Question Regarding Accuracy Of Blood Tests ...

[LittleZoe]

I've been sick ever since I was little and I'm now 23. When I was in my early teens I finally got diagnosed with IBS. After doing my own research I decided to eliminate gluten, wheat, dairy & sugar from my diet. I ate this way for almost 2 years and felt great. I slowly reintroduced all but the dairy and have been eating it for the past 3-4yrs. I'm now having major stomach problems again with a huge pregnant looking bloated stomach, extreme fatigue, depression, anxiety, dark circles & many other symptoms of deficiency. In hindsight I can now look back and I realize that I've become sicker every year since I reintroduced the gluten/wheat.

I want to be tested for celiac so I can find out once and for all if I have it or if I just have a gluten/wheat intolerance (as I have lactose intolerance). My blood test came back negative for celiac so I've asked my doctor to test for IgA as I've read that if that is deficient then it will give a false negative on the celiac test. I really want to stop eating gluten/wheat again because I feel so sick and I'm getting really depressed about it. I do however want to do all the tests necessary before I eliminate it again.

My question is: if both these tests come back negative, showing that I do not have celiac, then is there pretty much a 100% chance that I don't have it. Can you get false negatives on both tests and still have celiac? I just want to make sure I'm not missing any tests. I don't think my doctor would send me for a biopsy if the two blood tests come back in the normal range. S

Any advice would be appreciated. Thanks.

[celiacgirls]

You can definitely get negative results on the blood tests and still have at least gluten intolerance. To me, gluten intolerance and celiac disease are the same thing but some doctors insist on the biopsy and/or positive blood tests.

My daughter's blood tests were always negative but she is now gluten free and feeling better. If your blood tests are negative, you should still eliminate gluten since you feel better without it.

[chocolatelover]

I have to agree with celiacgirls...my blood work was negative and I don't have the biopsy results yet, but I've been gluten free since the test (a whole 5 days now!), and already I'm feeling better. Today I cut all dairy because I was still having some gas and diarrhea. I feel even better today than I did yesterday. I don't know if I'll ever be "diagnosed" by the medical community as having celiac or a gluten intolerance, but I do know it makes me feel better not to eat it. I've heard of many situations where the blood work is negative and the biopsy is positive.

You know the other route to try would be Enterolab--many people have had positive results with the stool sample. I'm heading down that road myself, probably next week.

Good luck!

CL

[justjane]

As far as I'm concerned, if you were feeling better off of the sugar, dairy, and gluten, stay off of it! The proof is in the pudding, right?! You can still be gluten intollerant even if you had a negative biopsy and blood test. I had a positive blood test and negative biopsy, but am still convinced I am gluten intollerant. My doctor even gave me a note for it . Hope you feel better soon!

[LittleZoe]

Thanks everyone. I guess there is numerous reasons why I'd like to actually be diagnosed with celiac if I have it.

1. To me celiac is more severe then a gluten intolerance. If I knew I had celiac I would stay off wheat to a far greater degree then if I was just intolerant. With celiac I wouldn't be tempted to cheat but with an intolerance you can slip up now and again or cheat with less severe results. I know that because I've always been lactose intolerant and I seem to go on and off it which I'm sure would be devastating rather then inconvenient if I did that with wheat if I was celiac.

2. I don't want to feel like I'm going crazy anymore and I want confirmation that something is indeed wrong with me. It would also help for family and friends to be more supportive if I could actually put a name to all my symptoms. I bet it's hard explaining to people why you are going off wheat/gluten when the test results come back that your fine. It's so hard when the doctor's say your healthy and all your blood tests come back negative and your still soooooo sick.

I guess I just have to make a decision and stick with it. I feel like being diagnosed would end my suffering. If I'm not celiac I see myself going on and off wheat through the years not really knowing whether I need to be restricting it forever or not.

Not sure if that makes sense to anyone. I'm just so confused and upset right now.

