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
Thanks for sharing your son's history. It's comforting to know others are in a similar situation. I was, and still am, hoping that this Celiac diagnosis would lead to a pick up in growth. We haven't been referred to an endocrinologist yet. It seems like every other possibility needs to be ruled out before a growth hormone issue will be diagnosed, so I would imagine that would take a while to determine. How high was your son's TTG at diagnosis? Perhaps your son and my daughter both just need more time to heal. For now, I'm just trying to ensure she's eating plenty of food, high in good fats. If that doesn't do the trick in another 6 months, I'm sure will be referred for more testing.
Thanks for mentioning that. The GI did say that it could be her thyroid, but that he would have expected her to be just short (not both short and underweight). Not sure why that would be? She's 4 1/2 and still hasn't made it to 30 lbs yet. Hopefully soon though. She's just tiny overall. I'm pretty sure he will check her thyroid if she hasn't started catching up in another 6 months. I'll make a note to ask about it too.
Thank you both for your replies. My daughter does look healthier overall (better color, a little more fleshy) even though she's tiny. Hopefully a growth spurt is just around the corner. I think I will wait and see what happens over the next few months, but I will bring up the Casein allergy at her next appointment just in case. She doesn't seem to have the typical Casein allergy symptoms, so hopefully she has outgrown it. I think avoiding milk would be a lot harder than gluten.
My 4 year old daughter received a positive Celiac diagnosis 6 months ago (via TTG blood test and scope/biopsy). We originally went to the Pediatrician because of her severe behavioural and sensitivity issues (she was constantly screaming & unhappy, always tired, needed to be carried, and very small for her age). She originally received two TTG tests (results of 108 and 79).
The past 6 months we have made every effort to ensure she has been on a healthy gluten-free diet. We have found the gluten-free diet is actually great and we don't miss gluten at all. She has been wonderful at explaining she is gluten-free to her friends and teachers at preschool and has made me so proud.
We went for her 6 month follow-up appointment with her pediatric GI last week and were so thrilled to see her TTG results are now within the normal range (11). Other positive changes: she is much happier (still has some tantrums/tactile sensitivity issues, but far fewer and much easier to manage), she is much more active (can run, jump and has much more energy), and she has one bowel movement a day instead of 3-4 (we actually didn't realize this was an issue for her until after she went gluten-free).
The only downside is she hasn't grown as much as we (and the pediatric GI) were hoping. She is still very tiny. Because her family members are average to tall in height (ranging from 50-85 percentile), her pediatric GI thinks her being around the 5th percentile for height doesn't quite fit. He suggested she just might need more time to catch up on her growth as her GI system is healing. He wants us to come back in another 6 months to check her growth and blood work again. He is expecting to see an improvement in her height & weight.
I know many parents here have noticed significant growth improvements within the first few months though. Has anyone experienced growth improvements that took closer to a year?
After I left his office, I got to thinking about an allergy test she had when she was around 1 years old. Because she was so small and always sick at that time, her doctor referred her to an allergist. The allergist said she tested positive (by skin prick) to Casein (milk protein allergy) and that she should be taken off milk. Our family doctor, as well as a pediatrician at our Children's hospital, reviewed the results and told us that it wasn't an unusual thing and that many babies/toddlers are allergic to milk, but outgrow it. Therefore we didn't need to take her off milk (and she still has milk). She doesn't really seem to have any allergy symptoms aside from the fact that she always seems to have a dry, stuffy nose. Anyway, even though it was over 3 years ago, I think I will mention this Casein allergy test result to her GI in case it is still an issue for her and might be affecting her growth? I don't know much about allergies, but she doesn't have any face rashes or bowel issues now, so I'm guessing she might have outgrown it??
Sorry for the long post. Let me know if you have any thoughts on taking longer to grow and/or Casein allergies...
The GI who did my almost-4 y/o daughter's scope also said everything "looked normal" during the scope, but the biopsy confirmed she was positive for Celiac (she also had a pretty high positive blood result). We were told to call in 2 weeks for the biopsy results, which is how long we had to wait. I'm sure they had the results earlier, but I decided to wait the full 2 weeks to call as instructed. That was a long 2 weeks. We've been gluten-free since we found out at the beginning of May. It's been a little challenging so far, but I'm learning a lot. Try to keep busy until you get the results. I composed a list of about 10 questions I was planning to ask the GI if the biopsy came back negative. I just wanted to make sure I was prepared for that (sometimes it's hard to remember what you want to ask, so it's good to have things written down). Hope the wait isn't too long for you...
