9 replies to this topic

[Seeking2012]

NCGS = non-celiac gluten sensitivity

Ok, so I have been experimenting with what I eat and how I feel afterwards. The other day I ate 2 cups of Post Bran Flakes and I felt absolutely horrible. I became irritable, cranky, fatigued, had a lot of trouble making decisions and concentrating, and just felt "woozy." This effect lasted for 6 hours, with the worst of it occuring about 1-3 hours after eating it. My fiance said my eyes looked puffy as though I had cried but I certainly had not cried. I had not been rubbing my eyes either.

Then I skipped a few days of the bran flakes, but still had some foods containing gluten. I felt better.

And then I had 1 cup of the same cereal this morning and I feel irritable, cranky, fatigued, and have trouble concentrating. I'm also experiencing dry eyes and blurry vision.

It's difficult to know if this effect is being caused by the gluten or the carbohydrates. I have posted a list of my other sympotoms on a diabetes forum (can I reveal which forum this is?) which sound a lot like diabetes but I don't have high blood sugar.

A1C = 5.2% and serum blood glucose 4 hours after a bowl of cereal was 107.

What do you guys think? By the way I have not done any celiac disease or NCGS testing at this point.

[Bubba's Mom]

NCGS = non-celiac gluten sensitivity

Ok, so I have been experimenting with what I eat and how I feel afterwards. The other day I ate 2 cups of Post Bran Flakes and I felt absolutely horrible. I became irritable, cranky, fatigued, had a lot of trouble making decisions and concentrating, and just felt "woozy." This effect lasted for 6 hours, with the worst of it occuring about 1-3 hours after eating it. My fiance said my eyes looked puffy as though I had cried but I certainly had not cried. I had not been rubbing my eyes either.

Then I skipped a few days of the bran flakes, but still had some foods containing gluten. I felt better.

And then I had 1 cup of the same cereal this morning and I feel irritable, cranky, fatigued, and have trouble concentrating. I'm also experiencing dry eyes and blurry vision.

It's difficult to know if this effect is being caused by the gluten or the carbohydrates. I have posted a list of my other sympotoms on a diabetes forum (can I reveal which forum this is?) which sound a lot like diabetes but I don't have high blood sugar.

A1C = 5.2% and serum blood glucose 4 hours after a bowl of cereal was 107.

What do you guys think? By the way I have not done any celiac disease or NCGS testing at this point.

I would ask to be tested for Celiac. Ask for the full panel. Be aware that 20-30% of us test negative though. The best trial is a strict gluten-free diet for at least 60 days.
Until your testing is done continue to eat gluten so you have it in your sytem.

[mushroom]

I would add that the only test available currently for NCGS is improvement on a gluten free diet, since the testing is all designed to test for celiac disease. Scientists are just starting to explore NCGS although those people outnumber celiacs by approximately five to one.

By the way, you may post a link to your post on the other forum

I agree that a full celiac panel would be the place to start.

[Seeking2012]

I have done a lot of testing with my diet and with a blood glucose monitor I recently got to see if I had diabetes or pre-diabetes. It turns out I have very healthy blood sugar levels. A1C=5.2% and fasting is in the mid 80s to low 90s range, and 2-hour postprandials are 105-110.

I feel horrible when I eat a diet high in carbs (over 50g per meal) and I feel much better when I eat a diet low in carbs (less than 50g per day). So maybe it has to do with carbs. But I am going to do the gluten-free testing in a few months to see how that goes for me.

[kareng]

Don't go gluten free until you do the Celiac testing. If you want to be tested. The blood tests test for antibodies. You don't make antibodies if you aren't eating gluten.

[guest134]

Be aware that 20-30% of us test negative though. The best trial is a strict gluten-free diet for at least 60 days.

Are you saying that 20-30 percent of true Celiac patients have false negative tests or are you saying that NCGI simply does not show up on blood tests most of the time?

If you are saying that 20-30 percent of Celiac patients receive false negatives that is absolutely false. In fact, the University of Chicago and Maryland states that false positives are more frequent and likely than false negatives. It is actually 1-2 percent of Celiac patients that will show up as false negatives. The reasoning for that is later explained to be due to 1- IgA deficiency 2- Not currently eating gluten and the most unlikely 3- Just random. Therefore if you had all negative tests while eating a gluten diet and have IgA sufficiency than it is actually very rare to receive a false negative. That being said it is worth trying a biopsy if you really feel it is Celiac.

