How Much Gluten Before Blood Test? Please Help!

[hineini]

My doctor gave me a lab slip for "celiac disease diagnostic" blood tests. There is nothing more specific on it than that, so I don't know what type of test this is but considering my insurance I'm sure it's the most basic, cheapest, standard initial test for celiac disease.

Problem is, I've been on a gluten-free diet for 2 months. He never bothered mentioning to me (probably because he doesn't realize exactly HOW gluten-free I am) that I need to be fully glutened up before getting my blood tested. When I found this out yesterday, I promptly went to Starbucks and bought a croissant (which wasn't that good, dammit!)

I don't mind doing a few days or weeks of gluten before the test - I get sick from it but not as bad as a lot of people whose posts I read on this board. But I've heard conflicting things.

Some websites say 2 weeks of 2-3 servings of gluten a day should be enough to make the antibodies act up (if in fact I have celiac disease). Other people have told me I have to be eating gluten for 3 months before I take the test.

What do you think?

(PS I know that the blood test is not very reliable - I fully plan, when I have the $$, to send away for the EnteroLab stool test. But my doc will probably not take it seriously so I want to maximize my chances of this blood test being accurate.)

[jerseyangel]

Hi and welcome

Before testing, you need to consume the equivilant of 3-4 slices of bread a day for 3 months.

2-3 weeks won't be enough time--also, be sure that they run the Complete Celiac Blood Panel.

Best of luck!

[par18]

My doctor gave me a lab slip for "celiac disease diagnostic" blood tests. There is nothing more specific on it than that, so I don't know what type of test this is but considering my insurance I'm sure it's the most basic, cheapest, standard initial test for celiac disease.

Problem is, I've been on a gluten-free diet for 2 months. He never bothered mentioning to me (probably because he doesn't realize exactly HOW gluten-free I am) that I need to be fully glutened up before getting my blood tested. When I found this out yesterday, I promptly went to Starbucks and bought a croissant (which wasn't that good, dammit!)

I don't mind doing a few days or weeks of gluten before the test - I get sick from it but not as bad as a lot of people whose posts I read on this board. But I've heard conflicting things.

Some websites say 2 weeks of 2-3 servings of gluten a day should be enough to make the antibodies act up (if in fact I have celiac disease). Other people have told me I have to be eating gluten for 3 months before I take the test.

What do you think?

(PS I know that the blood test is not very reliable - I fully plan, when I have the $$, to send away for the EnteroLab stool test. But my doc will probably not take it seriously so I want to maximize my chances of this blood test being accurate.)

Hi,

How did you respond to the 2 months on gluten-free diet?

Tom

[hineini]

See my separate post entitled "This is hell." I can't do this. I feel way too sick. I'm going to have to do the blood tests on a gluten-free diet and if they come up negative, I"ll just send for the stool test. I simply CANNOT live through this hell for 2-3 months.

BTW, to respond to the question, I responded well - Total stop of diarrhea (in fact I've been constipated, but I think that's due to being on a opioid painkiller), near total stop of GERD, improvement in sleeping, less gas, less bloating.

[gfp]

My doctor gave me a lab slip for "celiac disease diagnostic" blood tests. There is nothing more specific on it than that, so I don't know what type of test this is but considering my insurance I'm sure it's the most basic, cheapest, standard initial test for celiac disease.

Problem is, I've been on a gluten-free diet for 2 months. He never bothered mentioning to me (probably because he doesn't realize exactly HOW gluten-free I am) that I need to be fully glutened up before getting my blood tested. When I found this out yesterday, I promptly went to Starbucks and bought a croissant (which wasn't that good, dammit!)

I don't mind doing a few days or weeks of gluten before the test - I get sick from it but not as bad as a lot of people whose posts I read on this board. But I've heard conflicting things.

Some websites say 2 weeks of 2-3 servings of gluten a day should be enough to make the antibodies act up (if in fact I have celiac disease). Other people have told me I have to be eating gluten for 3 months before I take the test.

What do you think?

(PS I know that the blood test is not very reliable - I fully plan, when I have the $$, to send away for the EnteroLab stool test. But my doc will probably not take it seriously so I want to maximize my chances of this blood test being accurate.)

