Guess I Am Back

[whtswrongwithme32]

Hey guys,

    I got really scared when I found out I had a tumor on my liver (same place they found my Mom's), so I left for a while thinking it was going to be bad, but IT WASN'T. I still have upper right pain, nausea, joint issues, and am losing weight with little to no answers as to why. The tumor was benign! yay! But the symptoms continue. The referral to a G.I. doctor is still "in process", how long does that take typically? It's been 2.5 weeks since I should have known something and I still do not know who I am seeing or when. I called my CNP's office on Monday and they said "it was in process". I decided to call today just to ask how long do I wait to call and recheck on everything. I had to leave a message. Is calling once a week too much? The jeans that were way to small for me two months ago are starting to fall off of me and  I can not wear the clothes I was wearing two months ago. I'm not big either so it concerns me. I had a blood test (ANA) and it came back normal, does this mean celiac is out of the question? ugh I'm tired of this mystery and would like to get back to my pre July 28th physical self! Oye. 

just fyi- my mom had all classic symptoms of celiac, passed away of a cancer that was lymphomic, my Grandpa IS def celiac. I'm about fed up and willing to try a glueten free diet if things don't start moving soon. I'm glad I get to live and that this is not "the worst thing that could happen", but I really miss how life was mid summer. okay, thanks this is all.

                                    me

[bartfull]

That is GREAT news! CONGRATULATIONS!!!

 

I don't know what to tell you about testing, but I think I mentioned before that IMO it is a good chance that you do have celiac. You need to have all of these tests:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA control test

 

AGA IgA and AGA IgG are older, less reliable tests

 

If I were you and you're not TOO uncomfortable, I would wait and get tested. That way you will be able to show other family members why THEY should be tested too.

 

If you feel you really can't wait the choice is yours. But if you go gluten-free now you won't be able to get tested later unless you do a gluten challenge, and from what folks here have said, that's a real bear.

[BlessedMommy]

  On 9/25/2014 at 11:09 PM, bartfull said:

If you feel you really can't wait the choice is yours. But if you go gluten-free now you won't be able to get tested later unless you do a gluten challenge, and from what folks here have said, that's a real bear.

 

 

Yep, a gluten challenge can be a real bear and there's no guarantee that you can get through one at all. (see my sig)

 

I would suggest that you pursue absolutely every testing option available, be it more bloodwork or endoscopy. With your symptoms paired with your family history, though, I'd say there's a good chance that it's celiac.

[ravenwoodglass]

While you are waiting for the appointment call the doctor's office and ask if you can go in and get the celiac bloodwork done. Tell the nurse since celiac runs in your family that you would like the doctor to have the results in hand at the appointment. Stress the amount of weight you are losing and your increase in symptoms.

Do not go gluten free until your tests are done.