Thanks Cara. That's a good point about testing the rest of the family. I'll get the blood work done for the rest of us this week. That's funny about having tacos for dinner 3 times the first week your son was diagnosed. I have visions of feeding my daugher rice for breakfast, lunch and dinner. It's going to be a big adjustment for me, but I know it will get easier and there will still be lots of good (gluten-free) food to eat.
I just wanted to post an update. We went for the scope/biopsy a couple of weeks ago. The GI performing the scope said everything looked good/normal, but the biopsy results would be ready in a couple of weeks. I just got a call, and even though things looked normal, the GI says her biopsy was positive for Celiac Disease and we are to start on the diet right away. I'm feeling a little numb, stunned at the moment. I have a house full of gluten and I'm a terrible cook
The next step is an appointment with a dietician. I'll be relying heavily on her help (and this forum). I need it.
I am happy in a way though, especially that her pediatrician thought to test for Celiac. Now I guess I should get my older daughter tested. She's the oppositive of my 4 year old though. My older daughter has boundless energy, very tall and athletic. However she has complained of bad stomach pains about every other day for the past year, so I guess it's worth looking into...
That's too bad your son has to wait 7 months. Are you in a smaller town or up north? We're also in Canada, but in Vancouver. Thankfully my daughter (almost 4) only had to wait about a month to see a pediatric GI. She had a TTG of 108 and then 79 when re-tested. She had the biopsy a couple of weeks ago. They said things looked "normal" during the scope, but we should be getting the biopsy results back today or Monday. My daughter doesn't have the terrible gastro issues that your son has though. I don't know if your GI has a cancellation waitlist you could go on, but maybe that's an option to get in sooner?
Although I doubt the GI will give a formal diagnosis with a negative biopsy, I'm pretty sure her pediatrician will recommend we try going gluten-free whatever the outcome, to see if it helps. My husband wants to go gluten-free regardless as we are at the point of trying anything if it will help her to be a happier little girl. That's great to hear you had such a positive experience going gluten-free. Will the doctor re-check your blood at some point? I would imagine if the levels went way down after being gluten-free for some time that would support a celiac diagnosis?
Thanks very much for the information. I guess if the biopsy is negative, I will ask for those other specific celiac blood tests. The GI said he would be taking 5 samples, so hopefully if there is damage he'll get the right spot.
Hi - I don't know much about Celiac disease or testing for Celiac disease, so I'm hoping someone here might be able to shed some light for me or have a similar experience. My almost 4 yr old daughter was referred to a Pediatrician for being highly sensitive and irritable. Aside from being irritable, she has always been unusually small since around 6 months of age (around 3rd-5th percentile for weight/height). The rest of our family is generally thin, but average to tall in height so her growth has always been a concern. She's also pretty clumsy, weak, and tires easily. Other than those things, she is generally healthy (no real gastro issues that I notice). Anyway, the ped was going to refer us to an Occupational Therapist as he was thinking she has Sensory Processing Disorder, but decided to run some bloodwork first.
He checked her iron, thyroid and TTG (for Celiac?). Everything came back fine except her TTG was 108. He said anything under 20 was normal, so he was quite certain she had Celiac just based on that. My husband's grandmother did have Celiac, but I wasn't aware it was hereditary so never mentioned that.
Anyway, the Ped referred us to a Pediatric GI. He re-did her TTG test and it came back at 79. That was maybe 3 or 4 weeks later. Does it seem strange that it would go down by almost 30 points? We didn't have her on any sort of gluten-free diet, although she generally prefers rice, eggs, cheese over gluten foods anyway (but she does eat crackers and pasta a few times a week). As far as I know, the TTG was the only Celiac bloodtest they ran.
We go for an endoscopy/biopsy next week, but the GI didn't really sound convinced that we would definitely be getting a positive diagnosis and that most of the cases they see are TTGs in the 200s.
Is it common to have a semi-high TTG, but a negative biopsy, and then it turns out not to be Celiac?
I have a feeling the biopsy will be negative and then we'll be back to square one.