I don't know where to put this post so I thought the Paleo area was most likely to have a bunch of celiacs to answer this.
I am getting a blood test for celiac next week but I have been on a gluten free (strict) diet for like 3 years. I read that you have to be eating gluten to get an accurate result. I bought a loaf of bread and have been eating 2-3 pieces everyday. I will only be able to eat it for a week before getting tested. Is that long enough to get a true result? I read somewhere you have to eat it for 6 weeks minimum but I don't understand why it would take so long for you to make antibodies. I'm already feeling negative effects of the wheat so probably either way the test turns out I will still not eat gluten. People would leave me alone about it though if I get diagnosed.

Gluten intolerance runs in my family, but nobody has ever tested positive for celiac.

Gluten makes my sister and my brother very ill, so if you did come back as neg for celiac, you know you can't eat it. Simply state NCGS or Non-Celiac Gluten Sensitivity.

"Gluten intolerance is a broad term which includes all kinds of sensitivity to Gluten. A small proportion of Gluten intolerant people will test positive to Celiac Disease test, and so are called Celiacs (~0.5% of the population).

But most Gluten sensitive people return negative or inconclusive results upon Celiac testing. The correct term for these people is Non-Celiac Gluten Sensitive (NCGS) and may be as many as ~15% of all people or 1 in 7.

The most accurate and effective way to identify NCGS is to do an Elimination Diet" (which it appears you have already done.)


"new evidence shows Non-Celiac Gluten intolerance is around 30 times more prevalent. Up to 15% of people or 1 in 7 are Gluten Sensitive and suffer the same symptoms. These are people who test negative or inconclusive for Celiac Disease. They are known as Non-Celiac Gluten Sensitive (NCGS).

Many people suffer from headaches, mouth ulcers, weight gain or weight loss, poor immunity to disease, and skin problems like dermatitis and eczema.

But the common and well-known Gluten intolerance symptoms are gastro-intestinal (diarrhoea, flatulence, bloating etc.).

Also associated are miscarriage and infertility and malabsorption problems like anaemia

many people turn to blood tests as a first investigation. Because the most common test for Gluten intolerance is still the old-fashioned Celiac test (blood tests and intestinal biopsy), most Gluten intolerant people return a 'negative' or inconclusive test.

That's not surprising because Celiac Disease is a very small part of Gluten intolerance."


personally I would not bother with the test, especially if it means having to eat gluten before hand. The only thing that might be of use would be if you can get a tax credit on gluten free foods with a celiac diagnoses.. but IMO commercial packaged gluten free foods are mostly crap anyway.

Just my opinion, but I think gluten is dangerous whether a person is celiac or not, and I would hate for anyone to get sicker because of a misdiagnoses.

I hope you do not take offense to my position/opinion though, I just want to make sure you are aware of the differences and similarities of the 2. Gluten damage has ruined my brother's life.. and he has been gluten free for almost a year. It only takes a bit to make him very ill again for a long time. He is only 36 years old. Lupus like symptoms, pain, skin conditions, thyroid disease, depression, anger management issues and autoimmune diseases. His body is literally attacking itself because of gluten antibodies. He would tell you that the test is not worth it, never in a million years... not if you already know gluten makes you feel badly.

I have gluten intolerance all through my family. My grandmother is diagnosed celiac. No one else has a diagnosis but my mom, my sister, and my brother all have other issues that are being clearly linked to gluten intolerance by the new research.

I did the blood test and came up negative. I let this lure me into thinking that a little gluten was probably ok even though I was mostly low carb. Wrong.

Now that I'm clean I can tell a huge difference.
So I just identify myself as gluten intolerant/celiac when explaining to people and don't explain about how I got that diagnosis.

I wasn't ever 'diagnosed' with my soy allergy after all. If I eat soy, I have excruciating gut pain and throw up. If I don't eat soy, I don't have a problem. I didn't really feel the need to get a formal diagnosis on that since I'd already figured it out by myself.

I'm treating gluten the same way at this point.

This was exactly my sister's experience. She thought 'ok, bread makes me feel bad, so I will just toss out this bun and eat the meat (or toppings off the pizza etc.)