[CMCM]

Once you have a little knowledge and suspicion about this, NOT knowing can drive you nuts. At least, it was that way for me. My mom was diagnosed with celiac disease in 1969. I didn't have the same symptoms, but I've had digestive issues my whole life. Things got progressively worse until I got really sick in Dec. 05. I had always thought my main problem was dairy, not gluten, despite my mom's history. I thought I had to be sick in the same way she was, but I've learned differently about that!

Well, I decided to not fool around any more and went the Enterolab route because it seemed to be able to show a lot of information without my having to beg and plead with doctors and pay big $$$ for an endless array of tests and procedures while the clueless doctors tried to pin down a solution. Here's what I learned: I got my mom's celiac gene AND a surprise gluten sensitivity gene from my late father. So my predisposition is there, strongly. I had the stool tests which showed auto immune activity. I also tested positive for casein sensitivity, which probably explains the lifelong problems I've had with dairy. My malabsorption test was fine, so at least that isn't going on...yet. Enterolab said given my results, the autoimmune activity was evident, the genes were there, and I should never eat gluten again. Malapsorption might have been occurring previously, but had largely healed due to my not eating much gluten anyway....or perhaps things hadn't progressed to that yet and I didn't have full blown celiac. At the very least I can say I have gluten sensitivity (confirmed thru the gene tests coupled with how I feel eating vs. not eating gluten), and from all I read, even gluten sensitivty is very nearly as serious as celiac disease in terms of the internal damage it can do, to say nothing of how sick you can get. Given my genes, I know that celiac disease could rear its head in a big way at any time. Or perhaps never. In any case, I definitely feel better NOT eating gluten, and I know what to watch for regarding celiac disease. What more do I need to know? I really think Enterolab is a very good solution for most of us who wonder about this, and knowledge from their tests gives us a direction to go in. Enterolab is NOT a fly by night type of thing. They are serious researchers and have a very special, directed interest in celiac disease, unlike 99% of the doctors out there. And they are being mentioned in more and more literature as a good method of testing. Just because YOUR doctor doesn't know about them...that doesn't mean much.

[LittleZoe]

I've read a lot about Enterolab from people on this site but as I'm in Canada I don't think this testing is available to me. I'm not sure if there is something similar in Canada.

I'm just received my blood test results in the mail as I requested a copy and I don't understand them. As soon as my IgA test comes back I'm going to be taking them to my naturopathic doctor so he can explain them to me and I want to see if he interprets them any differently.

This is what it said .... if any of you know what it means feel free to share!

Test: TTG ANTIBODY IGA

Within range: <5

Reference Intervals: <20 units

IgA antibody to tissue transglutaminase has approximately 95% sensitivity and specificity for gluten enteropathy. False negative results may occur with IgA deficiency or gluten-restricted diet.

(I am currently waiting on the test results of the IgA deficiency, but I don't know what the rest of the above results mean)

[Cruiser Bob]

Over the years I've had one food allergy blood test - allergic to almost everything (now I read into that leaky gut), and one very specific genetic blood test. Both showed no gluten issues. My dad is diagnosed celiac, both kids are thriving on a gluten-free diet and I'm starting to thrive again on a gluten-free, dairy/egg/nightshade and anything else fun - free diet.

I'm also just about to go through my second food allergy blood test to see what it shows.

I would suggest a gluten-free diet for life. The head of GIG said it best "go ahead eat gluten/wheat, all you're doing is shortening how long you will be on this earth by inviting all sorts of nasty, permanent health probems". If you're showing signs now, stop before it become permanent, or something else in your system starts to fail.

Vancouver is a wonderful place to be on a gluten-free diet. Finally, I do believe the stool tests are at a point now where they can positively diagnose Celiac.

Bob

gluten-free by diet for 10+ yrs

gluten-free by genes, but not tested

[JerryK]

Thanks everyone. I guess there is numerous reasons why I'd like to actually be diagnosed with celiac if I have it.

1. To me celiac is more severe then a gluten intolerance. If I knew I had celiac I would stay off wheat to a far greater degree then if I was just intolerant.

