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Mica

Gi Wants Me To Eat Gluten For 2.5 Weeks Before Appointment!

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OK....so I accepted the Enterolab results that show that my body is producing antibodies to gliadin and that I also have one the main genes that predisposes you to Celiac Disease. I cleaned out my cupboards and jumped into my new eating lifestyle head-on. I survived 3 days with relative ease...except I had stomach pain last night and attribute that to the bacon-wrapped scallops appetizer OR the bananas foster I shared with my hubby (even though I did not eat any of the tortillas that came along with it). Now I get a phone call from a GI whom my primary referred me to stating that I am to go back to eating gluten until he sees me for the first time in 2.5 weeks. I DO NOT WANT TO DO THAT!

I am considering canceling my appointment altogether and just continuing with a gluten-free diet for life based on the Enterolab findings. I plan on getting my 2 boys tested in a few months through Enterolab anyway...so why go to the GI. What are your thoughts?

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Celiac.com Sponsor (A8):

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do you have a burning desire for a concrete diagnosis from a doctor? or are you ok with your self-diagnosis? because it sounds like you already have your answer.


5/23/2008 - blood positive for antibodies

6/24/2008 - negative biopsy

8/11/2008 - DQ2 gene present

7/1/2008 - gluten-free

(and dairy-light until 12/1/2008)

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OK....so I accepted the Enterolab results that show that my body is producing antibodies to gliadin and that I also have one the main genes that predisposes you to Celiac Disease. I cleaned out my cupboards and jumped into my new eating lifestyle head-on. I survived 3 days with relative ease...except I had stomach pain last night and attribute that to the bacon-wrapped scallops appetizer OR the bananas foster I shared with my hubby (even though I did not eat any of the tortillas that came along with it). Now I get a phone call from a GI whom my primary referred me to stating that I am to go back to eating gluten until he sees me for the first time in 2.5 weeks. I DO NOT WANT TO DO THAT!

I am considering canceling my appointment altogether and just continuing with a gluten-free diet for life based on the Enterolab findings. I plan on getting my 2 boys tested in a few months through Enterolab anyway...so why go to the GI. What are your thoughts?

Mica,

I let a GI doc talk me into going back on gluten for testing after three months gluten-free and it was awful. I lasted four days and thought that they were going to have to hospitalize me. It was one of my worst episodes ever. Don't do it. Tell them that if they can see you right away you will come in, if not, cancel the appointment.

You won't have the "gold standard" diagnosis, but who cares, you've got some pretty convincing test results and a positive dietary response.

Kate


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Celiac symptoms since 1985 (gluten-free since 9/2/07)

Vitiligo since 1991

Environmental allergies since 1992

Polycystic Ovary Disease since 1993

HLA DQA 1*05 (DQ5)

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There's no way I would eat gluten again to have tests done. I ate cookies containing gluten for 2 days before having blood tests for celiac....and the tests were negative. I ended up in the emergency room about a week later in severe pain, and all tests were negative. Enterolab tests were positive and other food problems were discovered. I'd cancel the appointment and see how you do over the next few weeks.

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I thought the gluten challenge lasted 3 months, and involved eating the equivalent of 4 slices of bread per day. I tried going back on gluten for just one week when I first started the diet so I could take some tests, and I was a mess. I slept 16 hours per day that week. Most of my tests were negative because I didn't do the challenge correctly.

I recently had to come home early from vacation after two weeks of constant little amounts in sauces. I'm a lot more sensitive now. I was a MESS for two weeks after that. (Normally it takes me a week after a glutening.) There's no way I could do a real gluten challenge. Are you sure you want to do that to yourself? I just accepted that I have a number of negative tests.


Gluten free since Feb 2006, Dairy and Soy free since 2009

Anemic off and on since 2003

Negative tTG Ab, IgA, Gliadin Ab IgA, wheat allergy (IgE) blood tests (Feb 2006)

Positive wheat allergy skin test(Apr 2006)and dietary response (Feb 2006)

Celiac grandmother (Dx in 1940s, "grew out of it")

Training for my first triathlon to support the Crohn's and Colitis Foundation of America.

~Amy

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OK....so I accepted the Enterolab results that show that my body is producing antibodies to gliadin and that I also have one the main genes that predisposes you to Celiac Disease. I cleaned out my cupboards and jumped into my new eating lifestyle head-on. I survived 3 days with relative ease...except I had stomach pain last night and attribute that to the bacon-wrapped scallops appetizer OR the bananas foster I shared with my hubby (even though I did not eat any of the tortillas that came along with it). Now I get a phone call from a GI whom my primary referred me to stating that I am to go back to eating gluten until he sees me for the first time in 2.5 weeks. I DO NOT WANT TO DO THAT!

I am considering canceling my appointment altogether and just continuing with a gluten-free diet for life based on the Enterolab findings. I plan on getting my 2 boys tested in a few months through Enterolab anyway...so why go to the GI. What are your thoughts?

My gi told my mom she had to do it for me when I was 1 and she did as much as she didn't want to. It's your personal decision=/

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