Celiac / Endoscopy Help please

amother

Mon, Oct 26 2020, 2:32 pm

One of my kids had bloodwork that showed a positive indication for celiac so now we have to go for an endoscopy. I know nothing is definitive yet but the diagnosis explains his symptoms and I'm the type that needs to plan and get used to things so I'm going on the assumption that they do have celiac. I've been tearing up all day and I'm trying not so successfully to calm myself down before my kids come home. I know there are many worse things in life but I feel so terrible for my child both for the endoscopy and for the food changes he's going to have to make while everyone else in the family doesn't. I already have picky eaters and this is just going to make it more challenging. And then of course I feel guilty for making this about me when it really isn't.

amother

Babyblue

Mon, Oct 26 2020, 2:48 pm

So I had the same situation and in the end, the endoscopy showed that it wasn't Celiac bh. And her blood levels returned to normal. So keep in mind that there is that option.
How old is your child? I think that makes a big difference. Younger kids have an easier time adjusting to this new normal. I just kept telling myself, how so many people deal with this and are ok.
Also, I wouldn't say that this is only about your child. It is also definitely very much about you!! You are the parent. It is downright hard watching your child going through something painful and/or uncomfortable. Additionally, you will likely be the one shopping, preparing his food and dealing with his frustration that comes along with it.
For now, I wouldn't panic just yet. Wait for the results before you continue worrying. And if it means they eat gluten another week or two until you figure it out, that is ok! They've been eating gluten until now.
Lots and lots of luck.

amother

Maroon

Mon, Oct 26 2020, 3:03 pm

Regarding the endoscopy, my daughter had one a few weeks and it really was much easier than we anticipated. She actually had a colonoscopy at the same time as we are doing testing for IBD (her celiac test came back negative). She was most nervous about the IV, but the staff at the hospital was great and really put her at ease. Once the IV was in, it was smooth sailing. We were at the hospital for less than 3 hours total and she was totally fine that afternoon! If you have any other questions, please let me know.

Any change in diet is a hard adjustment, but once you get used to it, it becomes the "new normal." How old is your son? Kids will eventually understand how necessary the diet is because they don't want to feel sick. The donut or bagel or roll will not be worth it to them as they know it will be followed by hours of pain. BH we do have an incredible assortment of gluten free products readily available at stores, so it is not as hard to find substitute foods.

amother

Amber

Mon, Oct 26 2020, 3:41 pm

My kids are gluten free. I only bake yummy stuff with gluten free flour.
Also, once your child is off gluten he will very likely imrove his eating habits! (Or get addicted to dairy. Wich can have a similar effect on the body)
My kids are off both. We have decent eaters since.
Salads. Soups. Good Proteins. Fruits. Smothies.... Yum!

amother

Orchid

Mon, Oct 26 2020, 3:50 pm

My dd had her endoscopy done by age 9 and it came back positive celiac.

I was devastated and didn't stop crying. She is a very picky eater and now at age 16 still eats little. We all love cake and cookies and we bake a lot. I couldn't imagine life without flour and gluten. I felt terrible for her her social life and cried non stop.

It was a hard first year, every Yom tov was a new thing trying to figure it out. But I must say it doesn't affect us in the least.

It did take time to figure out what she likes and how to go about it but it's really not a big deal (it sounds crazy but true) she went to sleep away camp every summer and she figured it out

Hope you get negative results but remember to take one day at a time.

If you need any help I'd be happy to offer you whatever info you need re flours and products and baking tips.

.

Iymnok

Mon, Oct 26 2020, 3:58 pm

We did it in the beginning of the summer at Shaarei Tzedek. DD was 4 1/2. It was very likely that had celiac. The procedure was quick, the doctors were nice, they gave her bubbles to make her happy and even let me blow them in the room to calm her down.
After she woke up she had to eat and drink to prove that she wouldn’t throw up from the anesthesia. On the way home we talked about the special foods she will get because gluten hurts her tummy.
She does not like the GF breads at all. She brings rice cakes to gan for lunch.
All vegetables, dairy, meat, chicken, fish, fruits, eggs, rice and legumes are great. That’s most things. If I make something for her, she will try it because it’s special.
It requires creativity, but the whole family benefits.
In the beginning I checked out the GF section of every grocery store and health food store. I also know which neighbors and friends also are gluten-free. It helps to get local tips as well as someone to trade with when you get a product that your kid doesn’t like and vice versa.

amother

Mon, Oct 26 2020, 4:02 pm

He's 5. He's one of the youngest so I have big kids and assuming it is positive I can't make the house gluten free I don't think it would be fair to my other kids.
We were told he needs to eat normally until the endoscopy or it could skew the results and I'm still working on finding a GI for the test so I have at least a couple more weeks of gluten even if he does have celiac.

momaof2

Mon, Oct 26 2020, 4:36 pm

Hey Op,
My daughter was diagnosed with celiac at age 2.5 after positive bloodwork and endoscopy. Bh the endoscopy itself is not such a big deal. I was crying in the or when my daughter fell asleep. But the recovery was very fast bh.
Since she's gf I've been cooking and baking for my family only gf food.

It's a major change, takes time to get used to, but there's so many delicious food!

Pm me anytime regarding recipes 😊

Cheshire cat

Mon, Oct 26 2020, 5:41 pm

Hi!

My dd was diagnosed as a toddler.

There is a learning curve, both practical and emotional. I had to figure out a way to make it work for my entire family- and we like our gluten!

It's been several years now, and things run like clockwork. I cook more healthfully and more thoughtfully as a result of my daughter's condition, and I've also learned to buy specialty items for her to simplify things.

It gets easier. Hatzlacha!

Iymnok

Mon, Oct 26 2020, 6:26 pm

I cook mostly normal for the rest of my family. I choose the GF option, rice or potatoes over couscous or pasta, for example.
I buy GF soy sauce.
She gets more grape juice for Kiddush to replace challah.
I’ve been doing it only five months and I feel that it only took a couple months to get the hang of it.
Make him feel special about his condition.

amother

Pink

Mon, Oct 26 2020, 9:57 pm

I’m in same position as you. My daughter is only three. My pediatrician wants me to retake bloodwork again in three weeks before I do the endoscopy. She complains terribly about her stomach and legs hurt. I seriously hope it turns out to be nothing because I already have other allergic children that need separate diets so I seriously can’t imagine cooking gluten free.

Good luck on the test and keep us posted.

amother

Orchid

Mon, Oct 26 2020, 10:47 pm

I just wanted to reassure you, it's not as hard to cook gf for the entire family, they don't loose out.
My family loves cake cookies and gluten so I couldn't imagine it but really it's all good!

Certain things are harder to replace or camouflage so I make 2 separate but mainly I cook once. I found gf Crumbs that we love for breaded chicken or eggplant. Gf noodles are available some are good. Kneidel mix gf is good. There are loads and loads of breads and bagels and flour mixes. You will eventually figure it.

Please try to take day by day. Don't worry about your older kids.