False Positives?

[reneelt]

We went to the Pediatric GI today for my 3 year old son. His lab results (Celiac Panel) came back with the Glidian IGG and IGA positive while the tTg IGG and IGA and the EMA were negative. He told us the GLidian IGG and IGA were false positives since the tTg was negative. Is this possible? I know that it is common for the tTg to be a false negative...he even admitted it yet told us he was sure that my son did not have Celiac because he was of normal weight and height (25% for weight and 50% for height). Has anybody else been told this?

We are using an antibiotic (Flagyl for 2 weeks) and then we return to him in 3 months for a follow up. We are also supposed to put him back on milk even though we are confident that he is lactose intolerant. This doctor does not feel he is. He says 1 year olds (when my son was dx with lactose intolerance) don't typically show they are lactose intolerance even though my son puked within 30 minutes of getting milk and would leave puddles of diarrhea on the floor for 2 weeks.

I am lost and don't know where to turn now. I just want answers and feel like I am getting nowhere. Of course to add to all this my son's pediatric GI is in a fellowship and is leaving so we will have a new one come time for our next appointment and this doctor will probably have a totally different opinion and treatment plan. Sorry some of this is a vent...but I would like your thoughts on the false positives.

[QueenOfPain]

Hi there, I'm certainly not an expert on any of this. I hadn't even heard of Celiac until about a year ago. However, I too tested negative for my TTG levels, but tested postive for an increased level of Antigliadin IGA antibodies. My doctor's office also said that this could be a false positive--that my body could be reacting to something else. (I have no idea what that something else could have been, though.)

They proceeded to give me an endoscopy and colonoscopy, but the biopsies came back negative. I then decided to just try the gluten-free diet. I informed my doctor of this and she agreed that it would be a good idea (even though she had previously stated that she was "very confident I did not have Celiac" after the biopsies.) She said that I should take the Celiac panel blood test again after being on a strict gluten-free diet for several months. If the Antigliadin IGA antibodies came back negative it would prove that my body was in fact reacting to the gluten, and would support a Celiac diagnosis. So, I proceeded with the diet and the retest, and guess what. I was reacting to the gluten!

So you may want to keep that in mind. I know it may be hard to switch your little guy to a strict gluten-free diet, but it may be worth it so you can at least rule the disease in or out. It was very tough for me, especially since I went through gluten withdrawal for the first couple of months. My gastro symptoms actually got worse after I first started the diet. But after about 3 months I started feeling so much better. But then again I suffered with this disease for 19 years thinking it was just IBS. Sorry for the novel, but I hope you found this helpful. Good luck! I hope your son gets to feeling better real soon!

[Gemini]

We went to the Pediatric GI today for my 3 year old son. His lab results (Celiac Panel) came back with the Glidian IGG and IGA positive while the tTg IGG and IGA and the EMA were negative. He told us the GLidian IGG and IGA were false positives since the tTg was negative. Is this possible? I know that it is common for the tTg to be a false negative...he even admitted it yet told us he was sure that my son did not have Celiac because he was of normal weight and height (25% for weight and 50% for height). Has anybody else been told this?

We are using an antibiotic (Flagyl for 2 weeks) and then we return to him in 3 months for a follow up. We are also supposed to put him back on milk even though we are confident that he is lactose intolerant. This doctor does not feel he is. He says 1 year olds (when my son was dx with lactose intolerance) don't typically show they are lactose intolerance even though my son puked within 30 minutes of getting milk and would leave puddles of diarrhea on the floor for 2 weeks.

I am lost and don't know where to turn now. I just want answers and feel like I am getting nowhere. Of course to add to all this my son's pediatric GI is in a fellowship and is leaving so we will have a new one come time for our next appointment and this doctor will probably have a totally different opinion and treatment plan. Sorry some of this is a vent...but I would like your thoughts on the false positives.

What this testing most likely shows is that your son is reacting to gluten, in the early stages of possible Celiac. He is probably too young to have accrued much intestinal damage so his tTg would be negative. Ditto for the EMA. It could take a person years for damage to show in blood work. The elevated IgG and IgA correspond to reaction to ingested gluten only.

I have never heard of a false positive, just a false negative which can be fairly common. Doctor's see in black and white only....whatever the test says even though there are grey area's there. Namely the elevated antibody test. Celiacs know to look in those grey area's.

That, coupled with lactose intolerance or possible intolerance to casein (the protein in milk) are pointing towards Celiac. His height and weight are not abnormal because he could have triggered recently and it takes awhile for growth to be affected. Really, what do these people not understand?

