Other Ways To Determine Celiac Diagnosis For Those Who Have Been Gluten-Free?

[spirit-walk]

Anyone know if there are other ways to diagnose someone as Celiac besides going through weeks of eating a gluten-diet?

 

Are they making any breakthroughs regarding alternative testing?

 

I have many Celiac-type symptoms, but I just don't think I can go back to eating gluten. However, I still share a kitchen with my family who eat gluten. 

[KCG91]

I have a positive blood test for Coeliac but didn't want to keep eating it for three months while I waited for a biopsy...and now I can't face the thought of a challenge either! As well as having my antibody levels checked to see if being gluten-free has made a difference I'll be having a genetic test for Coeliac, which might give you a bit more to go on? 

[nvsmom]

Biopsies often require a shorter gluten challenge; It's more along the lines of 2-4 weeks rather than 2-3 months.... But it would be a loooong 2-4 weeks I'm sure.

 

I don't know of any testing that does not include consuming gluten.  

 

Sometimes antibody levels stay high for a while. The tTG IgA is one of the last to come down; that one can take weeks to months to over a year to get back to normal. It could be worth checking.

[IrishHeart]

 

 

Are they making any breakthroughs regarding alternative testing?

 

 

I am afraid not, hon.

 

The presence of elevated antibodies and/or a positive biopsy are still considered the diagnostic protocol along with remission of symptoms on a gluten free diet. A gene test is another factor to consider, but it is not considered predictive, definitive or diagnostic.

[gary'sgirl]

Some people have used Enterolab to verify that they had a gluten sensitivity, and this is done with a stool sample. If I remember right, they can pick up antibodies in the stool for six months - maybe more - after going gluten free.

 

This however is not an official diagnoses, and maybe others that know more about it can chime in, but at least it verifies for you whether or not gluten was indeed the problem (or a part of it).

 

I believe that some people on this board have been tested by enterolab and brought the results to their doctor and the doctor then gave them a diagnoses, though maybe just for gluten intolerance as opposed to Celiac Disease. I can't remember for certain though.

 

I haven't read much about enterolab for a while, so maybe some others on this site can give better info about it as far as it's legitimacy.

Might be worth checking into though. I know that I wouldn't want to go back on gluten just for testing either - hard to fell like it's worth it, but everybody's situation is different.

Hope you can quickly figure out what's best for you.

[kareng]

Currently, there doesn't seem to be a good test for celiac without eating gluten. Blood tests look for antibodies. antibodies are made in response to gluten - so - no gluten, no antibodies. The endoscopic biopsy looks for damage but, hopefully, on a gluten-free diet, that damage has healed.

As research continues, I would guess that blood tests would get better. Perhaps even be able to detect a response after only a few days of gluten?

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[spirit-walk]

Thanks for the responses.

[IrishHeart]

Some people have used Enterolab to verify that they had a gluten sensitivity, and this is done with a stool sample.

 

I haven't read much about enterolab for a while, so maybe some others on this site can give better info about it as far as it's legitimacy.

 

 

Hi GG! 

 

"Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what has been published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease."

 

There's more info on Enterolab at the link Karen provided.

 

I wish there were better ways for people to find out if gluten is a problem without spending money on tests that may or may not reveal anything, but I know the researchers are working on it!

 

Hope they hurry. Too many people are sick and they want answers.  

[kellysensei]

I was off gluten for seven weeks; now I've been back on for about a week. Unless my recent blood tests come back positive (doubtful), I plan on ordering the Enterolab stool test within a week or two. I don't think they distinguish between gluten sensitivity and full-blown Celiac disease, though, so it may not be right for some people. But it seems valid enough for me.

[gary'sgirl]

Kareng and IrishHeart,

 

Thanks for the responses about the validity of enterolab.

 

I'm interested to read about it more, because I have had a couple of doctors say that they thought the tests were legitimate, but several others that hadn't heard of it and thought it was just a money making scheme.

 

It would be so nice if it was a legitimate test, though. It would definitely help a lot of people figure stuff out with out so much suffering in the process.

 

I'm with you IrishHeart - I hope they figure out some more accurate and less invasive tests soon.

