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What Are The Possiblities


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12 replies to this topic

#1 Moongirl

 
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Posted 05 December 2005 - 02:39 PM

So ive been reading a lot of your new posts, so i thought i would share my own history....
I have had my fair share of medical problems, im 26 (female) now and have had a (big) benign cyst removed from my breast, tonsils removed, gall bladder removed (due to a polyp, not stones), and an osteoma (small bone growth)removed from my skull.
After all this i finally thought i was getting better, until one summer I woke up with this lumpy feeling in my throat. 6 months later, 20 pounds lighter (im 5'3 normally 125lbs), i was freaking out, started to have anxiety issues, many ER visits later, people told me i was just stressed out! ok so i relaxed went to a therapist for my anxiety, things got better, lumpiness went away....was tested for everything, thyroids and all but nothing. weight stayed around 105 for about a year, low for me, but pretty normal for my size. but i nevered gained any weight, and believe me i eat! :rolleyes:
SO now my mother got diagnosed with celiac disease a year ago....and for about the same amount of time i have been having these really dull, burning Aches on my RIGHT LOWER (almost near my ovary) side, not all the time, but they last a few hours when i get them, along with consistant constipation. Recently it has been annoying me a little more, so i went to the same GI as my mother, he told me that it may be IBS gave me a blood test anyways for celiac since my mother has it. WELL it came back positive and now i have to go to and endo this week. i dont know what the chances are, but im crossing my fingers....but it would be nice to explaing my weight loss and side pains..... ;)
THanks for any advice.... :)
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#2 Rachel--24

 
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Posted 05 December 2005 - 02:47 PM

So ive been reading a lot of your new posts, so i thought i would share my own history....
I have had my fair share of medical problems, im 26 (female) now and have had a (big) benign cyst removed from my breast, tonsils removed, gall bladder removed (due to a polyp, not stones), and an osteoma (small bone growth)removed from my skull.
After all this i finally thought i was getting better, until one summer I woke up with this lumpy feeling in my throat. 6 months later, 20 pounds lighter (im 5'3 normally 125lbs), i was freaking out, started to have anxiety issues, many ER visits later, people told me i was just stressed out! ok so i relaxed went to a therapist for my anxiety, things got better, lumpiness went away....was tested for everything, thyroids and all but nothing. weight stayed around 105 for about a year, low for me, but pretty normal for my size. but i nevered gained any weight, and believe me i eat! :rolleyes:
SO now my mother got diagnosed with celiac disease a year ago....and for about the same amount of time i have been having these really dull, burning Aches on my RIGHT LOWER (almost near my ovary) side, not all the time, but they last a few hours when i get them, along with consistant constipation. Recently it has been annoying me a little more, so i went to the same GI as my mother, he told me that it may be IBS gave me a blood test anyways for celiac since my mother has it. WELL it came back positive and now i have to go to and endo this week. i dont know what the chances are, but im crossing my fingers....but it would be nice to explaing my weight loss and side pains..... ;)
THanks for any advice.... :)


Well...it sounds like you have Celiac Disease. The chances are high since your mom has it and the fact that your bloodtest was positive pretty much confirms it. Even if your biopsy is negative its very likely you have Celiac. The biopsy cant rule out celiac...it can only rule it in. If you are in the beginning stages you may not have visible damage yet or the damage can easily be missed if its sporadic.
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Rachel

#3 jerseyangel

 
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Posted 05 December 2005 - 02:57 PM

Hi and welcome :) From the sound of your symptoms, the positive blood result and your mom's DX, there's a strong possibility as you already know. Keep in mind that the biopsy can miss damage--maybe too soon to show damage or the Dr. can miss the damaged areas. That does not mean that you do not have Celiac--no matter what the results of the biopsy are. Best of luck!
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#4 Carriefaith

 
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Posted 05 December 2005 - 03:09 PM

WELL it came back positive and now i have to go to and endo this week. i dont know what the chances are, but im crossing my fingers....but it would be nice to explaing my weight loss and side pains.....

If the blood tests came back positive than you most likely have celiac disease, especially if your mom has it too. You should feel so much better after a few months on the gluten free diet. If you ever need any need any gluten free product lists, recipes, or meal ideas to get you started please ask and we will help B)
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#5 Moongirl

 
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Posted 05 December 2005 - 03:12 PM

tnx for the info, yah im just nervous that my endo will come up negative and i wont be diagnosed....then what?? for the most part im healthy....just weight gain is an issue with me....never had a blood test that came back with anything (in regards to blood count, nutrients) . i eat pasta and most things and im ok....only problem ive been watching is when i eat bread thats when my side pains flair up....all this time i thought is was due to my gall bladder being removed!?! go figure!!! :huh:

one more thing,
i know that food has to be gluten free, but what about lotions, shampoo, etc....

Edited by Moongirl, 05 December 2005 - 03:13 PM.