It took her a year to discover that gluten was everywhere and she only merely had to breathe it in to suffer for days.

There is nothing worse than using a cutting board wiht a trace of gluten on it, and feeling the next day like you ate an entire loaf of bread. She would have eaten the bread had she known she had been unsuspectingly 'glutenated'.

Nope I certainly don't take offense, in fact I feel pretty much the same way. I guess it has been so long since I ingested any gluten that I was curious what would happen if I did and since my new dr suggested I get the blood test I took this as a chance to see what would happen. My mom and aunt are gluten intolerant but neither has been diagnosed celiac. I guess since I have never been diagnosed with anything I always wondered if I was just making all my symptoms up. I will get the test just to see what it says and because I have to get blood drawn for a few other things anyway but there is no way I am getting an intestinal biopsy or anything invasive like that. I am pretty sure though that whatever the test says I will still go back to being 100% gluten free.

One of the biggest frustrations my Brother had, was being accused by his Doc and his family as being a hypochondriac. He seriously thought he was going crazy and has asked for mental help and has been on drugs for depression.

Yet when he removes gluten, he feels significantly better and when he eats it, he relapses. So he just keeps plugging along, hoping he can heal whatever damage has been done.

There are 4 of us in my family.. he is the youngest and the sickest.. my sister is the next youngest and a little less sick. I am the second child and less sick, but had this weight problem, my oldest Brother also has weight issues, but none of the other issues that cascade down for the rest of us.

We can look back at our past and how our diets changed over the decades. It was my younger sister and brother who got the brunt of the low fat, high fiber, lots of health 'whole grains' and 2% milk as they were growing up. Their diets as kids had much more man made oils, packaged foods and sugary treats than mine did. I had whole milk, home made white bread, real butter and nothing was packaged. I just started gaining weight when all of that changed, but I had already passed puberty and they hadn't.

Hubby and I were both test by Entero Lab for gluten intolerance. This is the most accurate test. Much better than a blood test, and you don't have to be on or off any special diet to get accurate results.

https://www.enterolab.com/Home.htm

i'm betting those numbers are much higher. it would be interesting to have everyone try going off gluten for a while and see how many feel worse when they add it back. i don't think we know how many ways gluten affects people. it's one of those things i try to convince people just to try but most just won't.

hope your testing goes well and you don't feel too bad eating that bread. it's great that you know you can't have it no matter what the testing shows.

I'm actually feeling pretty terrible and I'm about to call it quits on this gluten experiment. Well it was kinda fun while it lasted and I did get to enjoy a corn dog and a beer last night of course afterwards I got wheezy,itchy, bloated and had bad intestinal cramps, not even worth it.

There's your sensitivity test right there!

I kept eating gluten until I got my blood test. It was negative, but my GI doc said I shouldn't have gluten anyway.

You won't get a positive blood test result from eating bread for a few days. Usually the villi in the intestines have to be about completely gone before you get a positive result and that can take years if not decades.

You can get an enterolab test which tests for antibodies in the feces and those will stay positive for a year or more after eating gluten.

I got a positive blood test for celiac last year, but then the docs wanted a biopsy. I turned that down and just went gluten-free immediately -- I had spent too many years fighting symptoms that repeatedly had my doc convinced that I had lupus. I wouldn't bother going back on gluten to get tested if you know that gluten makes you sick; it's not like there's any other treatment out there for celiac!

The Entero Lab DNA test for celiac was an eye-opener for me. Both my parents carried the celiac gene. Yet no one in my family besides me will agree to be tested.

I'm getting the test done on Saturday but I have since ended my gluten experiment. You guys are all right, I don;t even need the test to tell me I don't handle it well. I haven't eaten gluten in 3 days and I am still suffering the consequences!

if you're already eating GF, why get the test? AND if you are experiencing sx after a few days of eating bread, maybe that's all the testing you need.

my daughter had IBS that was so terrible that most days she could not leave the house. she was unable to work, needless to say.
she was tested....negative. put on medications w no improvement.
my mom gave her the book Breaking the Vicious Cycle, and her life changed dramatically w/in the first week. it was truly miraculous.
will she ever go back to eating gluten? not just no, but HE!! NO!
positive test or not, why would she want to torture herself?