any point in celiac testing?

[angie]

Hello,

This is my first post, and I am not sure if this is the best place to post my question. I am wondering if there is any benefit in traditional Celiac testing? I have ordered the A1+C1 panel from Entero labs as recommended on this forum. Waiting for the kit to arrive.

I have a commitment to myself to really go completely gluten free if indicated on those results.

I was just recently diagnosed with Lymphocytic Colitis, but my symptoms began in October 2012. I didn't have health insurance at the time, and managed to get my symptoms relatively under control on a raw food smoothie diet. I stayed on that diet very strictly (which is obviously gluten-free) for over a year. I began having the smoothies during the day and eating what I wanted for dinner sometime during the second year. My stools have never been consistently formed since that time, but I felt better and was not running to the bathroom 20 times per day any more. I cannot recall the specifics of my diet in 2014 and early 2015. I would periodically have episodes triggered by high stress, certain foods, or illness. I had a prolonged episode of the colitis symptoms begin in September 2015 until spring or summer of 2016. The smoothie diet did not work this time. I asked my PCP what to eat, and she suggested white breads, white rice, and bananas for a short time. I became quite carb-addicted, and ate lots of grains until beginning a Keto-type diet this past fall. I had cut grains and sugar out until Christmas,when I fell off the diet.

I have not been gluten free since December of 2017. I do believe it causes me problems sometimes. I had never know that a small amount could cause problems for 6 months!

I had a colonoscopy when I turned 50 and it was considered recommended screening. That is how I got the diagnosis. My health has never been great the past decade or so...lots of fatigue and abdominal discomfort. I had really disconnected my awareness from HOW MUCH discomfort I experience, until getting the diagnosis. Now, with keeping a journal of symptoms and diet, I have been quiet miserable!

Is there any point to getting the blood test for celiac while I am still consuming some gluten? What would that diagnosis change? I am not a fan of medical tests and procedures, and so would prefer to avoid a biopsy if there is no other treatment with that diagnosis.

I apologize for the rambling post. It has been so good to find this forum where one can talk about things others do not want to hear, lol!

I appreciate any thoughts, and have a great day!

Angie

[tex]

Hi Angie,

Welcome to the group. Whether or not you get a medical diagnosis of celiac disease is kind of a moot point. It depends on whether you have one or more of the celiac genes (HLA-DQ2 or HLA-DQ8). If you do, you almost surely have celiac disease and if you don't, you can't officially have celiac disease. It's irrelevant though, because the clinical symptoms are the same and the treatment is the same. The only difference would be your Marsh score on a small intestinal biopsy.

FWIW, I'm pretty sure that I'm a celiac (I have an HLA-DQ2 gene), but I'll never know because I'm not about to go through a gluten challenge and an upper endoscopy just to get an official diagnosis that wouldn't change anything, anyway.

I hope that some of this is helpful.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Erica P-G]

Welcome Angie,

From one 50yr to another I can quite relate to everything you just said here....regarding the last 10 years I also learned I had LC in April of 2012...but didn't find this forum until 2015 which when upon that time I started my healing journey and have not looked back.

Not gonna lie, it has left me in a funk more often than not...but then food has been a hyped up luxury that I can't afford with LC. I have been strict with staying gluten free though, if nothing else I am probably healing better because of it.

I hope you find your safe foods and begin your healing journey too!
Cheers
Erica

[angie]

Thank you both for your replies! That is kind of how I was thinking about the Celiac tests also Tex.

[Gabes-Apg]

The article link in this post is a good explanation

https://perskyfarms.com/phpBB2/viewtopi ... ative+test