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desperateforhealth

Going To The Doctor Tomorrow-What Test(S) Should I Have Done?

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About a month and a half ago I decided I was fed up with my stomach problems and did enough research to suspect gluten intolerance/celiac's, so I decided to go gluten free. My stomach is happier (although it might just be because I eat healthier now), but I've decided I'd like to get tested so that I can know for sure. I'm worried about people thinking my self-diagnosing isn't legit. Especially if I am still having problems, even if it's fewer than before.

So my question is... what test(s) should I request from my doctor so that I can know if I have gluten problems? Obviously I am particularly interested in ones that don't require you to have gluten IN your system, but I am also worried about price. Any advice and information is very much appreciated.

Thank you so much for your help.

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Unfortunately both blood tests and endoscopy/biopsy require you to have gluten in your system.

If you are looking for a Celiac Disease diagnosis, you will have to go back on gluten (some say a substantial amount of gluten for a period of at least three weeks...my Celiac Doc told me a month).

Since you are gluten-free, perhaps you should stay that way for a few months then decide if it is worth the set-back for a diagnosis. Also at by then you may be ready for a gluten challenge to confirm for yourself that gluten is a problem for you.


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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hard to say. You may find gluten bothers you after only a short time gluten-free.

The reason I suggest some time without gluten is to see if you have even more improvement to your health since you are already gluten-free.

There are no concrete formulas for celiac diagnosis - many have negative celiac panels and positive endos or vice versa.

The standard path is celiac panel/bloodwork followed by endoscopy with several samples taken of from different locations. Since you are already gluten-free - you'll have decide when you want to proceed with attempting to get an official dx which will require gluten in your diet for weeks prior to testing.


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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To confirm diagnosis - for many giving up gluten for life is not something they will do without an official dx. The endoscpy can also be helpful in determining the level of damage. Personally my damage was quite severe so I have had follow up endos.

Again you will find of full spectrum of paths that have led folks to the gluten-free life - some with official celiac or gluten intolerance dx / some without. Some have improved health without testing and don't feel they need a dx to stay gluten-free.


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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