Son's Results--should We Trust Them?

[RoseRobin]

My 16 year old son has been suffering from chronic sinus issues/ congestion/ drip for almost 3 years. Allergy testing and GERD testing have turned out negative. He believes that the symptoms worsen when he eats gluten, so began cutting it out of his diet a few months ago, though not absolutely (ie, he would have a couple of meals a week that included some gluten products, such as meatballs with wheat crumbs or chicken enchiladas with whole-grain tortillas, and probably ingested small amounts of "hidden" gluten). It was only recently that I heard of celiac antibody blood tests, and we saw an immunologist who does not think my son is celiac, but agreed to send him for the tests, as well as to test for iron anemia (re malabsorption). My son went back to eating more gluten for two weeks before the test. We received the results that everything was negative--but we're uncertain whether or not to accept the results. How can we be sure that he was ingesting enough gluten for long enough before the test? After searching the internet, I've found various sources that say one has to be back on the equivalent of four slices of gluten bread a day for 3 months before testing. Will my son's "semi-gluten-free" diet for several months invalidate the tests? Was two weeks of "some" gluten enough or not? Since the test, he has much more stringently cut gluten (and dairy) out of his diet in hopes that his sinus issues will clear up, but hasn't seen real improvement yet. BTW, the sinus issues are his only noticeable symptoms, besides occasional heartburn from certain foods (not necessarily gluten). Should we try to get the genetic and stool tesintg done (though I'm not sure if we can do this in Canada). Any thoughts? Thank you.

[Gfresh404]

My 16 year old son has been suffering from chronic sinus issues/ congestion/ drip for almost 3 years. Allergy testing and GERD testing have turned out negative. He believes that the symptoms worsen when he eats gluten, so began cutting it out of his diet a few months ago, though not absolutely (ie, he would have a couple of meals a week that included some gluten products, such as meatballs with wheat crumbs or chicken enchiladas with whole-grain tortillas, and probably ingested small amounts of "hidden" gluten). It was only recently that I heard of celiac antibody blood tests, and we saw an immunologist who does not think my son is celiac, but agreed to send him for the tests, as well as to test for iron anemia (re malabsorption). My son went back to eating more gluten for two weeks before the test. We received the results that everything was negative--but we're uncertain whether or not to accept the results. How can we be sure that he was ingesting enough gluten for long enough before the test? After searching the internet, I've found various sources that say one has to be back on the equivalent of four slices of gluten bread a day for 3 months before testing. Will my son's "semi-gluten-free" diet for several months invalidate the tests? Was two weeks of "some" gluten enough or not? Since the test, he has much more stringently cut gluten (and dairy) out of his diet in hopes that his sinus issues will clear up, but hasn't seen real improvement yet. BTW, the sinus issues are his only noticeable symptoms, besides occasional heartburn from certain foods (not necessarily gluten). Should we try to get the genetic and stool tesintg done (though I'm not sure if we can do this in Canada). Any thoughts? Thank you.

It is really hard to say how long you have to be on a gluten-free diet before the results get skewed. My GI told me about 6 weeks, which sounds about right. I would not say that two weeks enough to alter the results of the tests, a lot of people's antibodies levels take much longer than that to go down, but then again people with gluten sensitivity do not have elevated antibody levels in the blood. I would hold off on the genetic and stool testing, save your money, unless of course you can get it covered by insurance which is very possible. Honestly, the most reliable test is the one you perform yourself. Continue on the gluten free/dairy free diet for about 3-4 more weeks, if you do not see any improvements, you can rule out Celiac Disease/Gluten Sensitivity. I do not hold much stock in the Celiac antibody tests, those are notorious for producing false negatives and do not appear to even show up positive on people with gluten sensitivity. I myself tested negative for Celiac on not only the antibody test, but the genetic test as well. We really just don't know enough about these conditions yet, the studies/research simply hasn't been done yet. The problem is that doctors only diagnose Celiac when there is physical damage to the small intestine, it is only now that researchers are starting to see that gluten sensitivity (whatever you want to call it) starts attacking other major organs and parts of the body first before ever even getting to the small intestine. So just because those tests were negative, that doesn't mean your son isn't gluten intolerant. The stool tests are much more reliable, but the majority of people only use them as confirmation when they have responded well to a gluten free diet and have tested negative for Celiac. So, I would say continue with the diet and if you do not see improvement in 3-4 weeks, you can be pretty sure gluten is not to blame. I actually noticed improvements in just a couple of days but everyone is different so you never know. Let me know if you have any other questions or concerns.

p.s. my Aunt had a very annoying post nasal drip and she turned out to be Celiac, so it very well could be a symptom.

[RiceGuy]

It took about six months of 100% gluten-free before I noticed any real difference at all. 100% compliance with the diet is required in order to see results. So if your son has "just a little" gluten here and there, I doubt he'd really get much noticeable improvement.

And you're correct - two weeks of consuming gluten before the tests is simply not enough.

[RoseRobin]

It took about six months of 100% gluten-free before I noticed any real difference at all. 100% compliance with the diet is required in order to see results. So if your son has "just a little" gluten here and there, I doubt he'd really get much noticeable improvement.

