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 son was the same way. We had got gluten free but we were still having some behavior issues.
I ended up cutting our dairy, as well, and it made a BIG difference. Try cutting out dairy and go from there. If there are still issues, do an elimination diet. We've found that he can have limited amounts of dairy (as minor ingredients in something)and still be okay...but not something with it as a main ingredient.
I had also found that he was having more issues during the week than during the weekend and found that at school he was still having items with wheat and dairy in them. Once we nipped that in the bud he was good to go!!
Cara - this sounds very similar to my son! He improved after removing gluten but then he kept having episodes. We removed milk an he got even better. The extreme episodes are farther apart and good dys growing in number. But he stills has those bad says and days of just constant irritability. It could be a cc of gluten or milk,...or something else we haven't identified. I have a lot of the same questions and concerns as you.
Our son did see a behavior therapist when he was 4 or 5 and she didn't see any concerns like ADD, etc. she noted he seemed to have some heightened sensory issues but not horribly so.
I am Watching his sugar pretty closely. We see an alternative med biofeedback specialist for his allergies (it helps...whacky but it does) and she noted his sugar reaction (along with milk and gluten) was really high.
Keep in touch. I will be interested to hear what you are able to uncover.
I hear you on the 'feeling like your on your own'. It's so frustrating. I am still learning to trust my mommy gut. And from reading about your daughter, I think you should trust yours! I'm a newbie here to so am sure you will get some really helpful info from others on here - I already have.
I am one who has not gotten the official test done on my son. After the myriad of things he's gone through and doctor after doctor brushing the food sensitivity idea off, I ventured on my own. I did take him to a couple of alternative med specialists...both pointed out gluten and milk immediately. Why is it not an obvious answer for a regular doctor??? Anyway, I went ahead and removed them and it has helped him so much.
I know one reason people want the official diagnosis is it will help with getting the schools to comply. The way I got this accomplished was I started journaling what my son ate and his reactions. After doing this for a couple weeks or so, I put the information together, and sent it along with a letter to my doctor explaining my observations of him off gluten & dairy vs. on it. I requested she fill out the form for the school so I could go a full 30 days without either and then re-evaluate after that time. The doc went for it!
Anyway, long story not so short (sorry) - if you can't get your doc 'on board' with you...move on without them. Moms know best!
Thank you. That makes sense. I have to be honest that I haven't given that as much attention is I should. And I'm honestly not sure how much CC goes on in our home. But it's definitely something I will be paying more attention to.
Thank you all so much for taking the time to respond. It means so much to me. Sometimes I feel so lost. His attitidue is a little better today...still stuffed up. He doesn't react very well to typical cold/allergy meds so bought some all-nutaral stuff (Sinupret) yesterday in hopes it will help him.
Thank you for suggesting the journal. This is something I've been doing. I have to remind myself to be as detailed as possible, though.
I was so excited last night to tell my husband about reading the posts from others on here that have a child that show reactions through behavior. It was such a 'weight lifted off of our shoulders' to know we aren't alone and that we aren't insane!!!
I do have a question - what does "cc" mean? Sorry if it's obvious...
I think this is more a newbie vent than anything...but reading here today has been so validating for me.
My son is 7 years old. Starting at age 3 we have battled a whole slew of things with no difinitive answers. He has long had horrible mood swings coupled with tantrums, kicking, yelling, etc. Even that description does not give the severeness of it justice. When not in the middle of one, he is one of the sweetest and loveable kids. Dr. Jekyl and Mr. Hyde. He
Has anyone had reactions to Udi's sliced bread and/or buns???
I'm so frustrated right now. My son is 7 years old who has long suffered with allergies and frequent emotional 'meltdowns'. After an allergist was unable to identify what the issue was, we started seeing a nutritionist and biofeedback specialist who identified milk and gluten. I have long suspected that his emotional reactions were tied to something he was reacting to. So we have gone off of milk and gluten (so have I).
He has done pretty well on it but over the past few days his nose has been extremely congested and he had a horrible emotional roller coaster of a meltdown yesterday and has been irritable and defiant on other days. I try to journal everything he eats and his moods during the day. Over the past week, I notice he has eaten more Udi's bread than usual. So I'm starting to wonder if there is something with the Udi's bread he is reacting too? Maybe it's something he can only have in moderation?
I'm going to not serve him any for a few days and see if he improves. But I wanted to see if anyone else has experienced something similar?
I know there are a lot of people searching around on these boards looking for answers when they suspect celiac so wanted to be sure to come back and post after my appointment no matter what the results were.
First thing - I'm so glad I went. And I was so releived that the doctor didn't think I was a complete looney.
After examining my son and asking lots of questions, she came up with a 'plan of action'. She did wonder if there might be some intolerance issues but felt the most important one to address first was the sleep. SO, starting today, we are to allow him at least 12 hours of sleep per night...more if he needs it. He currently gets about 10. She said some kids just need lots of sleep...mostly kids his age. She said "Not all kids fit in the same box." Love that statement! She also wants him to eat something before bed...like a banana. Anyway, that's step one...she wants us to get that going for a few days and see what changes, if anything.
THEN, we are to go at least one week (with the colaboration of our preschool per doctors orders) with no lactose and see what changes there are.
Then next, if nothing has changed with the lactose, she wants us to go at least a week with no gluten and see what changes, if anything.
I'm supposed to check back in after that. She said the best way to find out if he's having intolerance issues is to eliminate the suspected food from his diet. She said if we haven't had an changes then she wants to do bloodwork at that point.
OH - and she also said he's NOT ADD. She said if she suspected it, she would tell me but she didn't see it in him. She also added that she feels that 'label' is slapped on kids too quickly these days when there might be something else going on.
So I'm overall happy with the appointment. No immediate answers, but definitly some steps that make sense!
One thing that I think helped me is having her support when I appraoch my son's school about doing these things (lactose / gluten). She said if they have any issues about him not having some official diagnosis on paper before doing it, to have them call her.
Thanks for the replies. I have an appointment tomorrow morning. I've written down everything that has been going on. I have no clue how familiar our family doctor is with food intolerances/celiac or even is one that will listen to me about the subject.
I think part of me is afraid that they will let it all go in one ear and out the other and again tell me that he's 'just 5' and chalk me up to 'another over worried mom'. I took him in when he was 3 with similar issues at the pressing of his teacher (I think she was looking for an ADD diagnosis) and the doc's diagnosis was that 'he was 3'.
I also fear they won't be willing to test or be open-minded about it all. And as weird as this sounds, I would be okay if the tests came back that he does have some kind of food intolerance because then I will then at least have an ANSWER.
My son has really been having troubles in school...he's fine most of the time but every once in awhile he'll get upset and act out and seems irritable often. Usually after lunch time. He's tired a lot and often falls asleep at school (he's in preschool starts kinder this fall). He's a picky eater and doesn't usually eat much. He likes to snack rather than eat a meal. Lately he always seems to be sick so often...stomach bugs, colds, strep..., he often complains about his tummy hurting, has sparatic bouts of diarhea...then constipation, he has a sore in his mouth that won't go away (canker type). I feel like I'm nuts to think this could possibly be celiac but the more I read, the more I think I need to check.
His dad has never been tested for celiac but has HORRIBLE stomache issues...sometimes can't even finish a meal before he heads to the potty. Now I'm wondering if he might have issues with it too?
I looked at the school menues and can confirm that each day he's had problems, they have had food with gluten. But perhaps it's something else. Perhaps it's just his attitude. I'm so exhausted with his irritability and him getting in trouble at school. I have an appt set up for a week from now but am calling today to see if I can get it moved up.