New And Need Support

[Guest wanaenjoylife]

Hey everbody,

I am new to this site. I am 16 yrs old and live in Los Angeles. I have been run through the mill with my health and what we now think is Celiac. I have every symptom, textbook. I am about to have Enterolab tests because I want to know for sure. I just want to talk to people...my aim sn is knsgoestonz511 or my email is knshore@hotmail.com.

Please email me...i would love to talk!

Kassandra

[GeoffCJ]

Hey everbody,

I am new to this site. I am 16 yrs old and live in Los Angeles. I have been run through the mill with my health and what we now think is Celiac. I have every symptom, textbook. I am about to have Enterolab tests because I want to know for sure. I just want to talk to people...my aim sn is knsgoestonz511 or my email is knshore@hotmail.com.

Please email me...i would love to talk!

Kassandra

Kassandra,

Good luck getting everything figured out. If you can afford it, I'd get the package that includes Casein and other sensitivities. I figure the more information the better!

Have you had the blood test or a biopsy?

Geoff

[Guest wanaenjoylife]

Hello,

Thanks for responding. I had blood tests but I was gluten free at the time so they came back negative. I have been dairy free for a few weeks and that helps. I found out my dad has had colitis, IBS (which i also have...but it could be mis dx'd celiac) I am gluten-free right now, but I keep thinking im gluten-free, but i keep finding hidden stuff in everything! I am going to try to get the enterolab thing, but we have over $15,000 in medical bills for me becuase of my stomach and i have spine disorder, AND my anemia was so bad i had to have IV trasfusions of Iron which insurance didnt cover. Sorry, im ranting. Im so relieved people understand what im going through.

[GeoffCJ]

Hello,

Thanks for responding. I had blood tests but I was gluten free at the time so they came back negative. I have been dairy free for a few weeks and that helps. I found out my dad has had colitis, IBS (which i also have...but it could be mis dx'd celiac) I am gluten-free right now, but I keep thinking im gluten-free, but i keep finding hidden stuff in everything! I am going to try to get the enterolab thing, but we have over $15,000 in medical bills for me becuase of my stomach and i have spine disorder, AND my anemia was so bad i had to have IV trasfusions of Iron which insurance didnt cover. Sorry, im ranting. Im so relieved people understand what im going through.

Wow. That's grim. I can sympathize a little, it took me 10-12 years to figure things out. Luckily my hardships weren't as bad as some.

My suggestion would be that with your symptoms, you can save some money by not ordering any tests. You've mentioned that Dairy free has helped, has gluten free? I felt a pretty immediate improvement for a few months, but now seem to be reacting to dairy (NOOOOOOOOOOOO! I love my cheese and ice cream). The dietary test is a good one.

I had a negative blood test while gluten free, but a biopsy that showed clear damage, and postive tests through enterolab. But with all that, even if I had had negatives on all of them, the dietary response was so strong and so clear that it would have been impossible to convince me to go back to gluten. I was variously diagnosed over the years with several different things, including IBS. Pretty sure my Dr. had hypochondriac in my charts!

This is a good place to get information, and a sympathetic ear. I thought I had the most jacked up stomach around until I started reading this site. => Now I feel kind of "lucky" that I'm not having issues with EVERYTHING.

Geoff

[Guest wanaenjoylife]

We are going to try to get enterolab so we kknow if i have celiac or not. we also should be getting better insurance soon, so when we do that, i want to have an endoscopy to see if theres any damage or not. and thanks for respsnding...its so nice to feel like people understand what im going through. I have been gluten-free, and have noticed a difference. Well, its slow and i dont really know yet. But it hasnt really even been a whole week, so i need to give it more time. but when ur in as much stomach pain as i am, its REALLLLLLY hard.

[Ashley]

Hello, hello.

To me, it wouldn't matter if I knew if I had Celiac or not---if going gluten-free is going to make you feel better, then by all means just cut out the gluten and say forget the entrolab. I understand the pain, I lost 70+ lbs because of it was so painful for me to eat. If you're going gluten-free and taking the entrolab, then it's going to lower your levels and possibly give you false results. If you're really wanting to get the best results for an entrolab, then it would be best to reintroduce gluten back into your diet.

I never had any entrolab done, I was dx'd by upper endoscopy. It was amazing to see what damage my villi went through. They were complete dull and hardly any of it left. Personally, I think having the endoscopy is a better route to go through than the entrolab.

