How Long On Gluten Before Testing?

[oaxacaborn]

Hello all,

This is my first post, so please forgive if I ask questions that have already been addressed on this forum.

I've been Dx with corn and dairy allergies, and also with a wheat intolerance. Although the test results didn't indicate the wheat to be as severe as the other allergies, I still definitely have symptoms when I eat wheat, oats, and other gluten-containing grains. In addition, I have hypothyroidism as well as some hormonal imbalance issues, which are being treated through medication and supplements as Rx'd by my health care provider.

However, I am still having numerous issues with my health. I suspect it might be celiac disease, so I'm going to have the Antigliadin Antibody blood test done.

Here's my question -- since I've been off gluten for about a year now, and I would like feedback as to how long I need to go back on gluten before I have the blood work done. I know it's important to have enough gluten in my system to have an accurate test. My health care provider suggested eating wheat daily for only a week, but that sounds too short to me. The last thing I want is a false negative test result!!!

If it makes a difference as to how long/how much gluten I need to ingest, I'm a slightly built, female in my early 20s. If you have any more questions, or need pertinent information that I left out, I'd be glad to fill you in.

Anyone else out there who had to go back on the gluten to be tested? Could you share your experiences, and tell how long you had to do so?

Thank you SO MUCH for your input!

[Ursa Major]

Hi, and welcome to this board.

Unfortunately, after being off gluten for a year, you would have to eat a lot of gluten (at least four slices of bread a day) for about six months to even have a remote chance of testing positive. For some people it would take more like a year to destroy their villi again to such an extent to be able to test positive.

And yes, that is what you would have to do: Destroy your villi and very likely make yourself very ill in the process, possibly causing permanent damage to yourself. Really, a terrible idea.

A better alternative would be to be tested by Open Original Shared Link. Their testing will still be accurate up to a year of being on the gluten-free diet, and you won't have to go back to eating gluten to do it. I asked them last month, and they said that even after being on the gluten-free diet for more than a year, I could still do it. Too bad I can't afford it.

You might have other intolerances that still cause you to be sick. An elimination diet would be a good idea. Are you eating soy? It could cause the same kind of symptoms as celiac disease, as can eggs and rice (rice will make me just about as ill as gluten grains).

[tarnalberry]

What I have read points to about three slices a day for three months. That's an 'average' (the mean of the curve, if you will) so you could be on either end of the distribution - would show damage sooner, or won't show damage until later. There are no 'guarantees' on this one.

[Ursa Major]

What I have read points to about three slices a day for three months. That's an 'average' (the mean of the curve, if you will) so you could be on either end of the distribution - would show damage sooner, or won't show damage until later. There are no 'guarantees' on this one.

While that is what doctors suggest, from everything I have read, most people will test negative after only three months. And the doctors will then tell them that there is 'no way' they have celiac disease.

But even going back to eating gluten for three months is a terrible idea.

And as far as I am concerned, any doctor suggesting that people should purposely destroy their villi just for celiac disease testing should be sued for malpractice. No doctor in his right mind would tell a diabetic to eat lots of sugar to see if it will really make them sick. Why tell somebody intolerant to gluten to purposely eat gluten and possibly make them deathly ill, not to mention maybe causing intestinal cancer, just for testing? There are better ways of confirming celiac disease.

[oaxacaborn]

Thank you, everyone, for your input. I really appreciate it!

Another board I was on referenced Dr. Green's book "Celiac Disease: The Hidden Epidemic" (Feb. 2006). According to this poster:

Dr. Green says "we arbitrarily use a standard set by Michael Marsh, M.D., from England, and a long-standing expert in celiac disease and say that a gluten challenge consists of eating about 4 slices of bread/day for a month... If people are tolerating the gluten well, we would prefer that they remain on gluten for at least three months before having a biopsy. (pg 53)" He says that you must have a biopsy after the challenge, not blood work. He also says that some people will not relapse (show damage) for more than a year on a challenge.

[Ursa Major]

Thank you, everyone, for your input. I really appreciate it!

Another board I was on referenced Dr. Green's book "Celiac Disease: The Hidden Epidemic" (Feb. 2006). According to this poster:

The only problem I have with Dr. Green is, that he still insists on a positive biopsy being the 'gold standard' for diagnosing celiac disease.

There is plenty of evidence that only people with celiac disease in the end stages of the disease will have destroyed villi, which by that time are extremely ill and might have developed other diseases and intolerances due to undiagnosed gluten intolerance.

If people with heart disease would be ignored until the end stages before they'll be diagnosed with heart disease, they'd all be dead by the time they're diagnosed.

Or they wouldn't diagnose diabetes until people fall into a diabetic coma, to make sure they 'really' have it.

[jerseyangel]

This is strictly my own opinion, but thinking back on the time I've been on this board, I don't believe I've ever heard of someone doing the gluten challenge and having a positive biopsy.

Has anyone gone on to have a positive test?

[oaxacaborn]

The only problem I have with Dr. Green is, that he still insists on a positive biopsy being the 'gold standard' for diagnosing celiac disease.

There is plenty of evidence that only people with celiac disease in the end stages of the disease will have destroyed villi, which by that time are extremely ill and might have developed other diseases and intolerances due to undiagnosed gluten intolerance.

You make some really fantastic points, Ursa Major! Sure doesn't make much sense at wait until there is that much damage.

