Blood Tests Reliable?

[MelissaJ80]

Celiac disease runs on both sides of my family and I was tested last year through a blood work. The results came back negative but my doctor said that I should get an endoscopy to be 100% sure since it runs in my family. My brother has it, so he's the closest relative, others are aunts and uncles, cousins etc.

Are blood tests as reliable as taking a biopsy sample?

For the past 2 weeks I've had terrible heartburn, only just a few days ago has it subsided. I'm lactose intolerant and I do get a lot of gas, but I'm not sure if that's from any kind of fiber I'm taking in. I'm just unclear about what I'm feeling, and I'm wondering if it's worth getting an endoscopy.

[ShayFL]

Generally there are no false POS on blood, but many false NEG. I am one of them.

I would say, yes, go ahead and get the biopsy because if it comes out POS you will get the dx and know what you need to do to keep yourself healthy for the rest of your life (and avoid auto-immune diseases and cancers associated with Celiac).

BUT and this is a big BUT, if the biopsy comes back NEG, you may wish to try a gluten-free diet to see what happens. Many find that things they didnt not realize (symptoms) disappear gluten-free. And after 3 months of healing you may just find you can digest LACTOSE again. It is the tiny tips of the villi in your intestines that produce lactase that breaks down lactose. If you have Celiac, then those little tips are likely damaged and that is why you cannot do dairy. (Note not every Celiac can have dairy once healed, but MANY can).

Ask your doctor for a copy of the Celiac bloodwork you had done and post it here (it is your legal right to get copies). Unfortunately, not all doctors are real good at interpreting them. We see it time and time again in here. An obvious POS, but the doctor said all is fine.

[Tim-n-VA]

One negative aspect of the TTG antibody is that it can be falsely positive in a patient who has another autoimmune condition. TTG false positivity has been described in patients with both type I diabetes and autoimmune hepatitis. Theoretically, it can also be falsely positive in other

That quote is from the webite of Open Original Shared Link.

Free information on the internet is not always accurate. You now have two answers on whether you can get a false positive. I'm don't know what real answer is but my understanding of testing procedures is that all tests have the potential for false negatives and positives.

[ShayFL]

What I would be interested in is all of those "false" POS for other diseases, how would those people respond to a gluten-free diet. THAT would be a very interesting study which would likely be very revealing.

It is true that information on the net can be wrong. Even in respected medical journals. History is rife with the medical community having to eat crow. Hey cigarettes used to be "just what the doctor ordered". Hard to believe.

The only truly accurate test for Celiac/gluten intolerance is a 100% gluten free diet. Regardless of what blood and biopsy say, if you have a POS response to the diet, you have your answer.

Tests are just that. They arent the end all be all.

[happygirl]

What blood tests did he run for Celiac?

[Tim-n-VA]

A postive response to a gluten free diet is evidence that you shouldn't eat gluten. It is not a positive test for Celiac. If you care which body system is reacting to the gluten, other tests are required. If you only want to know what to eat today, the dietary response is sufficient.

Everyone has a different desire of diagnosis from the medical community. Telling someone that a positive dietary response is all they need without knowing what they want from the mainstream medical community can cause lots of problems.

[ShayFL]

I stand by my original post. I recommended the biopsy for the very reasons you are arguing Tim.

I never said that a gluten-free diet dx Celiac. I said that a POS response to the diet is accurate for Celiac/gluten sensitivity.

Honestly, Tim, why must you try your best to cause hostility in here with me. I have no beef with you. And I will not respond to anymore of your posts. I will focus on the person who needs the help and not you. I am here to help not fight.

[Tim-n-VA]

I stand by my original post. I recommended the biopsy for the very reasons you are arguing Tim.

I never said that a gluten-free diet dx Celiac. I said that a POS response to the diet is accurate for Celiac/gluten sensitivity.

Honestly, Tim, why must you try your best to cause hostility in here with me. I have no beef with you. And I will not respond to anymore of your posts. I will focus on the person who needs the help and not you. I am here to help not fight.

