she was awful and we just weren't comfortable with her doing the procudure. We have an appt in two weeks with another specialist but we're keeping him gluten free for now.