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Dx & gluten-free since 12/09/05

Positive blood and endo test
Boston, MA


What doesn't kill you, only makes you stronger

#6 Rachel--24

 
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Posted 05 December 2005 - 03:16 PM

tnx for the info, yah im just nervous that my endo will come up negative and i wont be diagnosed....then what??one more thing,
i know that food has to be gluten free, but what about lotions, shampoo, etc....


I think you are pretty much diagnosed since you had a positive bloodtest. Do you know what test was run? Some are more specific than others. I think regardless of the biopsy results you should get on the diet (after the test). Some doctors diagnose w/out having the biopsy done...its not really necessary given your symptoms, family history and positive bloodtests.

Yes, all that other stuff has to be gluten-free too...especially the stuff that is on your face and hands.
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#7 Moongirl

 
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Posted 05 December 2005 - 03:28 PM

oh boy this is going to be no fun...i have so much make up and body stuff from everywhere and im always out, i eat out so much.... :o how do you 20somethings deal with this lifestyle?? :blink:

Edited by Moongirl, 05 December 2005 - 03:29 PM.

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Dx & gluten-free since 12/09/05

Positive blood and endo test
Boston, MA


What doesn't kill you, only makes you stronger

#8 Carriefaith

 
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Posted 05 December 2005 - 03:30 PM

tnx for the info, yah im just nervous that my endo will come up negative and i wont be diagnosed....then what?? for the most part im healthy....just weight gain is an issue with me....never had a blood test that came back with anything (in regards to blood count, nutrients) . i eat pasta and most things and im ok....only problem ive been watching is when i eat bread thats when my side pains flair up....all this time i thought is was due to my gall bladder being removed!?! go figure!!! huh.gif

one more thing,
i know that food has to be gluten free, but what about lotions, shampoo, etc....


Villi damage in the small intestine can be patchy; therefore, they could miss damaged areas if they only take a few biopsies. Ask to see if your doctor can take at least 5 biopsies.

You should make sure all cosmetics that go near your mouth are gluten free such as shampoo, conditionor (shower), suncreen, make-up (sweating, lipstick), ect. I have used some of these products with gluten in them and it is risky. I got contaminated from suncreen with gluten in it before.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#9 Moongirl

 
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Posted 05 December 2005 - 03:40 PM

carrie-
so even lotions can still get into your system and give u problems, and here all i thought i only had to deal with food....
Well i could consider myself somewhat lucky, my bf owns a supermarket chain, so he brings home allll sorts of food, which most i can not touch, but i will have to take advantage of him so he can now start to bring in gluten-free stuff. :)
He tells me that the market is really starting to mainstream gluten-free food. Just today there was a new ice cream brought to him that was gluten-free.mmmm
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Dx & gluten-free since 12/09/05

Positive blood and endo test
Boston, MA


What doesn't kill you, only makes you stronger

#10 Carriefaith

 
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Posted 05 December 2005 - 03:49 PM

carrie-
so even lotions can still get into your system and give u problems, and here all i thought i only had to deal with food....
Well i could consider myself somewhat lucky, my bf owns a supermarket chain, so he brings home allll sorts of food, which most i can not touch, but i will have to take advantage of him so he can now start to bring in gluten-free stuff. smile.gif
He tells me that the market is really starting to mainstream gluten-free food. Just today there was a new ice cream brought to him that was gluten-free.mmmm

Yes, everything that you come in contact with should essentially be gluten free. I know it is hard to do this and I do use a few products that I am not sure about. I know that is bad, but I don't react to them and I will react to the slighest amount of gluten. You're lucky that you have a bf that owns a supermarket! You should get him to order you all the yummy foods, like Kinnickinick stuff.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#11 bluelotus

 
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Posted 05 December 2005 - 04:18 PM

Villi damage in the small intestine can be patchy; therefore, they could miss damaged areas if they only take a few biopsies. Ask to see if your doctor can take at least 5 biopsies.

You should make sure all cosmetics that go near your mouth are gluten free such as shampoo, conditionor (shower), suncreen, make-up (sweating, lipstick), ect. I have used some of these products with gluten in them and it is risky. I got contaminated from suncreen with gluten in it before.



What sunscreen did you use that had gluten? I suspected this past summer that mine might have had some as well. Do you know of any that are gluten-free? (Proactiv told me all their stuff was gluten-free, so I guess there's a face one that would work). Thanks in advance.
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#12 Moongirl

 
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Posted 05 December 2005 - 04:26 PM

Yes... anything that u can tell me that u use or that you know of that is gluten-free would be greatly appreciated....from chapstick, make-up to lotions, shampoos :wub:
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Dx & gluten-free since 12/09/05

Positive blood and endo test
Boston, MA


What doesn't kill you, only makes you stronger

#13 Carriefaith

 
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Posted 05 December 2005 - 04:29 PM

What sunscreen did you use that had gluten? I suspected this past summer that mine might have had some as well. Do you know of any that are gluten-free? (Proactiv told me all their stuff was gluten-free, so I guess there's a face one that would work). Thanks in advance.

The suncreen that I used was Neutrogena and it had oat extract in it. I've heard that Banana Boat if safe and I think Coppertone, but I am not 100% on that one.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004




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