2. I don't want to feel like I'm going crazy anymore and I want confirmation that something is indeed wrong with me. It would also help for family and friends to be more supportive if I could actually put a name to all my symptoms.

After my results came back from Enterolab, positive for both Fecal Antigliadin and Transglutaminase....I got pretty wacked out about it myself. First I was in denial, then I finally decided to go two weeks completely gluten-free, which pretty much killed my denial. The two reasons you want to be diagnosed make complete sense to me, cause that is EXACTLY the way I felt and why I went back on Gluten to pursue the standard blood tests, to see if they confirm. I've also ordered up a gene test from Enterolab to see if I have the Celiac DNA markers.

Believe me, I understand your frustration...it'd be a lot easier if mushrooms grew out of your forehead to confirm the diagnosis....

The way I understand it is, Enterolab's testing can confirm Gluten Sensitivity and whether or not you have the Celiac genes. These are two pieces of data that you might want to have to make you feel like you've done due diligence. Enterolab will not tell you you have Celiac, but if you test positive for Antigliadin and Transglutaminase and are having symptoms when you eat it...you can make your own conclusion. I suspect this whole package is WAAAAYYYY more widespread than doctors realize.

I'm still waiting for my blood and gene test results, so we will see.

[aikiducky]

IgA antibody to tissue transglutaminase has approximately 95% sensitivity and specificity for gluten enteropathy. False negative results may occur with IgA deficiency or gluten-restricted diet.

I'm afraid the above is only true for people who already have extensive damage to the small intestine. Yes the TTg test is very good at detecting people with extensive damage, but the damage doesn't happen overnight, and in people who are tested earlier on (like possibly you, you're still quite young), the test is only something like 40 to 60% accurate. So it's quite possible that if you continue eating gluten and get tested in a few years time, that it would be positive. In any case, you can't rule out celiac just with a blood test, not when you have symptoms and a positive dietary response.

Pauliina

[LittleZoe]

I've finally got some great news!!! Little did I know that my naturopathic doctor is gluten sensitive and this is his specialty. He's been on a gluten free diet for 8 years. He has a saliva test that is done in Canada to test for the same thing that Enterolab tests for in the stool. He even did his own study where patients did both tests and they came back with the same results. The saliva test is only $50 and I had it sent off today. It will be 7-10 days and he is pretty confident that it's going to confirm my belief that I either have celiac or a gluten intolerance which to him is the same thing and needs to be treated the same way, gluten free for life.

It was so nice to find a doctor that really understood what I'm going through and had the means to test me. He recommend that I start a gluten free diet now that I've take the saliva test. I'll be so happy to get those results back and to finally have some confirmation that I do need to eat gluten free. I'm so glad I went to see him after my MD said nothing is wrong with me and that I don't have celiac.

Thanks for the advice and support everyone. I'll let you know what those results reveal. It is supposed to have a very low rate of giving a false negative unlike the blood tests that the doctors do. I'm glad there was alternative testing that I could do in Canada because Enterolab would have cost me a fortune being in Canada.

[LittleZoe]

Well I've got another update.

My blood results came back negative and the doctor was going to send me away telling me that I don't have Celiac and nothing is wrong with me. I insisted on getting the IgA blood test because I've done my research and I've read that if that comes back low (or deficient) that it will give a false negative on the celiac test. Well, lo and behold I get a call from the doctor's office, I got in to see her, and how she all of a sudden thinks it's likely that I have Celiac disease as well based on my symptoms and the IgA indeed coming back low which discredits the other blood test. She said that this earns me a trip to the gastroenterologist for a biopsy.

I need to vent for a minute. Do you know why, on average, it takes 11 yrs to be diagnosed with Celiac? I have all the presenting symptoms with a previous positive dietary response and she sends me away after having done just one blood test. If I would have not done my research and asked for the other blood test I would have gone god knows how many more years undiagnosed. As far as she was concerned this one blood test ruled celiac out entirely.

So now I have a decision to make. I would also like some opinions about it.