It seems you have a lot of on your plate when it comes to keeping your health in check I hope things become better and you get some relief.

-Ash

[Guest wanaenjoylife]

Hello, hello.

To me, it wouldn't matter if I knew if I had Celiac or not---if going gluten-free is going to make you feel better, then by all means just cut out the gluten and say forget the entrolab. I understand the pain, I lost 70+ lbs because of it was so painful for me to eat. If you're going gluten-free and taking the entrolab, then it's going to lower your levels and possibly give you false results. If you're really wanting to get the best results for an entrolab, then it would be best to reintroduce gluten back into your diet.

I never had any entrolab done, I was dx'd by upper endoscopy. It was amazing to see what damage my villi went through. They were complete dull and hardly any of it left. Personally, I think having the endoscopy is a better route to go through than the entrolab.

It seems you have a lot of on your plate when it comes to keeping your health in check I hope things become better and you get some relief.

-Ash

Yea, it has been crazy. I didnt have any idea all of this could come with celiac. the reason we want to do enterolab is so insurance doesnt know. if they do, i wont ever be able to get insurance. our thinking is that once we find out from enterolab and we get new insurance...i will have an endoscopy so it wont be "preexisting"

Kassandra

[Kassie]

hi kassandra! i just thought i would mention that kassandra is my name too, but everyone calls me kassie. i will be 16 in 30 days (may 31). how long have you been suffering from symptoms? well i hope you get things figured out with your diagnosis stuff.

[confusedks]

hi kassandra! i just thought i would mention that kassandra is my name too, but everyone calls me kassie. i will be 16 in 30 days (may 31). how long have you been suffering from symptoms? well i hope you get things figured out with your diagnosis stuff.

Hey. I have been suffering from symptoms my whole life. They thought I had an ulcer and ibs and I am stuck in an endless battle with anemia. I had iron IV treatments about a month ago and now we think I'm anemic again!!!! Thanks for letting me rant. I'm so sick and tired of being sick and tired. Kassie where do you live and what do you eat for lunch at school?

[Kassie]

Hey. I have been suffering from symptoms my whole life. They thought I had an ulcer and ibs and I am stuck in an endless battle with anemia. I had iron IV treatments about a month ago and now we think I'm anemic again!!!! Thanks for letting me rant. I'm so sick and tired of being sick and tired. Kassie where do you live and what do you eat for lunch at school?

i live in Idaho. what about you, where are you from and how old are you? for lunch i bring rice cakes with peanutbutter, sandwhiches made with gluten-free bread, ham lettuce roll ups, chips with a dip, gluten-free crackers with pb, cereal and buy milk at the school, leftovers sometimes (that kinda grosses me out to eat cold), muffins(homemade), salads.

along with a main dish like up above i always bring 1 or 2 small things like fruit, string cheese, carrots, cookies, pudding, baked goodies, etc.

so have you been diagnosed with celiac?

[confusedks]

i live in Idaho. what about you, where are you from and how old are you? for lunch i bring rice cakes with peanutbutter, sandwhiches made with gluten-free bread, ham lettuce roll ups, chips with a dip, gluten-free crackers with pb, cereal and buy milk at the school, leftovers sometimes (that kinda grosses me out to eat cold), muffins(homemade), salads.

along with a main dish like up above i always bring 1 or 2 small things like fruit, string cheese, carrots, cookies, pudding, baked goodies, etc.

so have you been diagnosed with celiac?

Thanks for that...its always hard to figure out what to bring to school for lunch. The only problem is i'm dairy free too, so its really restrictive. I am 16 (17 in 2 months from today!!!! ) I live in Los Angeles. I haven't been diagnosed with celiac. i had negative bloodwork which my dr says i dont have celiac. my grandma has it for sure, we think my dad has it and my mom also. i sent in for enterolab and am waiting to get the package to then send it back. We are also trying to get me into get allergy prick-testing. we think i have a soy or corn allergy. btw, i dont have a nickname, but if i did, it would be Kassie, with a K!!!!!!!!!!!! lol.

[Kassie]

confusedks

i am totally confused. are you the same person as wannaenjoylife? just wondering lol

[confusedks]

i am totally confused. are you the same person as wannaenjoylife? just wondering lol

yea, i set up confusedks first, but never got the email to activate it, so then i set up wanaenjoylife on a different email address, and got the confirmation, so i used that one for a little. then i tried signing in for confusedks and it worked!!! go figure. lol