Celiac?

Any moms with some advice? My almost 4 year old has been withhold stool past year making it tough to potty train. We finally decided to see a potty training specialist and GI with Stony Brook. My DS has no typical celiac symptoms but they ran blood work anyway because of family history of other autoimmunie disorders. Blood work came back positive and he is having an endoscopy next week to confirm the Dx. Can't go gluten free until after the procedure.

My DS is also having attention issues and behavior problems at school so I'm hoping going on the gluten free diet may help. I guess I just feel a little overwhelmed how to help him adjust. Especially at daycare. Next year he will go to UPK in our school district.

Also- anyone else use the Stony Brook GI docs?

Re: Celiac?

Hi there! My 7 year old daughter has celiac, she was diagnosed at 4. I live OOS so I can't help with LI-specific questions but if you have any celiac questions please let me know.

She was in kindergarten when she was diagnosed and our school is awesome with this stuff, they don't have birthday parties and the few class parties that they have are very allergy/celiac-friendly.

It's big news to digest and I cried for the first month or two, but I promise it gets easier and things will fall into place. Life will become packing food for everything, school, outings, vacations, etc.

There is another mom on here with a little boy with celiac, I'll send her a FB message to get her over here

Re: Celiac?

First off I'm sorry to hear. I know it's shocking. No one in my family has it, but my best friend had a false test where she thought she was after several stomach issues. Wound up being a problem after an appendix surgery she had years ago where the scar tissue formed on her uterus.
Our very close friends has a daughter who was recently diagnosed as well. She is 8 years old. Always small for her age. After bloodwork and endoscopy she was tested positive. THe rest of the family was tested as well and found out her father also has it. All these years and he never knew. They both changed their diet immediatly. We are very close with them so I keep a lot of food in the house for them.
We're in NJ so can't help with the hospital or school, but the school has been wonderful. There are lots of allergies in the school so they are sensitive with eating. I was a class mom last year in my DS's class and one girl had it so we made sure we bought gluten free snacks that her mother approved.
There are so many support groups and FB groups to join. There are a TON of options and you'll also find restaurants have a TON of GF options. I never noticed before. We were also in Disney with them and there was a ton they ate.
My friend who was misdiagnosed gave me a huge list to give to our other friends of foods she's tried and tested.
BTW - since she changed her eating my friend's DD who is small and still is had a little bit of a growth spurt too.
Hope you find a lot of the answers you're looking for and good luck.

Message edited 4/18/2018 7:47:11 AM.

Celiac?

Im so sorry, my mom, my sister and I have it. It has to be really hard but i promise the diet really will do wonders. Aldi Supermarket has an amazing selection of GF food. Their bread is by far the best of any other brand!

Re: Celiac?

Both of my kids tested high on the blood test (my daughter just did recently) We chose not to do the endoscopy because we thought it would be too invasive, and the tests were off the chart so good evidence that they had it, so we decided just to put them on a GF diet. They do make a lot of GF items nowadays.

Celiac?

my daughter is now 5 but diagnosed around 4 years of age. She's a completely different kid on the GF diet. It's not hard at all. So many GF options out there. We did the endoscopy and I am glad you are b/c if you ever dr documentation you will have it for school and such. You will beed it for school if you decide to put a 504 in place for him. I haven't done anything yet for school she starts K in Sept. The diet really has helped her, grow mentally and physically and she's not so grumpy any more lol

Celiac?

Thanks everyone who responded! I'm anxious for my DS to get the endoscopy so hopefully we can start the GF diet. I'm hoping it helps some of his GI symptoms. We plan at home to all eat gluten free. Good point about needing the dx for a 504. I didn't think about that. My DS already has an IEP for PT and SEIT services and may add to there for the upcoming school year.