At What Point Did You Start Saying You Had Celiac?

[nvsmom]

I'm new to the board as well as new to the celiac world... sort of. It seems as though celiac sufferers have a hard time getting a definitive diagnosis and I'm in that category now. I took an at home test (Biocard), which tests tTg IgA I believe, and got a (weak) positive result which means positive and that I most likely have celiac because it tests for villious atrophy (I think). I went to my doctor and got paper work for a celiac screen (he didn't know which tests that included) and told me I probably have celiac disease. He then said that once the tests come back, I could decide if I wanted to do the endoscopy or just go ahead with a gluten free lifestyle... which I'm happy about since the idea of minor surgery just so I can label myself seems a bit silly.

BUT, by skipping the endoscopy, I won't get that "definitive diagnosis" so now I feel odd calling myself a celiac without it. I know that's a bit goofy since if I do have it, I've had it since childhood since stomache cramps, bloating, gas and the various aches and pains are nothing new...

At what point did you start labelling yourself as celiac? How intensely do most get tested before describing yourself as celiac? And most importantly, at what point did you start testing your children for it?

Thanks for any comments or advice.

Nicole

mom of 3 young boys

[BabsV]

I said it after 2 sets of positive bloodwork and the biopsy. I needed a definitive diagnosis due to my husband's employment (he works for the USG and we need medical clearance). Also, I am a really anal retentive type and not getting the biopsy would have always nagged at me. Besides, I'd been scoped previously due to chest pains (turned out to be severe GERD due to hernia...that's a whole 'nother story...!) so that part didn't worry me.

If you don't need a diagnosis for insurance or employment purposes and you don't want to get scoped and eating gluten-free works for you then go with it. Do you have to explain to any one why you choose to do so? Is your family going to give you a hard time without a 'real' diagnosis? You don't need to offer up details to anyone if you don't choose to do so.

[ravenwoodglass]

After my gluten challenge which caused such a severe reaction, including a GI bleed, that I couldn't make it to the biopsy procedure. Despite my negative blood work and not being able to do the biopsy my doctor then said, "you are celiac" and apologized profusely for demanding the challenge and only doing a colonoscopy when I first went to him and was still on gluten.

[Skylark]

I was never tested. I have other autoimmunity, I used to have a DH-like rash on my hand, and I have had lifelong problems with wheat. I call myself celiac without being 100% sure because it's easier to get people to understand how profoundly gluten affects my health and well-being.

[beachbirdie]

I haven't quite started saying it yet. I have only had one positive blood test, and it's not the most specific one. No endoscopy. I did have a rash that looked like DH but no biopsy.

So, my doc was willing to call it celiac based on circumstantial evidence (gene, Hashimoto's, mild symptoms), but since it's not proven beyond a reasonable doubt, I am gluten-free but I don't have the confidence to call it celiac.

I'm waiting for one more blood test which will be at the end of the year. If my Ttg IgG drops then I guess I'll accept I have it.