I feel very sick and the thought of having to keep gluten in my diet for another month while I get an appt for a biopsy is not appealing to me at all as it's affecting my ability to work and I NEED to be working. I've already sent away a saliva test which is the same as the testing in the US that uses stool and I know that's going to come back positive. I know that I have Celiac and that I need to adopt a gluten free diet for life now. Based on all of that and the fact that I'm positive the saliva test will give me confirmation I'm trying to decide if the biopsy is even worth all the hassle. In reality I could have celiac and still get a negative biopsy if the damage isn't severe enough for them to see or if they don't take pieces from the damaged areas.

I do think the biggest and best test of all is a positive dietary response in my case. If I can't digest gluten it doesn't really matter what the blood/biopsy/saliva tests tell me.

Sorry for the long post! Had to get all that off my chest!

[aikiducky]

I think whether or not to do the biopsy depends on what you need it for. If you think it would be useful to have an "official" diagnosis, then you should do the biopsy. I can imagine that with a positive biopsy, some other tests and treatments might be offered to you (like checking for vitamin deficiencies or osteoporosis, for example). But on the other hand, if the biopsy is negative, your doctor is likely to drop you again with a there's nothing wrong with you...

I don't have an official diagnosis because I couldn't face eating gluten any more and so I can't be meaningfully tested. I feel completely healthy though so I decided that I didn't need a doctors support for what I eat. If going gluten free hadn't helped me so well I might feel like I need to work together with a doctor to rule out other problems though.

I know in the US having a diagnosis can actually be harmful because it can affect health insurance. But I don't know if that's a consideration in Canada.

I know it's a tough decision, but you need to think it through now, because later it will be even more difficult to go back on gluten if you decide you'd want a biopsy after all.

Pauliina

[par18]

I do think the biggest and best test of all is a positive dietary response in my case. If I can't digest gluten it doesn't really matter what the blood/biopsy/saliva tests tell me.

Sorry for the long post! Had to get all that off my chest!

I read through all your posts just to get to the above acknowledgement. What difference does it make what you call it if it (gluten) bothers you? You can test yourself until the end of time and I don't care what the result is (positive or negative) if staying on the diet is the only tlhing that gives you relief then that is what you are going to have to do. I understand those individuals who run the blood tests and perform the biopsies need to make a living too but if a person if fortunate enough to attempt the diet and respond in a positive manner what more proof do you need. As far as I am concerned the diet is the "only" reliable test there is. Getting people to do it correctly and with dedication is another matter. Good luck.

Tom

[key]

I would say go ahead and suffer for a month and have a positive diagnoses. If gluten still makes you sick, despite having a negative diagnoses, then go gluten free anyway.

I have been gluten free for 18 months. My blood work was borderline for celiac disease then. I had been gluten free for two months. It made me so much better to be gluten free at first, but 18 months later and I am still having more symptoms then I would like. I can't seem to reintroduce gluten, because then I am violently ill, but having family and friends not be on board is distressing at times. They think that i made it up. My husband is very supportive. I think for people that go gluten free and their symptoms just disappear and they feel better all the time, then that is easier. You will definitely question what you are doing if you don't have a firm diagnoses, but I avoid gluten like the plague without a firm diagnoses.

I know I was rambling and everyone has their own opinion, but ultimately it is your choice. Just thought I would share my experience.

Monica

[CMCM]

Unfortunately, we are ALL (and that includes doctors) programmed to want a specific test to reveal a specific diagnosis with total clarity. The sad thing is that celiac disease & gluten sensitivity are very VAGUE and not well understood...not yet. The blood tests for celiac disease tend to be revealing if the state of your condition has advanced into quite a lot of damage....hence, it will show up on the blood test and doctors can grasp that with clarity. The UNCLEAR thing is the humongous numbers of people whose reactions or intestinal damage has NOT yet progressed for whatever reason, and who therefore won't be so readily identifiable. Unfortunately, that latter group is MOST OF US!!!!