First off many of us don't recognise a huge difference with the amount of gluten we eat. My reaction is no different from a crumb to a pizza. If you are going to do the test then I would want to make sure it is accurate.

As for the tests, if you get a full panel it is VERY accurate if positive.

The only doubt is something like 2% of positives don't have positive biopsies but IMHO and most people a clean biopsy and +ve blood tests these people go on to have damage if they don't go gluten-free.

On the other hand a false negative can happen because of the timing if you have been gluten-free. You also need to check TgA which will show if you are naturally deficient in IgA which is possible and not uncommon, this just means you have a lower IgA normally so the normal range is not applicible.

On the other hand biopsies can give false negatives much more easily for reasons from bad sampling to inexperienced people interpreting the slides.

If I was in your position I would see the doctor again and mention you have been gluten-free and hence want to make sure the tests are definitive. You mightest well make sure on quantity ... what is debatable is the length of time.

The last thing you want is a false negative or you have to go through it all again.

If you do go for a biopsy then you should have it scheduled straight after the blood test results otherwise you need to go through the whole eating gluten AGAIN.

The enterolab testing is more sensitive which means less chance of a false negative and also picks things up earlier but I don't see the advantage of this AFTER a positive diagnosis but I am not as knowledgeable about the enterolab tests so perhaps wait for someone elses reply.

[ravenwoodglass]

BTW, to respond to the question, I responded well - Total stop of diarrhea (in fact I've been constipated, but I think that's due to being on a opioid painkiller), near total stop of GERD, improvement in sleeping, less gas, less bloating.

In more medically advanced and less pharmacologically dependent countries this would be diagnostic enough. Especially with the reaction you described in your other post. You can of course continue the challenge as I described in response to your other post before I saw this one but I believe your body has already answered the question. If I relyed I my doctors and their tests I would most likely be dead by now. The challenge had the same effect on me that yours did and I couldn't get off the bathroom floor to get to the biopsy appointment, my GI diagnosed me celiac at that time after he had misdiagnosed me for years (here have a prozac and some antispasmotics and see me in six months). He still apologizes whenever I see him.

[hineini]

Just got off the phone with the doctor.

He said:

-I shouldn't eat gluten if it makes me sick

-"The proof is in the pudding" (I.e. the fact that I feel so much better on a gluten-free diet means *something* is up, likely Celiac, and I shouldn't be eating gluten)

and last, but not least..

-No, I don't need to eat gluten in order for the antibodies to show up

WTF?!!!!????????????????? This contradicts everything I've heard and read, which say you DO have to be eating gluten in order for the antibodies to show up.

But guess what? I've let go of the outcome. After 48 hours trying a "gluten challenge" I grew tired of being so sick and I've been strictly (stricter than ever!) gluten-free again since Saturday afternoon. I'm going to take the blood test next weekend and if it comes out negative - Well, so be it.

I also sent away for the full Enterolabs panel today so hopefully that will give me some answers.

[eleep]

If I were doing this again, I'd just go for the Enterolab test first. I only lasted a week trying to "gluten challenge" before my blood test and it was inconclusive. I ended up paying about 2/3 of what the Enterolab testing cost even with the copay on my insurance (but I've got kind of crappy student insurance).

eleep

[gfp]

Just got off the phone with the doctor.

He said:

-I shouldn't eat gluten if it makes me sick

-"The proof is in the pudding" (I.e. the fact that I feel so much better on a gluten-free diet means *something* is up, likely Celiac, and I shouldn't be eating gluten)

and last, but not least..

-No, I don't need to eat gluten in order for the antibodies to show up

WTF?!!!!????????????????? This contradicts everything I've heard and read, which say you DO have to be eating gluten in order for the antibodies to show up.

But guess what? I've let go of the outcome. After 48 hours trying a "gluten challenge" I grew tired of being so sick and I've been strictly (stricter than ever!) gluten-free again since Saturday afternoon. I'm going to take the blood test next weekend and if it comes out negative - Well, so be it.

I also sent away for the full Enterolabs panel today so hopefully that will give me some answers.

I would not take the tests if I were you. A false neg is not a good thing to have for many reasons.

Your Dr. may be less than knowledgeable on the tests but most Dr.s don't want to admit to mistakes like this.

You can find yourself in a position insurance wise where you have to write you tested negative.

