Chances Of False Positives? Newly Diagnosed.

[LRM91]

I've always had stomach issues and they have never been diagnosed. Doctors always thought it was something like colitis, even weather changes and so on or foods I eat (too much junk food?) but they could never find anything. I went to my doctor for a regular checkup and she did blood work on me and told me that I have celiac. I wasn't even sure what it was at the time. A lot of it makes sense to me on my sickness and maybe I'm in denial or can't think straight but I don't remember all gluten items making me feel sick? Unless I was naturally used to stomach cramping and it didn't hit me? But some foods like cereal made me feel hospital sick, but this gluten free cereal I'm eating is fine. But wouldn't all gluten make you feel sick with this disease? I'm really new to this. She said something I should be at a 3 and I'm going past 11 (something with my blood I think) and it's really really bad and I have vitamin deficiencies and says it caused me to be anemic. Does anyone know what those numbers mean? And if false positives are common? :/

[notme]

no, sweetie, false positives are not common (false negatives, however, are maddeningly common) welcome to the best club you never wanted to join.  take a deep breath and read the newbie 101 thread in the 'coping with' section.  the good news is:  you are on the road to feeling better.  we have all been where you are now:  don't know what to eat, how could you have this and not know, etc...  but you will be ok.  welcome to the board.  good luck.  we are here to help if you need it

[beth01]

Not all gluten related items made me sick all the time. Before diagnosis I ate gluten all the time and wasn't sick all the time, a lot of it, but not like when I eat gluten now. I only had really bad stomach issues a few times a year, pain related that is. Other wise all it was was constipation for me. You will be in denial for a while, you're giving up something that you had no clue was making you sick. It's a grieving process.

We can better explain your labs if you have the testing and results in front of you and can post them. I was a lab tech for 16 years but I don't know what labs you had drawn to explain what the results mean.

Like Arlene said, read the newbie section. It gets easier and there are plenty of helpful people on here

[LRM91]

Thanks (: I never got a copy of my papers for results I'll ask her again when I see her in a month. I was in shock so didn't really know what to say. But she said I'm highly intolerant and need to stop eating gluten asap. I'm glad there is a forum for it though. I was also told to go on the paleo diet the best I can. Ahh so many changes >_<

[beth01]

I'm not sure really what they told you about Celiac, but you can't eat gluten at all, have to stick to a 100% gluten free diet. It isn't so much of intolerance as it cause an autoimmune reaction in your small intestines, gluten destroys the villi. A breadcrumb is enough to cause the autoimmune reaction. Sure it's an intolerance, it makes you sick, but it's so much more. I don't know much about paleo, but I would try and eat as clean/whole as possible ( the less processed foods, the better), cut out dairy initially ( most celiacs are lactose intolerant due to the enzyme to digest lactose is excreted from the villi that we don't have due to damaged intestines)and keep a food and symptom diary. Learn all you can. It seems so over whelming at first, but it get's easier.

[SMRI]

False positives and negatives are rare, contrary to other's assumptions 1-3% of the time:

 

Open Original Shared Link

 

The false readings often come in when you have low IgA or IgG levels or haven't eaten gluten while testing from what the U of Chicago website says.

[nvsmom]

Welcome to the board.    I hope you start feeling better fairly soon.

 

 

False positives and negatives are rare, contrary to other's assumptions 1-3% of the time:

 

Open Original Shared Link

 

The false readings often come in when you have low IgA or IgG levels or haven't eaten gluten while testing from what the U of Chicago website says.

Based on what I have read and learned, false positives are rare (usually 5% or less of all positive results) but false negatives are not and can occur in 5 to 60% of test results depending on the test (most being below 25%).

World Gastroenerology report on celiac disease (see pages 10-12):  Open Original Shared Link

Journal of Family Practice: Open Original Shared Link This study's stats are based only on those who are not IgA deficient.

[beth01]

Welcome to the board.    I hope you start feeling better fairly soon.

 

 

Based on what I have read and learned, false positives are rare (usually 5% or less of all positive results) but false negatives are not and can occur in 5 to 60% of test results depending on the test (most being below 25%).

World Gastroenerology report on celiac disease (see pages 10-12):  Open Original Shared Link

Journal of Family Practice: Open Original Shared Link This study's stats are based only on those who are not IgA deficient.

Not only that Nicole, but people also don't produce the antibodies at the same rate or the same time of their illness. I often wonder since I was sick for 37 years and my tTg was only 37, would I have tested positive a few years ago? We will never know, unless they follow gene positive people from birth until diagnosis ( should they become celiac). I think it would be easier to find out how many licks it takes to get to the center of a tootsie roll tootsie pop.

[SMRI]

Welcome to the board.    I hope you start feeling better fairly soon.

 

 

Based on what I have read and learned, false positives are rare (usually 5% or less of all positive results) but false negatives are not and can occur in 5 to 60% of test results depending on the test (most being below 25%).

World Gastroenerology report on celiac disease (see pages 10-12):  Open Original Shared Link

Journal of Family Practice: Open Original Shared Link This study's stats are based only on those who are not IgA deficient.

 

I took my info from the U of Chicago Celiac Center..

[nvsmom]

Not only that Nicole, but people also don't produce the antibodies at the same rate or the same time of their illness. I often wonder since I was sick for 37 years and my tTg was only 37, would I have tested positive a few years ago? We will never know, unless they follow gene positive people from birth until diagnosis ( should they become celiac). I think it would be easier to find out how many licks it takes to get to the center of a tootsie roll tootsie pop.

 

LOL  No one can just lick those things.  

 

The changing lab number phenomenon seems to be true of celiac disease, and true of other diseases too.  My thyroid tests were boarder line high for many years before finally going high enough for doctors to be concerned, even though I felt no worse when it was quite high compared to barely elevated.  

