Borderline Testing

[twinboys]

Hi I'm new to this forum, but I wanted to ask a question. I got the celiac blood test done and also the colonoscopy done. My results said that I was borderline (the number was 21). Do I consider myself a person with celiac disease or just gluten intolerant? I just started to do the gluten free diet. I have been feeling ill for a few years after the test and decided to see if the diet would help. I am noticing a difference but just wanted to ask anyways. thank for any info.

[ChristineSelhi]

Hi there,

I am officially gluten intolerant, but have been struggling with diagnosis myself, since I didn't find a doctor to do the testing until after I had stopped eating gluten. I DID have the DNA test, and it said I did not have the "right" genes to be a celiac. That was 5 years ago. Now I do not eat gluten at all, and I have been told by my doctor that for my safety I should identify as having celiac disease.

I say give the diet some time. It takes at least a year to figure out what has gluten and what does not and what specific foods have a higher instance of cross-contamination. I still have breakouts and sick days from unknown gluten intake and I have been gluten free diligently for over 2 years. If you feel better on a gluten free diet, then eventually as you rid your system of gluten, small amounts will not feel good. For this reason, I think it is okay to identify yourself as a celiac. There is so much that doctors don't know about celiac disease, and because of that I have stopped taking chances. I don't believe we really know the long-term effects. I know that I am sick for days, if not weeks, when I ingest small amounts of it. And that is enough for me to say I have celiac disease, especially if it makes the person who is serving me food take me more seriously.

Since you have been given a "borderline" diagnosis, I say use whichever term you want, but in my experience, especially when it comes to carterers and restaurants, "celiac disease" is taken a lot more seriously. It should not be this way, but it is.

Or, you can use the term one of my other gluten intolerant friends and just tell them you are a glutard.

Though some find that one really offensive!

[twinboys]

Thanks so much for your info, there is alot to learn and it has only been 3 weeks, my doc said that i probably have irritable bowel syndrome and come back in a year. After a year i started getting worse like vomiting after every meal. Never went back to get tested again. I am going to stick with the diet thanks for the support.

Hi there,

I am officially gluten intolerant, but have been struggling with diagnosis myself, since I didn't find a doctor to do the testing until after I had stopped eating gluten. I DID have the DNA test, and it said I did not have the "right" genes to be a celiac. That was 5 years ago. Now I do not eat gluten at all, and I have been told by my doctor that for my safety I should identify as having celiac disease.

I say give the diet some time. It takes at least a year to figure out what has gluten and what does not and what specific foods have a higher instance of cross-contamination. I still have breakouts and sick days from unknown gluten intake and I have been gluten free diligently for over 2 years. If you feel better on a gluten free diet, then eventually as you rid your system of gluten, small amounts will not feel good. For this reason, I think it is okay to identify yourself as a celiac. There is so much that doctors don't know about celiac disease, and because of that I have stopped taking chances. I don't believe we really know the long-term effects. I know that I am sick for days, if not weeks, when I ingest small amounts of it. And that is enough for me to say I have celiac disease, especially if it makes the person who is serving me food take me more seriously.

Since you have been given a "borderline" diagnosis, I say use whichever term you want, but in my experience, especially when it comes to carterers and restaurants, "celiac disease" is taken a lot more seriously. It should not be this way, but it is.

Or, you can use the term one of my other gluten intolerant friends and just tell them you are a glutard.

Though some find that one really offensive!

[mushroom]

Funny thing about doctors and tests - if the range is 1-20 normal, and you score 20, you do not have it, but when you score 21, do you have it? NO!! you are borderline. Borderline should be 20, i.e. 'normal' but barely. 21 is positive!

I personally have never believed in borderline - as others here have said time and again, you can't be borderline pregnant! You either are or you aren't.

You obviously have figured out that you are not borderline and you do not have IBS. If I were you I could call myself celiac and get on with it. And never consume gluten again to the best of your ability. And don't forget about all the hidden gluten in scrips, OTC meds, personal care products like toothpaste and shampoo, all your gluten contaminated cookware that you can't rid of gluten (wooden and plastic things, plus toaster and colander), don't share containers of spreads or preserves that have had gluteny knives dipped in them, and on and on......

Good luck on your journey to feeling better.

[twinboys]

Thanks so much for your input. it is nice to have some confirmation. I am definitely going to keep on doing the gluten free diet.

Funny thing about doctors and tests - if the range is 1-20 normal, and you score 20, you do not have it, but when you score 21, do you have it? NO!! you are borderline. Borderline should be 20, i.e. 'normal' but barely. 21 is positive!

I personally have never believed in borderline - as others here have said time and again, you can't be borderline pregnant! You either are or you aren't.

You obviously have figured out that you are not borderline and you do not have IBS. If I were you I could call myself celiac and get on with it. And never consume gluten again to the best of your ability. And don't forget about all the hidden gluten in scrips, OTC meds, personal care products like toothpaste and shampoo, all your gluten contaminated cookware that you can't rid of gluten (wooden and plastic things, plus toaster and colander), don't share containers of spreads or preserves that have had gluteny knives dipped in them, and on and on......

Good luck on your journey to feeling better.

[bellac]

Thanks so much for your input. it is nice to have some confirmation. I am definitely going to keep on doing the gluten free diet.

What number are you talking about that is 21? My doctor mentioned a number that normal is 4, is that the same one or something different? Can anyone help?

[mushroom]

Ranges differ from different labs and for different tests. It doesn't mean anything except when compared to the range they are using.