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What Are The Possiblities
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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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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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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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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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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
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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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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
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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-

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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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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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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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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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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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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