 

 

I took my info from the U of Chicago Celiac Center..

 

Yeah, I know which makes the discrepancy confusing... I wonder where they got their numbers from because the medical journals and texts on celiac disease don't back up those low numbers. Especially their assertion that false negatives (1-2%) are more rare than false positives (1-3%) - that is the only place I have ever seen that stated.  I wonder if it was a typo or something...

 

Most studies on those tests will dispute those stats.  False positives are rare, but false negatives happen more than we'd like.  

 

I like to compare celiac disease tests to a pregnancy test. It is possible to get a false negative (when you test too early - like with early celiac disease) but it is very rare to get a false positive. A positive is generally a positive for celiac disease.

[beth01]

LOL  No one can just lick those things.  

 

The changing lab number phenomenon seems to be true of celiac disease, and true of other diseases too.  My thyroid tests were boarder line high for many years before finally going high enough for doctors to be concerned, even though I felt no worse when it was quite high compared to barely elevated.  

 

 

 

Yeah, I know which makes the discrepancy confusing... I wonder where they got their numbers from because the medical journals and texts on celiac disease don't back up those low numbers. Especially their assertion that false negatives (1-2%) are more rare than false positives (1-3%) - that is the only place I have ever seen that stated.  I wonder if it was a typo or something...

 

Most studies on those tests will dispute those stats.  False positives are rare, but false negatives happen more than we'd like.  

 

I like to compare celiac disease tests to a pregnancy test. It is possible to get a false negative (when you test too early - like with early celiac disease) but it is very rare to get a false positive. A positive is generally a positive for celiac disease.

I love brain fog lol. I was like " what she talking about licking for"?

[nvsmom]

LOL

[mommy-6]

 I was also told to go on the paleo diet the best I can. Ahh so many changes >_<

 

I was working towards converting to paleo for the last year... slow process because there's a lot of foods I wasn't willing to give up yet... like dairy and nachos  . Anyway, the kids started school and everyone was being so rude with my paleo choice, I started consuming grains again... including wheat, many pizza nights since my kids are in sports. Ended up with enough GI issues that I went to the ER one night because I couldn't sleep anyway. A month later, diagnosed with Celiac. Once my endoscopy is complete, I am going autoimmune paleo to help heal my gut. Though, I'm not sure I will remain paleo forever because of, well... dairy and nachos, lol

[LRM91]

I didn't even know there was an autoimmune paleo diet, I just looked it up it sounds super interesting. Nachos and diary are the best! I haven't had any milk (besides when cooking and I had an upset stomach) so I've been using almond milk but I'm not sure if cheese is something I can give up. I literally feel like I live for cheese haha. I've found some good sites for recipes for paleo that don't make it seem TOO bad which is most likely better than all the processed gluten free stuff I've been eating. I'm usually super busy so never have time to meal prep. But I'm sure you can find a paleo version of nachos I found one for Alfredo and it sounds super weird and interesting it's worth a try. It seems like you can make a paleo dish with anything.

In my situation I've had issues for 3 1/2 years but nobody could ever find anything. I've recently started getting blood when I go to the bathroom. I felt like none of my doctors ever took me seriously though and always acted like I had a stomach bug all the time or something seasonal, or they thought colitis but never did additional testing. But how I found this out was just doing my regular gyno exam and she drew blood, I met up with her a month later for my results she said levels were extremely high and I'm most likely all puffed up and I can never have gluten again, go on the paleo diet and see her in a month and that was that. Is there any additional testing I should be doing to see the damage? Or did that most likely show in my blood work?

[w8in4dave]

Because I am soy and corn intolerant on top of Celiac, I don't follow The Paleo diet regularly but I get alot of recipes from Paleo , They are Grain free. They call it the Cave Man diet.

[mommy-6]

I didn't even know there was an autoimmune paleo diet, I just looked it up it sounds super interesting. Nachos and diary are the best! I haven't had any milk (besides when cooking and I had an upset stomach) so I've been using almond milk but I'm not sure if cheese is something I can give up. I literally feel like I live for cheese haha. I've found some good sites for recipes for paleo that don't make it seem TOO bad which is most likely better than all the processed gluten free stuff I've been eating. I'm usually super busy so never have time to meal prep. But I'm sure you can find a paleo version of nachos I found one for Alfredo and it sounds super weird and interesting it's worth a try. It seems like you can make a paleo dish with anything.

 

 

I love cheese too... It may or may not be the reason behind what sent me to the ER... that is assuming some of my problems are just constipation. I was on a nacho spree leading up to that visit, lol. I just ordered a book called the "Paleo Approach: Reverse Autoimmune Disease and Heal Your Body" and the "Paleo Approach" cookbook..  I have been following her on FB for awhile because I knew something was wrong with me, but any time I'd mention anything about it, it was brushed off. "There's no pill to fix <insert symptom>..." kind of responses. Or "you're probably just constipated, here is a prescription for lactulose". I had just intended to "heal" myself until I found a doctor who thought we should test for Celiac. I haven't tried too many paleo conversions, I made banana bread with almond flour and it was good, but definitely not the same as wheat flour banana bread. I attempted to use spaghetti squash in place of pasta, but it wasn't as satisfying. I guess now though, there won't be much reason not to try more recipes  .

[sunny2012]

"I don't remember all gluten items making me feel sick? "

 

stick with 100% gluten free. You will eventually feel better all the time. You will eventually realize that you are very used to being pretty sick a lot.

 

I have been doing this for 20 plus years. Right now my biggest pet peeve is the idea of needing to "feel sick" when gluten is consumed. People ask me this all the time, "So how do you feel?? Was there gluten in that?". It damages the intestine regardless of any symptoms. Depending on which part of the bowel get the damage, it could take weeks to months of damage before we notice.