And you're correct - two weeks of consuming gluten before the tests is simply not enough.

So that is not very discouraging--I had been so hopeful,a nd so was my son. There is no way is going to go back to eating a gluten filled diet for 6 weeks just to be tested again and perhaps still have negative results. Why this concerns me so much is the possibility that he may have intestinal damage and we would not know how serious it is; and also that, if he is celiac,then the rest of the family might be "silent" celiacs too. Where does it stop regarding testing /finding out for the rest of the family?

[RoseRobin]

It is really hard to say how long you have to be on a gluten-free diet before the results get skewed. My GI told me about 6 weeks, which sounds about right. I would not say that two weeks enough to alter the results of the tests, a lot of people's antibodies levels take much longer than that to go down, but then again people with gluten sensitivity do not have elevated antibody levels in the blood. I would hold off on the genetic and stool testing, save your money, unless of course you can get it covered by insurance which is very possible. Honestly, the most reliable test is the one you perform yourself. Continue on the gluten free/dairy free diet for about 3-4 more weeks, if you do not see any improvements, you can rule out Celiac Disease/Gluten Sensitivity. I do not hold much stock in the Celiac antibody tests, those are notorious for producing false negatives and do not appear to even show up positive on people with gluten sensitivity. I myself tested negative for Celiac on not only the antibody test, but the genetic test as well. We really just don't know enough about these conditions yet, the studies/research simply hasn't been done yet. The problem is that doctors only diagnose Celiac when there is physical damage to the small intestine, it is only now that researchers are starting to see that gluten sensitivity (whatever you want to call it) starts attacking other major organs and parts of the body first before ever even getting to the small intestine. So just because those tests were negative, that doesn't mean your son isn't gluten intolerant. The stool tests are much more reliable, but the majority of people only use them as confirmation when they have responded well to a gluten free diet and have tested negative for Celiac. So, I would say continue with the diet and if you do not see improvement in 3-4 weeks, you can be pretty sure gluten is not to blame. I actually noticed improvements in just a couple of days but everyone is different so you never know. Let me know if you have any other questions or concerns.

p.s. my Aunt had a very annoying post nasal drip and she turned out to be Celiac, so it very well could be a symptom.

I'm still not really clear-- are you saying that the period during which my son ate "some" gluten would "count" towards the time in preparing for the antibody test, or that only the two weeks when he ate more gluten would "count", and that that was not enough time?

Did your aunt have other symptoms as well, or only the post-nasal drip? Was that what prompted her to seek a diagnosis?

[Gfresh404]

I'm still not really clear-- are you saying that the period during which my son ate "some" gluten would "count" towards the time in preparing for the antibody test, or that only the two weeks when he ate more gluten would "count", and that that was not enough time?

Did your aunt have other symptoms as well, or only the post-nasal drip? Was that what prompted her to seek a diagnosis?

SOME gluten would NOT matter, it would have to be a lot.

Two weeks is not enough time to alter the results of the antibody test.

[GottaSki]

My 15 and a half year old son has these same symptoms and has for about three years...docs have treated like asthma (never seemed like asthma to me) and then gerd...his celiac panel is still out being tested as I was diagnosed just a month ago.

He is currently still eating some gluten, although our home is quickly turning gluten-free for all instead of just me.

Just 2 months ago we had never heard of Celiac or understood what a Gluten intolerance even was....we are learning quickly.

I'll update you once we receive his blood tests...although I suspect his tests will come back only slightly indicating celiac...as my tests as well as my oldest daughter's both came back only slightly elevated. We'll decide on the next step soon.

Good luck to you and your son.

[JW88]

I, too, had sinus issues for years and could not figure out why. Here are a few suggestions to look into, as they have helped me:

1) Obviously, gluten. You can't just go "sort of" off it. You're either off it or you're not. When I went gluten-free, it took weeks to completely clear my body. I had drainage out of every orifice as my body released the toxins and inflammation. Now, when I get glutened, even if it's just a tiny crumb, I feel it! Bad! Make sure you watch out for hidden gluten -- coz if you're still eating the hidden gluten, you're not gluten-free. I noticed sinus improvement after going gluten-free, and I could swear my nose actually got smaller. Weird, I know, but true. It's like my nose wasn't "swollen," anymore.

2) Hiatal hernia. I recently started getting treated holistically for a hiatal hernia (you need to do some Internet research on this to truly understand it). My chiropractor uses a kinesiologic maneuver to treat it (takes about 1-2 minutes), and I've noticed a big improvement in my overall health, included sinuses.

3) TMJ disorder. HOLY MOLY, BATMAN! You wouldn't believe how TMJ disorder can affect your entire body (much like a hiatal hernia can). You'll need to go to a dentist/orthodontist who specializes in the diagnosis and treatment of TMJ (again, a very specific Internet search can give you an option or two in your area), but if your son has TMJ disorder and begins getting treatment, he'll notice all kinds of health improvements, including those with his sinuses.

