Not Been Diagnosed Or Tested, But Suspecting Celiac...

[Rielyn]

I'm a 24 year old female and Ive been having some health issues but didnt suspect Celiacs til my friend asked if I've ever looked into it. I started researching and realized it would explain A LOT of my problems... Simple things even such as fatigue and the "brain fog" feeling... My Grama is constantly asking "Where is your head?" because I cant concentrate on much, and am super forgetful. :/

Some of the bigger health issues I am having are high prolactin levels (not diagnosed but for the last 2 years, my breasts leak fluid even though Ive never been pregnant or breastfed. I thought it was normal until a couple months ago.)

I've never had regular periods even after 13 years.

I feel bloated ALL THE TIME.

I am either constipated, or have diarrhea (changes all the time but seems to be no happy medium.)

And for the last 5 or so days, I've gotten sick after every time I eat. The feeling was constant for 3 days and now goes away for a bit, then is back full force after I eat anything.

I've also had sores in my mouth since last Wednesday... not canker sores maybe but sore red bumps on my tongue and white ones in my cheeks - not sure if they are related to everything else...

I just found out yesterday that I have insurance again, after 6 years without it and can finally go to the doctor... Now Im hoping that they will actually test me for celiac, or at least find out what else it could be.

Any thoughts are appreciated.

p.s. -I also recently asked and found out that Celiac runs in my Dads side of the family... an Uncle and 2 cousins.

[LauraB0927]

Yay that you got your insurance back! I'm still kind of new at this thing too since I was diagnosed in May of this year but this is what I would specifically request from the doctor -

- Tell him/her that you have Celiac in your family and you believe you are experiencing some symptoms, ask them to run a full Celiac blood panel. These are the blood panel tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

- Ask that your thyroid be checked too, as well as TSH, T3 and T4 levels - a lot of people with Celiac have thyroid issues, might as well get the blood test done at the same time.

- Ask that your vitamin A, B (all of them), D, E, and K levels are checked. A lot of us have problems absorbing them and it can really make you feel ill if you are deficient. If you are having a problem absorbing B vitamins it could be what is causing your fatigue.

Good luck and let us know how it turns out!!! Feel free to ask any questions....there are tons of people on here willing to help in any way they can...

[Rielyn]

Thanks so much for your answer! I'm waiting on my membership cards for the insurance, and then no telling how long it will be to get an appointment as the insurance is thru the county hospital outpatient clinics, but I'm hoping it won't take too long.

My biggest worry is that the doctor won't want to test... when my Grama saw doctors at the same place, it seemed they were all in a hurry to just diagnose and move on... she switched doctors offices but with my insurance I won't have that option. I guess it could go the other way though and because they are in a hurry - they'll just listen to me and get it done. I've read stories of the doctor just saying "Yep, sounds like you have Celiac, but why don't you try gluten free without the test and see if it helps." I actually want a diagnoses if I DO have it, and if I don't then I want to know what is going on anyway... not just have it assumed. I'll stay hopeful.

It would be nice to have so many things figured out and taken care of though... if it's as "easy" as going gluten free, I will actually be kind of excited! Lol

[GottaSki]

Welcome!

Just wanted to add...it is very important that you don't remove gluten from your diet until after testing is complete - eating gluten-free and even gluten light can effect the test results.

If all tests are negative, it is wise to remove ALL gluten for 3-6 months to monitor symptoms. Living gluten-free is often the best test.

Good Luck

[GottaSki]

I've read stories of the doctor just saying "Yep, sounds like you have Celiac, but why don't you try gluten free without the test and see if it helps."

IF you get a doctor that suggests a gluten-free trial without testing, you say something like:

"I have several classic symptoms of Celiac Disease, along with a family history. If I remove gluten from my diet, blood tests will no longer be accurate as I have to be eating gluten to produce the antibodies that are measured in the tests. Please reconsider ordering these tests so I have my best chance for an accurate diagnosis."

You are already doing your homework...take the time you have to wait for an appt to learn as much as you can. You may wind up with a doc that is familiar with Celiac, but if not your preparation could really help the diagnosis process.

[Rielyn]

Thank you, Gotta Ski! I did read about not starting Gluten free until after testing... Glad I read it because I was tempted to try it with how bad I've been feeling but I'm waiting it out.

I hope that I get a Doctor that's at least somewhat familiar with it. A lot of times here they send in a PA to see you, and if they don't know, they ask the doctor so maybe *someone* will be educated enough to test without an argument.

[LauraB0927]

Don't be afraid to be somewhat insistent to have the testing done - they hopefully shouldnt give you a hard time, its not like you're asking for a surgery to be done, just a few simple blood tests. I always remind myself that its MY body and I need to make sure my doctors are doing whats right for it.

I second the above comment - dont start eating gluten free until you've gotten the tests done. It will make your results less accurate and only leave you with more questions. Best wishes!!

[MitziG]

Yes, insist they do the tests. You are hiring THEM so no reason to let them call the shots. And be clear that you want the full panel done- print out the list of tests. Most docs only do 1 or 2 of the older, less specific, tests unless you insist.

[Rielyn]

Thanks! I'm not usually the type to speak up and insist things but I guess I will have to start considering it is about my health. The last time I went to an actual doctor, I was 16 and and it was to get a prescription for allergy pills, so I'm not very experienced in the area of talking to doctors. Haha Guess now is a good time to learn.

I will definitely print out a list just in case!