You have a choice here. Try a trial gluten-free diet on him and see what happens or keep bouncing from doctor to doctor hoping to find one who gets it. Puddles of diarrhea are never normal in anyone. You will know soon enough if gluten is a problem. Gluten free, dairy free and I bet your son will improve. Trust your instincts because you seem to know already. Good luck and I hope the little guy feels better!

[gfb1]

What this testing most likely shows is that your son is reacting to gluten, in the early stages of possible Celiac. He is probably too young to have accrued much intestinal damage so his tTg would be negative. Ditto for the EMA. It could take a person years for damage to show in blood work. The elevated IgG and IgA correspond to reaction to ingested gluten only.

I have never heard of a false positive, just a false negative which can be fairly common. Doctor's see in black and white only....whatever the test says even though there are grey area's there. Namely the elevated antibody test. Celiacs know to look in those grey area's.

That, coupled with lactose intolerance or possible intolerance to casein (the protein in milk) are pointing towards Celiac. His height and weight are not abnormal because he could have triggered recently and it takes awhile for growth to be affected. Really, what do these people not understand?

[snip]

this is a great answer.

in any analytical test, there are both false negatives AND false positives, though they occur at different rates -- and probability theory is never easy on anyone... However, in any clinical test -- if a false positive is suspected the recommended course of action is to REPEAT THE TEST. having said that, gemini's response is on the money. gliadin should NOT be in the blood and, somehow, it is getting there.

as far as height/weight go -- the reduction in ht/wt due to celiac disease is based on percentage of nutrient intake. in cultures where intake is minimal, ht/wt declines under celiac disease. in 'developed' countries, even the most nutrition conscious are overconsuming everything, so ht/wt is less likely to be affected.

our daughter had similar reactions to cow's milk (not mothers', goat or sheep), and it turned out to be an allergic reaction to bovine casein. i could dip my finger in 'cool whip' (which is mostly casein) and write on her skin, resulting in fierce red welts (but, i only did it at parties).

the good news is that she outgrew it, and currently enjoys large volumes of penn.state creamery ice cream on a regular basis. hope your guy is as lucky!

[nora-n]

Hi, there was a thread somewhere recently (about a month or two ago) here or on the delphi celiac forum about a similar situation.

Some people answered with citations aod pubmed references that cliarly say that in children up to 3 , the antigliadin tests, both IgA and especially IgG are more accurate thatn the ttg tests.

That is because the imune sstem in small children is not so developed yet.

I did not bookmark them back then, sorry.

It is very common for celiacs to not tolerate milk and lactose. I personally also have problems with the casein. The lactose intolerance is supposed to go away after some months off gluten.

I am in Europe, and here we advocate to get a biopsy anyway. They also took a biopsy with me to test for the lactase enzyme on a biopsy sample, they can do that at the same time. I did have lactase activity, and that means something else is going on, like celiac or anything else.

nora

[Takala]

I don't know what country or what sort of medical system or insurance you are having to cope with, nor how much experience this idiotic doctor has with diagnosing gluten intolerance and / or celiac.

I am appalled that he is ignoring a previous diagnosis of lactose intolerance. If a parent feeds the child dairy with lactose and the child gets sick afterwards, what is observed as a symptom takes precedence over his opinion. There is no such thing as a child "too young" to have an allergy or intolerance, unless they were just hatched out of the womb and haven't ingested the culprit twice .

The second thing is that the lactose (milk sugar), casein (milk protein) intolerances goes hand in hand with gluten intolerance as a symptom of being gluten intolerant. Some gluten intolerant people who are also dairy intolerant may regain the ability to be able to eat lactose free dairy products such as hard cheeses or safe gluten-free yogurt once on a gluten free diet and their gut lining heals.

So now we have 2 symptoms, runny poo and lactose intolerance.

On the tests, from what I am reading now around the web, the celiac blood panels consist of 4 tests,

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

But the doctors are tending to disregard having the antibodies to gliadin, and are not wanting to do a biopsy unless the tissue transglutimase tTG shows a strong reaction.

Then they claim that one cannot obtain an "official diagnosis of celiac" without both the positives on the blood test AND damage showing on the biopsy.

Open Original Shared Link

The current diagnostic tests for celiac disease are very accurate, particularly when tTG and anti-endomysial antibodies are elevated. The isolated presence of anti-gliadin antibodies does not necessarily imply that the subject is affected by celiac disease, with the exception of children under the age 2 in which tTG and EMA may not be present.

Whoops.