On the other hand, if you push them for this on what they said then you can get a +ve diagnosis and always claim later, if its convenient for insurance etc. you were never tested.

On the other hand you might be in a position needing to prove this (hospital etc.) and you can say the Dr. stopped the challenge because your reaction was so severe.

Really think about this... I'll try and find some med papers, you do the same which state the eating gluten before testing.

[hineini]

I would not take the tests if I were you.

Thanks for your concerns. Unfortuantely it looks like getting tested will be what makes the most sense right now, as my doctor included celiac disease tests on a whole panel of other bloodwork I'm getting done. I know he will support me being gluten-free (if not also diagnosing me celiac disease) due to my positive results from a gluten-free diet. I don't anticipate the insurance thing being a problem, I have a whole lot of health problems which are hard to get covered at times and I've been doing okay so far. I'm good at advocating for myself and challenging insurance when necesary, and I also don't rely on western medicine as my only source for healthcare. But thanks for the perspective!

[Jestgar]

Antibodies should last a while, and your one day challenge probably boosted them.

Please let us know when you get the blood test back. I'm sure everyone will want to know.

[tarnalberry]

Antibodies should last a while, and your one day challenge probably boosted them.

Please let us know when you get the blood test back. I'm sure everyone will want to know.

The problem with this theory is that they're doing a blood test for antibodies which are generated in the intestines, a system which is designed to keep all but small molecules out of the bloodstream. You have to ingest enough gluten to damage the intestines sufficiently for them to 'leak' antibodies that would not normally enter the bloodstream. That is why it requires being on so much gluten for so long - you need to guarantee significantly damage to the intestines so the blood tests will be able to detect the antibodies.

[gfp]

The problem with this theory is that they're doing a blood test for antibodies which are generated in the intestines, a system which is designed to keep all but small molecules out of the bloodstream. You have to ingest enough gluten to damage the intestines sufficiently for them to 'leak' antibodies that would not normally enter the bloodstream. That is why it requires being on so much gluten for so long - you need to guarantee significantly damage to the intestines so the blood tests will be able to detect the antibodies.

Its a lot of probablies....

hineini: as a minimum, since your Dr. sounds receptive I would try and discuss what about a false negative with him.

Take some of the papers on the testing and highlight parts so not to waste his/her time looking over them.

Take some of Fine's papers as well since this doesn't rely on the leaky gut .... perhaps he could just swap the test over ? From an MD's perspective this is just covering bases but if they are a good MD they will also listen to any concerns regarding the false neg... either way its going to be easier to have discussed this prior to the procedure IMHO and at least have the tests noted that you were unable to have guten prior to the tests due to a strong reaction. You never know when you are going to change Dr. and this type of thing is often overlooked if its not in black n white.

[tarnalberry]

Its a lot of probablies....

This is far from an exact science.

[Jestgar]

If you've only been gluten-free for two months its unlikely you've undergone a lot of healing. If you've been gluten-free for a year, the Abs might take longer.

Since a lot of the joint inflammation and neural stuff is probably caused by Abs, we can just ask people:

If you have neuro or joint symptoms to gluten and have been gluten-free for at least one year, do you still get these symptoms when glutened?

J Clin Gastroenterol. 2003 Nov-Dec;37(5):387-91

Anti-tTG results were positive in 36 of 42 patients before GFD (80.95%), while they were positive in 11 of 34 (32.35%), 1 of 17 (5.88%), and 0 of 6 (0%) of patients with a persistence in histologic lesions 6, 12, and 18 months of GFD respectively

Thirty-eight of 42 (90.47%) patients adhered to a strict GFD. Four patients were found to have occasional dietary transgression, and in all we noted a progressive decreasing of anti-tTG after 6 months of GFD and negative anti-tTG after 12 months of GFD, but sorbitol H2-BT persisted being positive during the entire follow-up

[hineini]

This is all very helpful. I wish my doctor was more accessible.

Meanwhile, I"m refusing to stress out.

I'm getting my blood test on Saturday, I will have been gluten-free for 2 months then with a 2-day gluten-binge a week ago.

I also just sent away for the Enterolab tests.

So answers will come within the next few weeks, whether or not they are the answers I want or answers my doctor takes seriously is another question... But answers will be had, hopefully.

Thanks for all your support and of course I will let you all know what I find out!