Improvement on the gluten free diet is in no way an accurate diagnosis of Celiac. Various sample studies have shown that quite a large percentage of the non Celiac population responds well to a gluten free diet. Improvement on a gluten free diet will show NCGI and not necessarily Celiac. Like many foods some people have negative reactions simply because it is not necessarily healthy but there is a difference between that and Celiac. Celiac is a serious autoimmune disease that needs proper diagnosis to establish the associated risks since NCGI can't give you gastric cancer or induce other autoimmune diseases. Big difference between a negative reaction/allergy and having chronic damage and inflammation to the intestines.

I feel absolutely awful when I eat too much sugar, like a big bowl of fruit loops. Is sugar causing my intestines to attack themselves which in turn creates ongoing inflammation and damage that increases risks and complications in other areas? No, it simply is just not good to have in excess. Gluten can be seen as a similar counterpart in which a lot of people would feel better with a diet containing less or no gluten, that does not imply Celiac. So if you had adequate biopsies which returned with negative results as well as the entire Celiac blood panel yet respond to a gluten free diet you have NCGI, not Celiac.


In blood tests, are false positives less common than false negatives?
Even though blood tests are quite accurate, they are falsely positive 1-3% of the time (i.e., being positive without the person having celiac) and, although less commonly, falsely negative 1-2% of the time (i.e., being normal when a person actually has celiac). - http://www.curecelia...false-negatives

[mushroom]

Are we determining that a person has celiac disease by the biopsy when we are talking about false negative blood tests? Because we know that the biopsies can be falsely negative too, depending on the skill of the person performing the endoscopy and a certain degree of luck. A person can test negative on both blood and biopsy and still have celiac disease, unfortunately. I would think only a pill cam would be able to accurately determine if somone actually was negative for the current definition of celiac disease.

[guest134]

I spoke of the importance of a proper biopsy procedure to declare a true non Celiac. Biopsies, like any test can produce false negatives, it is however considered pretty rare and dependent on an incompetent GI which is again rather unusual Only when the GI has not properly cut or produced enough samples would this come in to consideration. The Chicago Celiac center states that - "Multiple tissue samples are vital to an accurate diagnosis. Celiac disease can cause patchy lesions in the duodenum, which can be missed if only 1 or 2 samples are taken. Research shows that when only 2 duodenal biopsies are obtained, diagnosis is confirmed in 90% of cases. However, 3 and 4 biopsies increased detection to 95% and 100%, respectively."

May I ask why you would put so much faith in an antibody test over a biopsy? With antibody blood tests for Celiac you are depending on proper interpretation of a staining pattern. This is done by a lab technician in which in Canada only requires a 1 year College diploma to be qualified for. These staining patterns are similar whether negative or positive, google negative Vs. positive endomysial and you will see how difficult it is to differentiate. Not only that, but they have to dilute it properly which is a whole other act. A GI on the other hand needs close to a decade in medical school and specialization training to be qualified, I would put more trust in them. There are GI's that are out of the loop for Celiac research but that is pretty rare.

The Chicago Celiac Disease center which is often referenced to in high regards on this forum is very much against non biopsy diagnosis:

"Only in rare cases is a diagnosis made without a biopsy as part of the diagnosis. In these rare cases a patient must have at least one of the genes for celiac disease, tTG and EMA elevated more than 10x normal, and a positive response to a gluten-free diet" - http://www.cureceliacdisease.org/archives/faq/will-the-biopsy-continue-to-be-the-gold-standard-for-diagnosis


What’s the problem with diagnosing celiac disease simply by measuring the decrease in antibodies once someone switches to a gluten-free diet?

The con is that you’ll never know if a patient truly has celiac disease versus other causes for elevated antibodies. tTG are thought to be 97-98% specific, but by definition this means that 3 in 100 persons who don’t have celiac disease will have elevated tTG (biological variations, nothing more). If you consider that celiacs are 1% of the general population, it follows that out of 100 persons tested for tTG: 1 has celiac disease and 3 do not. This could mean that only 1 out of 4 of those with positive antibodies will have celiac disease as the cause. This is why you need a biopsy to confirm it. - http://www.curecelia...luten-free-diet

How do you get a doctor to perform a biopsy when the blood test is negative?

