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Where Do I Go To Get Diagnosed - I Think I Have All The Symptoms?

jgaida01

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jgaida01 Newbie
jgaida01
Posted

Hello.  Thank gosh there is a place to go where I can ask questions and figure out what in the world is going on with my insides.  I have recently been on a quest to figure out what's going on with me and made an appointment with a top Doc at Penn University in Philadelphia but of course I can't get in until April 4th.  Until yesterday, Gluten Free wasn't even in my vocabulary but it keeps coming up when I talk with friends and google.

 

My symptoms are as follows:

 

Gas - all the time and uncontrollable - I can't stop it and it is not pleasant 

Diarrhea or very soft stools

a rash that comes and goes on my legs that is extremely itchy - I feel like I would rather cut my leg off

Bloating

Weird colored (very light) stool

Depression is starting to set in because I feel like I just can't do anything

I'm sure I've had other symptoms like the crampy stomach but not enough for me to list it here as an actual symptom

 

Up until recent it was a funny topic  - I couldn't figure out why I was so gassy but now it's impeding on my life and the things I do - I don't even want to leave the house because when I do I find myself in an embarrassing predicament - I went to get a massage the other day and had to make her stop because the gas was coming and I didn't want to be embarrassed.  Friends are constantly asking me if I passed gas - it's horrible.  I can't drive on business meetings unless I'm by myself because of the fear of what might happen.  It's just horrible.

 

I'm going to try this gluten free diet for two weeks to see if it makes the difference I am hoping for but my questions is....where do I go to get formally diagnosed with this allergy? 

 

Any help or suggestions would be appreciated.

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cahill Collaborator
cahill
Posted

Welcome :)

 

First of all do NOT stop eating gluten until you are tested .

Ask your reg doc to run a celiac panel .

Celiac's is not an allergy.

 

Check out this link it may answer some of your questions :)

https://www.celiac.com/gluten-free/forum-12/announcement-3-frequently-asked-questions-about-celiac-disease/

 

And please feel free to continue to ask questions ,, we all had a million of them in the beginning  ;)

jgaida01 Newbie
jgaida01
Posted
  • Author

Welcome :)

 

First of all do NOT stop eating gluten until you are tested .

Ask your reg doc to run a celiac panel .

Celiac's is not an allergy.

Thank you a1956chill!

anand Newbie
anand
Posted

You can get tested at a direct to consumer lab also... Not sure about reimbursement by insurance company..

Such as

Open Original Shared Link

U can do a celiac antibody screen or compile panel.. And also gene testing for celiac... This is the test doctors will typically order..

Or u can get tested at entero lab also...

Open Original Shared Link

kareng Grand Master
kareng
Posted

You can get tested at a direct to consumer lab also... Not sure about reimbursement by insurance company..

Such as

Open Original Shared Link

U can do a celiac antibody screen or compile panel.. And also gene testing for celiac... This is the test doctors will typically order..

Or u can get tested at entero lab also...

Open Original Shared Link

 

 

In the US, in some states, you can't get blood work done without a doctor's order (unless that has changed?).  Insurance probably won't pay for Enterolabs.  I don't believe Enterolabs does the Celiac blood panel.

kareng Grand Master
kareng
Posted

Just out of curiosity, I called the Request a test place.  They said that there are only 4 states that you can't do them without a doctor's order.  They do not take insurance.  You must pay before the test is run.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

welcome!

 

you can ask your general practitioner/family doctor to run the following blood tests:  

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

Open Original Shared Link

 

Is your appointment at UPenn with a GI doctor? I'm not too far from Philly in Delaware, and Jefferson and Paoli hospitals both have celiac centers. Also check out Open Original Shared Link

 

Make sure you continue to eat gluten until all testing is complete.  good luck!!

 

Hello.  Thank gosh there is a place to go where I can ask questions and figure out what in the world is going on with my insides.  I have recently been on a quest to figure out what's going on with me and made an appointment with a top Doc at Penn University in Philadelphia but of course I can't get in until April 4th.  Until yesterday, Gluten Free wasn't even in my vocabulary but it keeps coming up when I talk with friends and google.

 

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  • 2 weeks later...
Montezuma Newbie
Montezuma
Posted

Can I ask why you need to eat gluten until I am tested?? It makes me so sick every time I do!:(

kareng Grand Master
kareng
Posted

Can I ask why you need to eat gluten until I am tested?? It makes me so sick every time I do! :(

 

 

When a Celiac eats gluten, the body makes antibodies.  These antibodies attack the intestines and sometimes, skin (DH).  If you aren't eating gluten, you may not have enough antibodies running around to show up in the blood tests.  If you are getting an endoscopy, you don't want to heal before your test and have the doc say you don't have Celiac when you do.

cahill Collaborator
cahill
Posted

 celiac disease tests look for the damage caused to your body when you eat gluten containing foods  If you stop eating these foods, the damage can start to heal pretty quickly—and you may test negative even when you actually have the condition.

To get a celiac disease diagnosis, your doctor usually first orders blood tests that look for antibodies that your body produces when you eat gluten. These antibodies reflect the damage done to your small intestine by your own immune system, in response to gluten ingestion. If there's no gluten in your diet, your immune system won't produce these antibodies, so none will show up in your blood.

If you test positive on these blood tests, the next step is an endoscopy . (If you test negative but have overwhelming  symptoms  or other reasons to think you have celiac disease, such as a family history of the condition—despite those negative blood test results—you might also proceed to the endoscopy.)

An endoscopy is a procedure in which a gastroenterologist winds an instrument down your throat and actually collects tissue samples from your small intestine. Those samples are then examined for signs of villi atrophy or intestinal damage caused by your immune system's response to gluten ingestion. Again, if you're not ingesting gluten, there may not be as much damage to find, and samples might test negative for celiac disease—even though you actually have the condition.

nvsmom Community Regular
nvsmom
Posted

Could you get in to see a dermatologist to see if your rash is indeed dermatitis herpetiformis (dh) since you have an active rash already. The doctor would need to biopsy the area beside the rash and request specific celiac tests are run on the samples.  A small number of celiacs are diagnosed this way so it may be worth looking into.

 

Your family doctor can run the celiac tests that were mentioned previously since a month and a half is a long time to wait.

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