Update, biopsy results: Keep Kelly in your thoughts - Not Horse Related - Not Horse Related - Horse Community, Horse Pictures, Horse Forum and Information

Posted : 8/22/2009 1:22:11 AM

My 13 yr. old, Kelly has been having stomach pain for about a year on and off, mostly in the morning, not a breakfast person we figured but it got really bad while we were on vacation, usually right after eating. I got her in to our pediatrician who's also a gastroenterologist, when we got back and he started doing lots of tests. Everything has been coming back normal but today he called and the test came back positive for celiac disease. Normal is .3 and hers was 100, so now we go in for more testing...... If she does have it, it means no more gluten or wheat products for her. I know it could be worse, something incurable but I really don't wish this on my daughter as it makes diet difficult. So, anyways, keep her in your thoughts that she had a false positive.......

UPDATE: Well, got the results for Kelly's biopsy and they were positive so, she definitely has celiac disease. While it breaks my heart to have anything wrong with her at all, I am at least glad we are done with tests and have an answer and it isn't something life threatening. Already got one of those, with Shay and her heart disease! We go in to the gastrointerologist on Monday and discuss what we do. I've already got her eating pretty much gluten free since the biopsy and she seems to be feeling better

New adventure in cooking for me, start experimenting with different kinds of flours, etc. Last night we had teriyaki flank steak, baked potatoes and salad. Not bad, for gluten free, just miss my rolls

but on we go!

TanyaC97

Posted : 8/22/2009 2:16:22 AM

Of course we will keep Kelly in our thoughts.

My sis-out-law (no not a typo) and a few of my friends have this. Once under control they all felt a ton better. I will say one of my friends has to worry about cross-contamination of foods when cooking for her family more than the others have too, but hers was so bad when she was diagnosed she was in the hospital for a few days too.

Once Kelly gets used to it, she will feel better.

hunterseat

Posted : 8/22/2009 12:02:03 PM

Hang in there Kelly, my little rider-extraordinaire!

Seems more like a food allergy or sensitivity than a disease. If the food you eat makes you sick and you can change what you eat and be all better, it doesn't sound so bad. My oldest son's sensitivity to arificial colors and flavors caused him a TON of behavioral problems. Once we fixed his diet he was like a different child - the one God meant for him to be. I think you'll figure this whole eating thing out and pretty soon it'll be no big deal. You'll be an expert at reading labels and pot-lucks are more BYOF. NO CHEATING!!! [ ':)'

]

mom2rumthewarmblood

Posted : 8/25/2009 4:05:36 PM

And gluten is just about in everything we eat!

My daughter had a sensitivity to gluten when she was 7 to about 11 years old. She rarely has issues with it and some kids do grow out of it. Unfortunately for her, pizza was a real culprit.

Luckily, there is more awareness these days so you can find gluten free food even at the local grocery store, not just the natural foods store. It is challenging, that is for sure. Do your research, there is lots of info out there.

Is she also lactose intolerant? That usually goes along with the celiac disease. If you haven't considered that, you might want to start cutting out cow's milk when you cut out the gluten.

danastark

Posted : 8/26/2009 12:45:58 AM

Hi Mom!! It's so good to hear from you! I'll be taking my eldest up to college in a couple weeks..... It's bittersweet.

Thanks for your thoughts. I'll mention the lactose intolerance thing to the Dr. when we go in next week. The thing I'm sooo glad about is that it isn't life threatening, even if she might be uncomfortable, she can make mistakes and learn from them, unlike my older sister who has diabetes. So, we're grateful for that. Seems like each kid has their thing........

Glad to hear your daughter got a good roommate and parents to boot ':)'

mom2rumthewarmblood

Posted : 8/31/2009 2:08:56 PM

Thanks Dana!

Did you have fun dorm room shopping? OMG, we started in the early summer. Got a lot of stuff on Overstock.com, then hit Big Lots when they put out their school stuff, it was a fluke but I got lots of school supplies and organizers. We really didn't know what she would need so I had to guess. Some things she couldn't use but they are closet organizers and I can always use them at home or she can use them later on.

Where is your daughter going? Laurel is at Sweet Briar College, an all women's college in VA. She is doing great, loves her roommate and doesn't seem homesick at all..............it sure was bittersweet taking her, though...........

danastark

Posted : 9/2/2009 3:28:52 AM

Kelly goes in for a small intestine biopsy in the next 2 weeks, just waiting for the call. Send brave thoughts her way ':)'

At least we'll have an answer but it is scary any time anyone goes under anesthesia.......

Mom-Yep, we did some dorm room shopping. I think we just have a quilt and seems like there was one other item she needed left. We needed bedding, towels, trash can, lamp, hot water pot, I forget what else. She's going to University of CA, Santa Barbara. It's an amazing campus, perched on the cliffs. My dad, mom, aunt and several uncles went there. I don't think she's going to be homesick. She's been majorly grounded all summer so she's going to be so happy to not have a curfew, etc....... Sigh..... guess that's part of growing up and becoming independent. It's about 3 1/2 hrs. from here so far enough that she has to be somewhat independent but close enough in case of an emergency or if she just wants to come home for a little bit.

mom2rumthewarmblood

Posted : 9/2/2009 2:06:09 PM

Best wishes to Kelly for her biopsy........

hunterseat

Posted : 9/2/2009 8:58:14 PM

A lady at my former church can't have gluten/wheat. I found a bunch of recipes out there! There was a rice cake... an actual cake made of rice... anyway, I thought that looked yummy. I know there is a Japanese dessert I love made with steamed rice flour/dough. Not everyone likes it but it's all over Japan. Usually they have something inside of it.

lisakaye

Posted : 9/12/2009 12:03:17 AM

Prayers for Kelly. I hope everything goes well for the biopsy.

danastark

Posted : 9/12/2009 2:25:39 AM

Kelly's small intestine biopsy is scheduled for Sept. 23rd. Wish we didn't have to wait so long, can't change her diet until AFTER the biopsy so she's stuck feeling uncomfortable/miserable until then...... Put in for a day of leave and my nice VP approved it ':)'

Remali

Posted : 9/15/2009 4:18:02 AM

Sorry to hear she has celiac disease, my doctor recently tested me for that (I've been having some GI troubles), but so far it does not look like celiac for me.

Hopefully with the right diet she will start feeling better, and after the biopsy things will get better too.

danastark

Posted : 10/3/2009 5:11:00 AM

BUMP-Update in first post.

samsara

Posted : 10/3/2009 8:15:34 AM

Glad to hear you at least know what the problem is. I know a few people with celiac disease. Fortunately, there is a lot more Gluten-Free stuff out there... you can even get mac and cheese! I just got done making gluten free dog treats (my parent's dog is sensitive to it)... I used soy flour. It was my first experience with it... it doesn't work quite the same as regular flour. I bet you'll get to have all kinds of fun adventures in cooking now! Good Luck!

cowgirldude

Posted : 10/23/2009 2:10:41 PM

I just now saw this post. I'm very sorry to hear she has Celiac Disease. At one point, we thought I had it. The test proved negative, but let me tell everyone, being on a diet for Celiac is NO fun. For some people, even if you get a dusting of flour or anything that contains gluten in it, it can make you sick. Licking envelopes is a no-no as are other daily things we do.

I hope she and your family make the transition well and she begins feeling better. I suffer from IBS, and even my type of diet is difficult, not just for me, but friends and family as well.