[IrishHeart]

I was off gluten for seven weeks; now I've been back on for about a week. Unless my recent blood tests come back positive (doubtful), I plan on ordering the Enterolab stool test within a week or two. I don't think they distinguish between gluten sensitivity and full-blown Celiac disease, though, so it may not be right for some people. But it seems valid enough for me.

 

I guess I am perplexed then why you would bother, hon. If they do not distinguish between NCGS and celiac, what do you think they will tell you?

 

There are no valid tests for NCGS yet. 

 

It's your call, of course, but I can't see spending a lot of money on something that does not diagnose a thing.

 

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Currently, there are no recommended methods to test for non-celiac gluten sensitivity. Some doctors offer saliva, blood or stool testing. However, these tests have not been validated and are therefore not accepted.  

In NFCA’s webcast, Dr. Guandalini states: “As a matter of fact, right now, they are to say that there is absolutely no biological readout that is no way can this diagnosis can be supported by any laboratory investigation. No antibodies in the blood are specific enough, or sensitive enough, for this condition. No antibodies in the stools can be utilized to diagnose or screen for this condition.”

Dr. Fasano also touched on this topic and stated that his team is currently conducting research to identify biomarkers that may help to test for and diagnose non-celiac gluten sensitivity:“…as Dr. Guandalini explained when the only way to make a diagnosis of gluten sensitivity is by exclusionary criteria since we do not have tests that will point in that direction. And that’s where our current efforts are all about. Now that we understand that it is a different entity we want to make sure that we can eventually identify the biomarkers for this condition, and we’re doing a double blind study to identify the biomarkers that will eventually fill the gap that Dr. Guandalini was alluding to.”

[IrishHeart]

"Salivary antibodies to gliadin lack sensitivity and specificity for celiac disease. Blood tests that determine the presence of IgE to gliadin are also not useful in diagnosing celiac disease. Skin testing of intradermal gliadin is relatively insensitive and can be painful. Rectal challenge with gliadin does produce a measurable change in the numbers of intraepithelial T lymphocytes in untreated celiac disease and could serve a surrogate test for diagnosing gluten sensitivity, but as currently performed does not help to diagnose celiac disease in patients already consuming gluten-free diets."

 

Here is another article you guys can read, if you wish. 

 

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[VJCAREY]

For what it's worth, my gastro doc ordered numerous stool tests (3 vials of the stuff I had to provide) after I tested pos. for one of the celiac genes (DQ2?  not 8, just the 2)  My blood antibodies were normal but I was hardly eating any gluten prior to the blood draw.  Just a few crackers now and then.  So, for several days before the stool sample I ate pasta salad and then organic whole wheat spagetti, and even forced down a few cookies.  Well, I have been miserable since then (the last 5 days) but I got a stool sample over to the lab yesterday.  She had 3 different test codes written down on the paperwork, each of which seemed to include "allergan" tests and lots of other stuff.  My upper and lower scopes (with biopsy for celiac) are scheduled for early June.  SO, DOES THIS MEAN I MUST KEEP EATING WHEAT UNTIL THEN? 

[kareng]

You should be eating gluten to be tested for Celiac - blood tests or endoscopy. Stool tests cannot tell you if you have Celiac.

The only mention of stool testing is the ones for non- Celiac gluten sensitivity because there aren't any for Celiac at this time.

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"Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?

We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support."

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"A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

Prior to blood testing we recommend 12 weeks of eating gluten.

Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten."

[VJCAREY]

Thank you, kareng.   Wish I had known all that before my blood test.  I tried to be gluten-free most of the winter but realized that gravy, sauces etc had gluten in them.  Before the blood draw I had gluten only about once per week for 3 weeks.  Sounds like it was not enough.  I know my doc is testing to rule out Crohns, IBD, parasites, etc. too.  My biopsy is June 1 so I will be sure to eat gluten every day til then (Ugh.)  A bagel or an English Muffin.  A few crackers before bedtime.  Regardless of what the biopsy says, (and it was time for me to be scoped, top and bottom, anyway) I am going gluten-free.  This afternoon I was starting to feel a little better.  Then after a healthy supper I had 3 small wheat crackers and 3 spoonsful of a multi-grain (w/wheat) cereal.  The sharp cramping is back.  It's going to be a long 3 weeks!

[StClair]

I was diagnosed with a very positive genetic test, plus symptoms, after the doctor doing my endoscopy failed to biopsy for celiac (grrrr).