Doctors also come from a background in which nutrition is barely discussed as either a CAUSE or a SOLUTION to medical problems. Doctors are more oriented to treatment SYMPTOMS and not underlying causes. This presents quite a dilemma for people with dietary-caused illnesses.

Another thing which is just now becoming more widely realized is that it's not just about celiac disease. Celiac disease is a rather small subset of the very BIG problem of gluten sensitivity, which they are now beginning to realize affects perhaps up to 80% of Americans. This could partly explain the explosion of obesity, diabetes, lupus, arthritis, high blood pressure, heart disease....the list goes on and on, but one parallel with the explosion in numbers of people with these problems is that in tandem with this goes the expansion of grains in our daily diet. Unfortunately, the medical profession STILL hasn't put all this together. And gluten sensitivity can range from zero observabale symptoms (on the outside) to the worse case scenario, celiac disease....and someone who is gluten sensitive would not progress to celiac disease unless he/she has the celiac genetic marker which could allow active celiac disease to be triggered. Keep in mind that celiac disease is something you have due to eating gluten AND the active disease being triggered. My mom was diagnosed with celiac disease 40+ years ago. She had it then, it nearly killed her in fact. She stopped eating gluten, her villi recovered, she is healthy and well and at this point does NOT have celiac disease. If she took every test known to doctors she would be negative right now. However, if she ate gluten, celiac disease would begin again with her. But meanwhile, right now, she only has the predisposition/propensity to get it.

So back to the problem of testing. Here's a question. If you suspect you have a problem with gluten and dairy, and you've eliminated these things and felt better, you pretty much have your answer. I mean, if your doctor said "No, you don't have celiac disease" would you then decide to eat gluten and/or dairy even though you KNEW it would make you ill? Of course not!

It's a matter of coming to terms with the situation, I think. Most of us have had this issue to deal with. For some of us it takes longer than others. I really recommend Enterolab's panel of tests....you can learn your two genes and therefore know what your predisposition is. You can learn if you have antibody reactions and autoimmune activity going on. You can learn if you have malabsorption, which would be a bit more indicative of some degree of celiac disease. You can also learn if you are sensitive to casein...the milk protein (and different from lactose intolerance). So armed with this body of knowledge, you will have a better idea of how to proceed.

If you are depending on wolfing down enough gluten for a long enough time to show on a blood test, or to incur enough damage to be visible on a biopsy, well, I think that's silly. Get the basic knowledge from the Enterolab tests and observe what a strict gluten free (and possibly casein free as well) diet will do for you...give it a month, and you will know what you need to know. You do NOT need (in the majority of cases) for a doctor to put the stamp of approval on the diagnosis. If you broke out in a rash every time you ate a strawberry, would you spend a ton of $$$ just to get a doctor to tell you that you were allergic to strawberries? Would you continue to eat them if the doctor claimed you weren't allergic to them?

We need to use our brains and yes, our gut feelings here. Most of us more or less "know", which is how we found our way to this site!!!

[nora-n]

I've finally got some great news!!! Little did I know that my naturopathic doctor is gluten sensitive and this is his specialty. He's been on a gluten free diet for 8 years. He has a saliva test that is done in Canada to test for the same thing that Enterolab tests for in the stool. He even did his own study where patients did both tests and they came back with the same results. The saliva test is only $50 and I had it sent off today. ......... It is supposed to have a very low rate of giving a false negative unlike the blood tests that the doctors do. I'm glad there was alternative testing that I could do in Canada because Enterolab would have cost me a fortune being in Canada.

Little Zoe, please tell us the name of the test, I am so curious.

nora

europe

negative tests, negative biopsy but I was only back on gluten for five weeks.

Very sensitive to accidental glutening.

[LittleZoe]

Little Zoe, please tell us the name of the test, I am so curious.

nora

europe

negative tests, negative biopsy but I was only back on gluten for five weeks.

Very sensitive to accidental glutening.

When I find out more from my naturopathic doctor I will let you know! I need to get some more details.