Indeed, I just pulled up a pdf file link from the Univ. of Chicago Open Original Shared Link. written a few years ago which says that the antigliadin test was "obsolete" due to its lack of sensitivity, and that they wanted to see the EMA anti endomysial antibody test and the tTG anti tissue transglutimase tests show high enough levels and THEN a biopsy should be done- and then, only IF the biopsy shows damage will the "gold standard" of a diagnosis of celiac be given.

Gee, I wonder why this disease is so hard to diagnose. Could it be a large number of patients just can't get past the first round of bloodwork ?

I found your old post from April 15 about the bloodwork test for your 3 year old, showing the 2 positive tests for gliadin antibodies :

Ttg IGA <3 U/mL

<5 Negative

5-8 Equivocal

>8 Positive

Gliadin Antibody IGA 25 (High) u/mL

<11 Negative

11-17 Equivocal

>17 Positive

Gliadin Antibody IGG >100 (High) U/mL

<11 Negative

11-17 Equivocal

>17 Positive

Ttg IGG <3 U/mL

<7 Negative

7-10 Equivocal

>10 Positive

Immunogloblin A Endomysial Antibody SCR 95 Range is 24-121mg/dL

(IGA) W/Refl to Titer Negative

Here is another website from Columbia University Medical Center, while it's written more wonky in technical terms, it does have a lot of good information:

Open Original Shared Link

Seronegative (no positive blood work) Celiac Disease

Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative. In addition the mode of presentation of the celiac disease, i.e. presence of silent or subclinical celiac disease may be associated with a negative EMA [30]. Clinically seronegative celiac disease is similar to sero-positive celiac disease [23, 28] In view of the possibility of the presence of celiac disease in the absence of a positive anti-tTG or endomysial antibody the presence of a positive IgA AGA should prompt a biopsy [13]. Several studies have demonstrated that reliance on either anti-tTG or endomysial antibody as a single test will underestimate the prevalence of celiac disease [23, 25, 31, 32].

they have some other good FAQ pages to read:

Open Original Shared Link

Open Original Shared Link

They repeat the belief that Celiac is woefully undiagnosed as it is thought to be as high as 1 in 133 people have it, and it takes about 11 years on the average to be diagnosed.

This site is also saying that if Celiac is suspected, it is important to have the patient stay on gluten until a positive diagnosis is made, so the blood tests will show a reaction and the gut biopsy will show damage.... it doesn't say if the patient is supposed to go on 11 years with symptoms before they develop enough damage to reach the "gold standard" .

They also talk about genetic testing (this, btw, can be done over the counter mail order by different companies, you can do a search on this site for discussions on that.) The most common genes are the HLA DQ 2 and HLA DQ 8, carried by about 30% of the population, altho there are others. Having the genes doesn't mean you automatically get gluten intolerance or celiac, but it means you are capable of getting it if you are triggered by a stress such as an infection, and it is another piece of the puzzle which may show an increased likelihood of the symptoms being caused by gluten intolerance. Both these genes are associated with your ancestors being from certain parts of the world, and both are associated with having a higher risk of developing autoimmune disease.

wikipedia article on HLA DQ2 , DQ8 (warning, high wonkiness language)

Open Original Shared Link

Open Original Shared Link (very cool anthropology discussion here on where it may have originated and spread, based on these newer human genome studies)

_____________________

Now, to get back to your original question:

"I'm lost and I just want answers....

Well, you may eventually find answers but it's not going to be from the pediatrician's office. You are faced with 2 choices here, you can put him back on a regular diet and see what happens, and continue to try to get the medical community to test at the right time to show more results that they might then be able to get past a bean counter in the insurance dept., (I'm assuming you're American) or you can do a process of elimination diet and take him off of foods that you notice are giving him bad reactions, and make the reactions go away, but you may not get the doctor approved, "gold standard" official diagnosis without the biopsy. You can also do the gene testing, if you are curious, esp. if you've read the links and noticed you have the appropriate ancestor origins from Ireland, Spain, Italy, Scandinavia, Central America, Northern Africa.... it may convince a doctor in the future to take your concerns more seriously.

For me, if the kid was getting sick on milk, that would be a no- brainer to at least take him off the milk and keep him off, and I think I would have been really annoyed with the attitude of anybody telling me otherwise. If his digestion and behavior improves dramatically while off of gluten, that would be more motivation to change his diet even if you fail at getting medical confirmation.

[reneelt]

Thank you for the responses, I appreciate all of them. I just wish this doctor would have listened to me better and heard me out completely.

Takala~ thank you so much for all the links and finding his actual blood work results. I can't say thank you enough. Your response was great. We are in Michigan, US and are going to the University of Michigan hospital. We thought it would be a good experience but learned fast that it wasn't. We go back in 3 months and are getting a new doctor. I can't wait to read all the links and information.