Celiac?

[lauracitawita]

My DD7 has been having abdominal pain for about 3 weeks straight. She describes it as weird and very uncomfortable. She is often in tears with the pain. She also has a "weird" feeling in her throat.

She has had 3 ultrasounds, 2 urine samples, a stool sample and a blood test.

My doctor has now referred her to a pediatric specialist, but in the meantime has scheduled my daughter for a celiac screen.

Does anyone have any experience with this? Do the symtoms match up with celiac?

My daughter has missed so much school and other fun activities in the past month with this pain and I am so frustrated and worried about her.

Thanks

 

[DisneyBamaFan]

Symptoms could be so many things. They gave my youngest son a biopsy test for Celiac (the only way to be sure, per the doctor) and discovered that he had an H. Pylori infection. Same symptoms...

 

[lauracitawita]

hmmm...my dd is being tested for that as well.

So, did your son have a blood test for celiac first? I read that it could only be determined by a biopsy as well, but my doctor has a blood test scheduled only so far.

 

[DisneyBamaFan]

hmmm...my dd is being tested for that as well.

So, did your son have a blood test for celiac first? I read that it could only be determined by a biopsy as well, but my doctor has a blood test scheduled only so far.

Yes, and the results were "inconclusive". We were worried about all kinds of worst case diagnoses. This is actually one of the events in my life that taught me to stop worrying about things out of my control.

We are thankful for a diagnosis that allowed for a full cure of his illness, but my son is still a very picky eater (years later) because of the stomach pains that he suffered for about 9 months while the doctors tried to diagnose his condition...

 

[lauracitawita]

Yes, and the results were "inconclusive". We were worried about all kinds of worst case diagnoses. This is actually one of the events in my life that taught me to stop worrying about things out of my control.

We are thankful for a diagnosis that allowed for a full cure of his illness, but my son is still a very picky eater (years later) because of the stomach pains that he suffered for about 9 months while the doctors tried to diagnose his condition...

Thank you so much! This puts my mind at ease a little. I can't imagine 9 months of this. My daughter says she'll do anything...she just wants to know what it is so she can feel better again.

 

[pixiewings71]

My BFF has Celiac's, for 3 years she was "diagnosed" as having IBS. It was not IBS, she finally got a good dr who actually read her test results and sent her for additional testing and yup, Celiac's. Her symptoms are much like your DD's. She follows her diet well but sometimes goes off track and has breads or brownies but she's really good about it mostly. She found a really good bakery and gets her baked goods and her homemade pasta there. It's good stuff!! Good luck OP, I hope your DD is feeling better soon.

 

[Carl]

My BFF has Celiac's, for 3 years she was "diagnosed" as having IBS. It was not IBS, she finally got a good dr who actually read her test results and sent her for additional testing and yup, Celiac's. Her symptoms are much like your DD's. She follows her diet well but sometimes goes off track and has breads or brownies but she's really good about it mostly. She found a really good bakery and gets her baked goods and her homemade pasta there. It's good stuff!! Good luck OP, I hope your DD is feeling better soon.

I haven't found any good bread or pasta yet. However, I have found some good brownies, donuts, and cupcakes.

 

[pixiewings71]

Ya, Betty Crocker has a killer box mix for brownies, it's better then a regular box! LOL There's a website she uses, if I remember I'll ask her for it and post it for you.

 

[IngridRalph]

My daughter was diagnosed two years ago with the TTG blood test. Her numbers were very high and it was obvious.

For Bread we like the Udi's brand

For Pasta DeBoles is wonderful. The lasagna noodles and angel hair pasta are our favorites.

Best of luck to you in finding a solution to your childs pain.

~Ingrid

 

[DVCisME]

My levels were high and that is how I was diagnosed. One should really have the biopsy while still eating gluten (very important) to have an official diagnosis. If you daughter is having a blood test I would load her with bread.
I had very similar symptoms to your daughter for years and they thought it was related to me getting my period, than IBS. Just don't give up if you think what they are saying is not right. Best of luck! Eating gluten free is an adjustment but it is not the end of the world. And Disney is a great place to eat gluten free!

 

[Kathi OD]

I was diagnosed with Celiac disease (also called celiac sprue or just sprue) about 15 years ago. Back then, it was a very rare diagnosis, and a large percentage of people diagnosed with IBS really had celiac disease.

With celiac, the blood test "might" pick it up, but then again, maybe not. There are lots of false negatives. A biopsy is the only fool-proof way to be sure, although I understand why a doctor would do a blood test first, especially when dealing with a child.

Staying on the diet is of utmost importance, even if you don't have any symptoms when eating small amounts of foods containing gluten. The damage inside continues. Please, if your child is diagnosed, make sure he doesn't go off the diet....EVER! Celiac is not something that can be cured. It can only be managed through diet.

I'll agree with DVCisMe, Disney is great with the gluten-free options at their restaurants. Don't hesitate to ask your waiter/waitress about your options. In all likelihood, the chef will come to your table to discuss those options with you, even going so far to make something not on the menu to accommodate you.

 

[Carl]

Yes. Disney is great about it. They even have some gluten free gravy for their mashed potatoes at Liberty Tree Tavern. First, and last gravy I've had since being diagnosed with Celiac.