Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What Are The Possiblities


Moongirl

Recommended Posts

Moongirl Community Regular

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.... :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
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.

jerseyangel Proficient

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!

Carriefaith Enthusiast
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)
Moongirl Community Regular

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....

Rachel--24 Collaborator
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.

Moongirl Community Regular

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:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast
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.

Moongirl Community Regular

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

Carriefaith Enthusiast
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.
bluelotus Contributor
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.

Moongirl Community Regular

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:

Carriefaith Enthusiast
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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,552
    • Most Online (within 30 mins)
      7,748

    ABA Steps LLC
    Newest Member
    ABA Steps LLC
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @TexasCeliacNewbie! The test results you posted strongly point to celiac disease. It is likely that your physician will want to perform an endoscopy with biopsy of the small bowel lining to confirm the results of the celiac antibody bloodwork results you just posted. It is important that you not cut back on gluten consumption until the endoscopy/biopsy is complete, assuming, that is, one is forthcoming.  Can you post the actual reference ranges used by the lab for the tests to determine positive/negative/normal/high/low? Scales used by these labs are different from one place to the other so the raw numbers don't mean much without the scale used by the lab. There aren't industry standards for this. By the way, you probably won't be able to edit the original post so please post the extra info in new post. May we ask about the cancer you mentioned? There are some things that can elevate the antibody test scores, at least mildly, besides celiac disease.
    • TexasCeliacNewbie
      Hi, I have been having a lot of back pain and gut issues for 8 weeks or so.  I saw the GI on Monday and my results just came in from the lab.  Some of these number are high and off the little chart from the lab.  I am reading this correctly that I most likely have Celiac, right???  It would explain a lot of things for me that otherwise are worrying me that my previous cancer is recurring.  Thank you for all of your expertise in this area! Immunoglobulin A, Qn, Serum 140 (normal) Deamidated Gliadin Abs, IgA 256 (High) Deamidated Gliadin Abs, IgG 65 (High) t-Transglutaminase (tTG) IgA 31 (High) t-Transglutaminase (tTG) IgG 10 (High)
    • trents
      So, I would assume it means that if the risk of developing celiac disease in the general population is 1%, people with the DQ2 gene have a 10% risk of developing celiac disease. So, have you or your physician concluded that you have celiac disease?
    • TerryinCO
      Here's the test result I was refering to.  I may not be understanding this correctly.
    • trents
      Thanks for the update @TerryinCO! Would you elaborate what you mean when you say your genetic tests show that you are "10x higher" for developing celiac disease? 10x higher than what? There are two main genes, HLA-DQ2 and HLA-DQ8, that have been identified as providing the potential for developing celiac disease. Since 40% of the population carries one or both of these genes but only 1% of the population actually develops celiac disease, the genetic test cannot be used to diagnose celiac disease, simply to establish the potential for developing it. Gene testing is usually done to rule out celiac disease vs. NCGS (Non Celiac Gluten Sensitivity). In other words, if gluten consumption is definitely causing someone problems but they don't have the genetic potential for developing celiac disease then the diagnosis would be NCGS. We also know that having both DQ2 and DQ8 puts one at higher risk for developing celiac disease than having just one or the other. But I'm not sure I've ever seen it quantified as in "10x higher". Not sure what you mean by this.
×
×
  • Create New...