This is strictly my own opinion, but thinking back on the time I've been on this board, I don't believe I've ever heard of someone doing the gluten challenge and having a positive biopsy.

Has anyone gone on to have a positive test?

Jerseyangel, are you also referring to serological test results? I agree that someone on the challenge wouldn't necessarily have extensive villi damage showing up on a biopsy (or, at least, they wouldn't have non-patchy damage) -- but wouldn't the blood tests following a sufficient challenge show some sort of elevated antibody levels?

Sorry, I'm pretty new to this.

[rez]

A gluten challenge involves a biopsy, NOT a blood test. Serological markers take more time to become postive versus biopsy. You should partner with a good educated GI who is going to perform a biopsy. Dr. Green is an expert on Celiac and I would agree with his challenge instructions. You have to remember, if the pathologist who reads the report doesn't look for Marsh 1 and 2 damage, then they won't diagnose Celiac. It's not because the gluten challenge doesn't work, it's because the pathologist is incorrectly reading the results.

[e&j0304]

How important is a diagnosis to you? If you will spend the rest of your life wondering, I would urge you to do the challenge if your body can tolerate it without too many ill effects. I am right now trying to decide if we should do a challenge with my son and I know first hand how hard a decision it is and it shouldn't be taken lightly.

I also wanted to add that unless you have lots of money burning a hole in your pocket, don't use Enterolab. He has not published his research and it is not accepted by many in the medial community. I actually did spend about $800 or so total to test both of my kids and my daughter's came back positive and my son's negative. My son actually has worse symptoms than my daughter and has terrible diarrhea when eating gluten. I can't say I fully trust their results and likely they will just tell you to go gluten free which you already are, so why waste your money? I fully understand wanting to know for sure and that's why I tested through them for my kids, but I regret doing it. I know many people on here love Enterolab and I hope I don't offend anyone. I just wanted to give another opinion.

Good luck. I think the key is to find a REALLY good dr. who will look for that Marsh 1 damage and not just for totally flattened villi. I hope you find the answers you're looking for.

[mamabear]

You make some really fantastic points, Ursa Major! Sure doesn't make much sense at wait until there is that much damage.

Jerseyangel, are you also referring to serological test results? I agree that someone on the challenge wouldn't necessarily have extensive villi damage showing up on a biopsy (or, at least, they wouldn't have non-patchy damage) -- but wouldn't the blood tests following a sufficient challenge show some sort of elevated antibody levels?

Sorry, I'm pretty new to this.

Dr. Green's advice is the current standard of care for gluten challenge. Ursa's point has merit, except diabetes is diagnosed with a fasting blood sugar of 125...period. So it doesn't take eating oneself into a coma to get the gold standard diagnosis for diabetes. It doesn't get that easy with us celiacs, unfortunately. It depends on what kind of diagnosis you want..traditional or outside the box like Dr. Fine? I wish he would get published, because I think he is on to something, but anecdotal reports are not considered proof. And you need more than antigliadin antibodies for a serologic diagnosis in most cases. Ask your doc for endomysial antibody and tissue transglutaminase antibody. You can think of AGA as anti-gluten and EMA and tTG as anti-self. There are biopsy proven incidences of only AGA positive and negative EMA and tTG, but that is also outside the box! I guess the key is to push it until you are comfortable with the diagnostic testing results, then do what makes you feel well.

[rez]

Also, a gluten challenge is looking for the slightest abnormality in pathology, not necessarily totally flattened villi. There are more subtle changes that come before that. You don't need totally flattened villi to be diagnosed with Celiac. Check out the Marsh System.

[lonewolf]

Another thing to think about is that you could be gluten intolerant, but not have Celiac Disease. If this is the case, you'll NEVER have a positive biopsy or blood test, but gluten will still be poisonous to you. Some will argue that only those with true Celiac Disease should avoid gluten, but "anecdotal" evidence proves otherwise.

[mamabear]

Another thing to think about is that you could be gluten intolerant, but not have Celiac Disease. If this is the case, you'll NEVER have a positive biopsy or blood test, but gluten will still be poisonous to you. Some will argue that only those with true Celiac Disease should avoid gluten, but "anecdotal" evidence proves otherwise.

That is why you end up doing what makes you feel well,i.e. a glutenfree diet....but some patients prefer to push the limits of diagnostic testing before they go there. Very reasonable, I think. One of my recent patients with multiple autoimmune conditions had a negative biopsy after a gluten challenge requested by his GI......he felt better all round on the gluten-free diet, and I have encouraged him to go back gluten-free. His diagnostic testing is at a standstill, no need to eat all that stuff that makes him ill. Sometimes anecdotal evidence is all we have for some.

[lonewolf]

That is why you end up doing what makes you feel well,i.e. a glutenfree diet....but some patients prefer to push the limits of diagnostic testing before they go there. Very reasonable, I think. One of my recent patients with multiple autoimmune conditions had a negative biopsy after a gluten challenge requested by his GI......he felt better all round on the gluten-free diet, and I have encouraged him to go back gluten-free. His diagnostic testing is at a standstill, no need to eat all that stuff that makes him ill. Sometimes anecdotal evidence is all we have for some.

You sound like my son's pediatrician. We were in for son's well-child visit and the gluten-free diet came up again. All tests have been negative, but he does SO MUCH better gluten-free. The doc said that tests can't tell us everything and keep up what works.

At some point I think research will show that celiac disease is a very small part of the gluten intolerance problem.