"Guidelines may or may not be followed; it all depends on the physician’s judgment in each individual case. Most doctors won’t do a biopsy with a negative test because the test is about 98% accurate. However, by definition, 2% of those with celiac disease do have a negative test, so experienced physicians must handle each case with skill, expertise and balance.
A biopsy may have been helpful in some cases. If discovered that the villi are normal, a patient could be classified as having “non-celiac gluten sensitivity.”' - http://www.curecelia...est-is-negative


Can you confirm celiac disease from only a blood test?

Never, in fact. Other variables must be part of a diagnosis. New guidelines in 2011 allow for diagnosis without a biopsy, but only in very rare cases. In these rare cases at least one of the genes must be present, both tTG and EMA blood tests must be more than 10x normal, and there must be a positive response to a gluten-free diet.
Because the above cases are so rare, the gold standard for diagnosis is still an endoscopic biopsy of the small intestine. - http://www.curecelia...ly-a-blood-test

Does my child really need this procedure?

This procedure is necessary, even for children. It’s the only way to know for sure whether your child has celiac disease. Only in rare, selected cases will your doctor find that the evidence from your child’s history, laboratory tests, and physical examination is enough to finalize the diagnosis without the biopsy. Again, this is only in very rare circumstances and by doctors who have extensive expertise in celiac disease.

[mushroom]

Just so we are clear on this, I am not thrilled with the accuracy of either kind of testing. And I have not had either blood testing or biopsy. So I cannot claim to be celiac. Of course, no one can prove that I am not celiac either. And I believe there are other genes besides DQ2 and DQ8 associated with a celiac diagnosis. I know this is heresy or apostasy in some circles, but there it is. I don't personally put much stock in any of the testing. And the testing would not make any difference whatsoever to my life. By the time I realized gluten was a problem, because none of my brilliant doctors could come to this conclusion, I already had two other autoimmune conditions. Are these because of gluten? I don't know. Chances are that they are.

So I am not being an advocate for either blood testing or biopsy. I am more being the devil's advocate. And I don't think the false negatives are as rare as the statistics you provide; just MHO not based on anything in particular. I look at the studies with these statistics and ask myself, where did they get their cohort sample from? I also note that none of your quoted material makes any mention of the DGP and its role in diagnosis. I don't recall specifically, but I believe it was either 2009 or 2010 that it came into usage.

I am not a black or white person. I have learned to live with shades of grey. I don't believe I would ever say "never". The important thing is to make the patient well, not to establish a name for what they have, in my book. And to not make them even sicker just so you can apply a label to them, if that is what is going to happen. Unfortunately, with the delays in the health systems where some of our posters live (including where I live), it can often take 4-6 months after blood tests before the biopsy is done. Many people, upon discovering that their celiac blood work is positive, are not prepared to continue poisoning themselves for that long to get that the label, and while it is desirable for familial purposes to know if celiac runs in the family, it will probably be established that NCGI is also genetic (these are the implications from Enterolab testing) and if we have family members with symptoms they should get tested and do the diet whether the tests are positive or negative to see if it helps them. And perhaps the U.S. will do some more genetic studies.

[Takala]

Regarding diagnosis, all I can say is "So?" These esteemed, respected medical institutions can blabber all they want about the level of what they claim is their perfection at creating the "perfect" diagnosis, but it is all speculation because the majority of celiacs are still likely undiagnosed, because of the shabby, disjointed, for profit motivated medical system of care we have here in this country. We still, in spite of "reform," don't even bother to provide medical care for about a sixth of our population, which equals about 50 million people. We still throw our mentally disabled out on the streets, along with a lot of war veterans, we have a crisis pending with the rise of allergies, food allergies and intolerances, auto immune diseases, and learning disabilities and incidences of autism, we have a very strong and frightening lobby pretending that all of this is not really happening, and somebody wants to get their knickers in a twist over who gets to actually be called a celiac vs. "just" a gluten intolerant, give me a break. The next thing you know they'll claim hardly anyone is carrying the genes to develop the disease.

If gluten makes you feel physically ill, don't eat it just because somebody said there is no reason for that to happen. That is the height of ignorance.