How Do You Explain A New Diagnosis To Your Child?

[kb27]

My 8 yr old son was diagnosed as "probably celiac" from a blood test. He tested positive for the gene, and his transglut igA was > 100. We're waiting for an appt in February to get a biopsy.

He hasn't been very sick, but he's had problems with iron deficiencies all year that haven't responded to supplements - thus the testing.

Anyone have any advice on how to break the news to your child?

At the moment we haven't told him anything, because we want to wait for the results from the biopsy. Any advice on how much to tell him ahead of time? I was planning to explain what the procedure was for, but kind of leave it at that.

And any advice on taking the plunge and going gluten-free? I'm impressed by the options out there, but it's a little overwhelming, too.

Thanks!

[maximoo]

the biopsy is optional I hope you know. The Drs always make it seem like its mandatory. I did not get my kids (17 & 13) biopsied & just went gluten-free. Be mindful that up to 30% of biopsies will be a false negative. Do you need an official dx for school/camp purposes? Its a difficult decision & I struggled with it, but in the end I said NO . Th official DX wouldn't do anything for us as far as school lunches. (As long as the school offers salad they are complying (like who wants to eat salad everyday & my kids don't it eat anyway) So I simply pack their lunch even tho we qualify for free lunch I'm sure you will do what is best for your son. For me it was to not do the endoscope.

Just explain in simple terms what gluten is, & that it damages his insides. Teach him the vocabulary, have him help you prepare gluten-free foods. He can do things like separate lettuce, plop cookie dough on a sheet, (gluten-free of course) stir things, put things in a microwave, etc. It is a lot to absorb & mistakes will be made Just learn from them and move on. Most important of all he must not eat from other ppl's house or friends, without chking with you first.

Try not to have him :stand out" from his friends too much. He can have things like popcorn, lays chips snickers, hersheys. You can make gluten-free chkn nuggets, pizza, hot dogs are gluten-free--normal kids food. For parties he should bring his own.cup cake or gluten-free foods that are similar to what is being served.

Good luck!

[stanleymonkey]

our daughter has just turned 3 and we told her that there something in some foods called gluten and it was hurting her insides, if she kept eating it she might get really sick. We also told her that if anyone hives her food to say no thank your have to ask my mom first. She has anaphylactic allergies so she has been having this reinforced since she could talk. I told her she wouldn't have the same bread or pasta as before and some of her foods she might never be able to have again. Her response-can I still have my cheese and ice cream? ( we have always bought vegan and gluten free) can you find some bread and pastas can eat? When I told her yes to both she said okay and carried on playing with her toys. We have never had a single tear, and she even asks if I can find a way to make things for her,like lasagna. We include her in making things and make sure at least one dish at the table is safe for her and she is happy.

turns out she is the best advocate for herself at 3 yrs and 2 days old she says no even to her grandparents!

he may be upset at first, but he will get over it. He may also be feeling some symptoms he can't describe to you and realize how much better he feels. Our daughter turned round and told me her owies in her knees had gone, I didn't even know she had knee pain!

[kb27]

Thanks for sharing your experiences.

We're most likely going to wait until February before going gluten-free. We haven't even seen a GI yet - just his regular pediatrician and a pediatric hematologist (his main problem is anemia). The hematologist made the diagnosis, but she was very clear that it was a "probably celiac" diagnosis, not a diagnosis of celiac. I didn't realize the false negatives from the biopsy were so high though - good to know.

I'm kind of hoping this might explain other weird health issues he's been having, but that's probably just wishful thinking.

Did you get the rest of your family tested after a diagnosis for your kids?

[Darn210]

If you are going to get the biopsy, he MUST stay on gluten to have the best chance for an accurate result.

I will also say that I had to have a diagnosis/note from the doctor for her school. I think I could have still gotten "some" arrangements made if I made enough noise about it . . . every time I needed to make a request. However, with the diagnosis, it's been pretty easy working with the school. (I will say that is not everyone's experience based on what I have read here in the past.)

As far as telling him . . . when my daughter was diagnosed, we were totally caught off guard as I didn't even know she was being screened for Celiac disease. The doctor thought she had Eosinophilic Esophagitis. I told her that she would still be able to have the foods that she liked (like chicken nuggets) she would just have to have them at home. In the first year, I know I overcompensated when we were out of the house with "treats" like skittles from the concession stand at a soccer game or a box of Nerds at the movies or a Wendy's frosty so she could see that there was still plenty that she could have away from home.

[mommyto2kids]

Find out if there other kids in his class with a food issue. My son has one kid with a tree nut allergy, another with a milk allergy. He is highly sensitive to chocolate and red dye. He was tested for celiac but didn't test positive. But if there are some others with eating issues, your son wont feel as alone.

[Juliebove]

I didn't have to because the Dr. did. My daughter was 6 at the time. She has allergies though. Not celiac. He gave her a list. Such as... Instead of this, eat that. Made it easy for her to understand.

[kb27]

I didn't think about the doctor telling him. We'll probably prep him before the biopsy with some info. And follow up later with more.

I like the idea of a note to go into his permanent record at school and finding other kids with dietary restrictions in his class.

I'm taking notes. Thanks!

[maramelia]

I didn't think about the doctor telling him. We'll probably prep him before the biopsy with some info. And follow up later with more.

I like the idea of a note to go into his permanent record at school and finding other kids with dietary restrictions in his class.

I'm taking notes. Thanks!

hi kb!!!!

in the case of my boy, he is 6, and we discovered last month... he did the biopsy, because his case was very difficult to screen, few GI symptoms, short stature as the main symptom, some other symptoms (persistent anemia, a strange acquired hypothyroidism... ), and I'm a doctor, i do neurology, and i do know that the biopsy with endoscopy is a very light procedure, we went to the clinic at 7am and came back to home at 9am... and the procedure itself is very simple... if it is positive, you re sure about the issue, you later may have reports etc... only if it is negative, and even if you are not sure, you may do the test, gluten free diet.

MAIN THING: its important to do the biopsy with NORMAL DIET...

first: if you and your child plan to do the biopsy, better not change the diet, because it is hard to go back to gluten, if he stays good on gluten free diet.

second: i decide to do the biopsy because we had to go to other sort of screening (GH deficiency), if this biopsy would come negative... so we HAD TO DO IT...

last thing: with my boy, i told him that gluten was a little thing that was in breads, cookies and some sort of foods, and that this little thing caused his abdominal pain, hurries to go to restrooms, and it was important to him to eat only no gluten foods. here in brazil we have a regulation from our FDA that every industrialized food must have: nor gluten free or this have gluten... so we said to him (my boy) that was very important for him to read this terms on the foods, and this is now a sort of play for him (he is on the phase of starting to read everything)... so he is loving it...

and my boy is a lovely boy, and he is doing his diet very good... he worry about any food which do not contain the terms gluten or no gluten... it is funny, sometimes... he told us: I'm lucky, coke does not have gluten!!!! so lovely...

in the case of our son, he is with a very small short stature, so we said to him it is important to do the diet, to be strong, and to grow like his colleagues... maybe later, we he grow to 9-10-12yrs, we can tell him that it is important to do the diet, not to eat pizzas and burgers to maintain his growth, not to be short... not now, we think... he is so young... and this does not matter to him for while...

hope to help you...

regards, mmara