i have celiac right?

[joe3530]

Had low serum iron/iron binding capacity normal ferritin and mildly elevated LFTs after a whole host of neurological/gastrointestinal issues and chronic fatigue that did not away after resting up months after getting sick on a business trip OCT 2018.

immunoglobulin A = 329 (ref range 70-400)

deamidated gliadin antibodies = 101 (ref range 0-30)

TISSUE TRANSGLUTAMINASE= >177 (ref range 0-20)

The NP GI who saw me did everything she could to get as much money as possible out of me (wanted to repeat Hep A/B/C testing despite me holding the results in my hands and tested me for all sorts of ridiculous liver issues thank god i rejected the biopsy, even after a totally normal liver ultrasound!) so I opted out of the endoscopy and wanted to work with my PCP who I trust much more

He advised to try eliminating gluten for proof of diagnosis as we both doubt I have had this for longer than the past 6 months. With results these strongly positive (and highly celiac specific with the gliadin) it would be wise to ignore the biopsy even if negative, correct? The way I saw it was I could suffer severely and eat gluten for another 3 months while I wait for a biopsy, pay another $2000 in follow ups and more tests and if its negative, I can't even prove its not celiac because maybe the damage hasnt occured, the biopsy wasnt read right, or enough samples werent taken!

Initial elimination of gluten went well started lightening up and feeling better, 2-4 weeks later symptoms started returning. 7 weeks in and still getting vague GI symptoms + fatigue (is this due to healing occuring? my CC controls aren't perfect yet i'll admit). I definitely have this with results like this right?

[cyclinglady]

I think you are doing the right thing.  Give it another month or even wait a full six months (since your symptoms improved and then came back) before checking your antibodies again.  Why?  The gluten-free diet has a steep learning curve.  Unless you were diagnosed at a major celiac center, chances are you got the “you have celiac disease.  Go gluten free and good luck!” speech like so many of us.  That means it is up to you and your family (maybe) to learn a complicated diet and more importantly, learn to deal with cross contamination.  It takes time.  Mistakes will be made.  It happens.  It WILL happen.   Your antibodies are high.  Every exposure at this point could increase them or keep them elevated.  For me, a hit, can mean months of feeling ill.  For hubby it is about a week.  Every person is different.

With two strongly positive test results, Your GP is right in my non-medical opinion.   Now, I am biopsied confirmed, but I luckily had excellent insurance.  I also wanted a biopsy because my hubby had been gluten free for 12 years and I knew exactly what a celiac disease diagnosis meant.  You are right in that even if your biopsy was negative (easy to miss damaged areas), you should still trial the diet.   What counts is feeling good.  If you should find that you are still not feeling better after months of being gluten free (even doing the Fasano diet which is basically no processed foods or eating out) you should reconsider the endoscopy.  Celiacs can have more than one autoimmune disorder and other issues like Small Intestinal  Bacterial Overgrowth (SIBO) should be ruled out. Also keep a journal because I thought I was getting glutened but turns out Xanthan Gum which is used in Commercial gluten-free breads/flours was the culprit (my hubby is my canary).   Look for other intolerances which may resolve once your gut heals.  Leaky gut is real per this celiac expert:

https://m.youtube.com/watch?v=wha30RSxE6w

I would save money and wait six months to master the diet and heal (though if really sick it could take a year or longer) before doing a repeat antibodies panel.   The point is to see if antibodies are declining.  Actually you might be able to check just the two tests you were positve on and save money.  Depends on the lab though.  

Even if you had liver issues and if it is due to celiac disease (which is systemic), it can resolve on the gluten-free diet.  

[Fenrir]

You have the labs that are pretty specific to celiac disease so I believe you are as sure to have celiac disease as one can be without having the EGD done. I would get the EGD done if money isn't an issue but you could certainly just go gluten-free and if you improve then you are good to go. 

I had the EGD done because I maxed out my deductible and max out of pocket already. celiac disease resulted in me getting an MRI, CT scan, numerous labs, having my gallbladder out. I ended up having two EGDs, first one they just thought I had an ulcer so didn't take the biopsies needed.