Jump to content
  • 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
      132,021
    • Most Online (within 30 mins)
      7,748

    maltawildcat
    Newest Member
    maltawildcat
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • NanCel
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.