First let me apologize if you thing I'm targeting you in any way. I post here only because I think I might occasionally have some perspective that would help someone else. Otherwise I'd just read the parts I need. Having been on several of these boards it seems that most people don't read every message. When I see something posted that is clearly wrong, I think I have responsibility to the other members to post an alternative position. As above, I didn't say you were wrong about blood tests I only offered another website that had a different view.

With my second message I was responding to this quote:

The only truly accurate test for Celiac/gluten intolerance is a 100% gluten free diet.

I've only been reading this site for a year or so but it seems that at least once or twice a month someone is facing the problem of going back on gluten for a test because they need the mainstream medical diagnosis for some reason. I believe that at least part of that is because of people making a blanket statement that the dietary response is all anyone needs (not you specifically). I frequently will respond to those posting recommending that they not go gluten free until they have all the tests they plan to have. In those cases I'm not trying to be hostile to the other posters but trying to avoid problems for others, perhaps someone only reading the board and not actively posting.

In any case, I am sorry that my post upset you.

[ShayFL]

Thank you for that Tim.

If you read my original post, I was encouraging the biopsy. But I was also letting this person know that they have options even if ALL tests come back negative.

I didnt suggest going gluten-free and then getting tests.

Tests should be done first.

But if doctors throw their hands in the air and say "There is nothing wrong with you." There is absolutely no harm in a gluten-free diet. And MANY on this forum have benefited from it with NEG tests. Many. I am one of them.

[Gemini]

That quote is from the webite of Open Original Shared Link.

Free information on the internet is not always accurate. You now have two answers on whether you can get a false positive. I'm don't know what real answer is but my understanding of testing procedures is that all tests have the potential for false negatives and positives.

That's why a FULL Celiac panel should be done and not just a tTg. I wouldn't exactly call it a false positive.....Hashimoto's thyroid will elevate tTG also. I have both that and Celiac. The other test to couple with the tTg is the EMA. It is 100% specific to Celiac Disease so if both tTg and EMA are positive, then the odds used by the medical community to make a diagnosis are 99% that you have Celiac Disease.

The blood work also tends to be more accurate if you have advanced, end stage celiac disease. You need to have a flaming autoimmune reaction going on to hope for an accurate test result. I guess I was lucky....I failed all blood work tests by huge numbers so avoided the endo and went gluten-free right away. Best thing I have ever done in my life!

[MelissaJ80]

Thank you all for responding.

I don't know which blood tests were done, I'm going to look in my files to see if something is there.

I don't seem to have symptoms of celiac, but I do have symptoms that are fairly common in some people with out celiac, like gas, bloating, lactose intolerance. I noticed that I cut down on my fiber and I'm not bloated anymore. So that could be it. But I'm really interested in finding out whether or not I have this disease so I can prevent any damage. I'm rather paranoid, instead of feeling sick.

My heartburn and indigestion has gone away, but I'm feeling a bit tired and foggy. My face feels a little warm, but not the rest of my body. This could be just a bug. Every time I get sick I think it's celiac.

Thanks again.

[bsiyatadshmayah]

I'm just going to sound in on my opinion regarding going gluten-free. Yes, if one goes through all the hoops and comes back with negatives on all tests, and there are no other options, then going gluten-free and see how you feel should be considered. Another reason to go gluten-free in the absence of a definitive diagnosis is one suspects that eating gluten will cause irreparable harm. If a child, for instance, is really suffering, many parents will just go gluten-free.

But having said that, there is a downside to going gluten-free. All tests for celiac, except a DNA test, will eventually be useless. The longer the gluten-free diet, the more useless any blood tests or biopsies, for most people.

The other disadvantage to going gluten-free is the social aspect. To be truly gluten-free can be a socially isolating experience, especially at holidays, birthday parties, sports celebrations and the like. This is especially true for people of the Catholic and Jewish faiths. I read in "Celiac Disease: A Hidden Epidemic" that 50% of those with celiac disease fail at their diet during these times.

If one feels they are merely gluten intolerant, then an alternative, in order to avoid these potentially painful social experiences, is to go "low gluten". But, this won't help much if you are truly celiac or especially gluten sensitive. And if you are allergic, low gluten could kill you.

That's why seeking clarity seems to me to be a good option. Often not an easy one however.