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I Have No Idea Where To Start.

cbs011

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cbs011 Newbie
cbs011
Posted

i'm just going to get straight to the point-

i really need some help finding out how i can get tested for celiac disease. my dad told me that my aunt has a problem with gluten, but she was never formally diagnosed and i figured i could turn to people who know more about this disease. I i have many of the common symptoms. i've had them for as long and i can remember and im so tired of it. i just found out that i have a problem with my knees and the anti-inflammatory pills my doctor gave me just arent helping the pain. i also have pain in other joints but this doctor only specializes in lower extremties. i wanted to see if the pain was gluten related before going along with a surgery.

my mom is really busy right now so i can't ask her for help, so i would REALLY appreciate it if someone could give me some advice about where to start.

-- Cara :)

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mamaw Community Regular
mamaw
Posted

You could start with a endo with at least three biopsies. The celiac bloodwork...Stay on wheat & gluten or the testing will not be accurate.... You could be just gluten sensitive& not have celiac disease where a person has damge to their villi... That's a good thing ......in the end either way the only help for either illness is a full gluten-free diet for life.

hth

cbs011 Newbie
cbs011
Posted
  • Author

should i just see my regular physician for this?

Marlie Apprentice
Marlie
Posted

i'm just going to get straight to the point-

i really need some help finding out how i can get tested for celiac disease. my dad told me that my aunt has a problem with gluten, but she was never formally diagnosed and i figured i could turn to people who know more about this disease. I i have many of the common symptoms. i've had them for as long and i can remember and im so tired of it. i just found out that i have a problem with my knees and the anti-inflammatory pills my doctor gave me just arent helping the pain. i also have pain in other joints but this doctor only specializes in lower extremties. i wanted to see if the pain was gluten related before going along with a surgery.

my mom is really busy right now so i can't ask her for help, so i would REALLY appreciate it if someone could give me some advice about where to start.

-- Cara :)

You need to get a Celiac Panel Test:

Total IGA

Tgg

EMA

DGP IgA

DGP IgG

There is one other test that is older than the DGP test but I'm not sure of the name but it is very similiar in name. Be aware that you may test positive on only one of the tests. Total IgA is to see if you are IgA deficient. My daughter tested positive only on the DGP tests. Less is written about these two tests as they are much newer. The name of the test is Deamidated Gliadin Peptide. Also, be aware you can be negative on these tests and still have a positive biopsy. False positives seem to be quite rare from what I've read but false negatives are quite common. Even if you are not celiac that does not preclude gluten intolerant. Gluten intolerant individuals seem to have many of the same symptoms as those who are Celiac. You do not want to go on a Gluten Free Diet prior to testing because it effects the results.

Hope this helps. Best wishes.

plumbago Experienced
plumbago
Posted

See your physician, and on this forum read read read, and take people's advice, and get the most complete panel recommended. INSIST ON IT with your physician, as he/she may try to downplay it, if unfamiliar or unexposed to Celiac. Insist on it.

Do research, read, and then write it down and take it into your physician and insist on that specific test being done.

Then, if it comes back high in antibodies, or if it looks like you have Celiac, a common next step is the intestinal biopsy.

But first things first, insist on as comprehensive a test as possible. And read here about what that is.

Oh, and as someone else said, DO continue eating gluten. Otherwise, you won't get an accurate reading.

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