4) Nasal polyps. Years ago, I had such terrible sinus problems that I actually couldn't breathe at all through my nose. And I had this terrible dripping. Doctor after doctor, and medication after medication, failed to diagnose or help the problem. Then I went to an ENT and he took one look up my nose and say, "Oh, you have polyps," as if it was the most elementary diagnosis ever and that anyone who couldn't tell I had polyps was blind as a bat. The polyps had grown so large that they completely blocked my nasal passages. I had surgery to remove the polyps, and can breathe through my nose again.

Am I 100% cured of all sinus problems? No. But am I happier with my sinus functionality? Heck, yes! Unfortunately, our medical system in this country operates with such tunnel vision and what I would consider a bit of corruption, patients practically have to self-diagnose themselves and tell doctors what to look for to get proper treatment. A psychic had to tell me about the TMJ and hiatal hernia, because my doctors couldn't find anything wrong with me, even after running a kazillion tests. In hindsight, the symptoms were so unbelievably obvious that it's frustrating that they never suggested it and instead made me keep spending my time and money on unnecessary tests and medication. I have lost all faith in our country's medical system and think twice (and even three times) before doing anything my doctor suggests. Seek answers in more unconventional ways and you have a better chance of getting them.

[RoseRobin]

My 15 and a half year old son has these same symptoms and has for about three years...docs have treated like asthma (never seemed like asthma to me) and then gerd...his celiac panel is still out being tested as I was diagnosed just a month ago.

He is currently still eating some gluten, although our home is quickly turning gluten-free for all instead of just me.

Just 2 months ago we had never heard of Celiac or understood what a Gluten intolerance even was....we are learning quickly.

I'll update you once we receive his blood tests...although I suspect his tests will come back only slightly indicating celiac...as my tests as well as my oldest daughter's both came back only slightly elevated. We'll decide on the next step soon.

Good luck to you and your son.

Thanks for replying. May I ask what made you get tested yourself for celiac, and why you then had your son tested? Was that because you were positive? By "these same symptoms," do you mean the post nasal drip and congestion?

[RoseRobin]

I, too, had sinus issues for years and could not figure out why. Here are a few suggestions to look into, as they have helped me:

1) Obviously, gluten. You can't just go "sort of" off it. You're either off it or you're not. When I went gluten-free, it took weeks to completely clear my body. I had drainage out of every orifice as my body released the toxins and inflammation. Now, when I get glutened, even if it's just a tiny crumb, I feel it! Bad! Make sure you watch out for hidden gluten -- coz if you're still eating the hidden gluten, you're not gluten-free. I noticed sinus improvement after going gluten-free, and I could swear my nose actually got smaller. Weird, I know, but true. It's like my nose wasn't "swollen," anymore.

2) Hiatal hernia. I recently started getting treated holistically for a hiatal hernia (you need to do some Internet research on this to truly understand it). My chiropractor uses a kinesiologic maneuver to treat it (takes about 1-2 minutes), and I've noticed a big improvement in my overall health, included sinuses.

3) TMJ disorder. HOLY MOLY, BATMAN! You wouldn't believe how TMJ disorder can affect your entire body (much like a hiatal hernia can). You'll need to go to a dentist/orthodontist who specializes in the diagnosis and treatment of TMJ (again, a very specific Internet search can give you an option or two in your area), but if your son has TMJ disorder and begins getting treatment, he'll notice all kinds of health improvements, including those with his sinuses.

4) Nasal polyps. Years ago, I had such terrible sinus problems that I actually couldn't breathe at all through my nose. And I had this terrible dripping. Doctor after doctor, and medication after medication, failed to diagnose or help the problem. Then I went to an ENT and he took one look up my nose and say, "Oh, you have polyps," as if it was the most elementary diagnosis ever and that anyone who couldn't tell I had polyps was blind as a bat. The polyps had grown so large that they completely blocked my nasal passages. I had surgery to remove the polyps, and can breathe through my nose again.

Am I 100% cured of all sinus problems? No. But am I happier with my sinus functionality? Heck, yes! Unfortunately, our medical system in this country operates with such tunnel vision and what I would consider a bit of corruption, patients practically have to self-diagnose themselves and tell doctors what to look for to get proper treatment. A psychic had to tell me about the TMJ and hiatal hernia, because my doctors couldn't find anything wrong with me, even after running a kazillion tests. In hindsight, the symptoms were so unbelievably obvious that it's frustrating that they never suggested it and instead made me keep spending my time and money on unnecessary tests and medication. I have lost all faith in our country's medical system and think twice (and even three times) before doing anything my doctor suggests. Seek answers in more unconventional ways and you have a better chance of getting them.

My son had a CT scan which showed one polyp in a rear sinus, but the doctors say this would not cause his post-nasal drip. Why not?

Also, I'm still confused on the gluten issue: it sounds as though even a tiny amount can cause symptoms if one is intolerant/ celaic BUT you have to eat a LARGE amount for weeks for the antibodies to show up on the test? Is that right?

[GottaSki]

Thanks for replying. May I ask what made you get tested yourself for celiac, and why you then had your son tested? Was that because you were positive? By "these same symptoms," do you mean the post nasal drip and congestion?

Of course you may ask.

I was tested for celiac because i have been very sick for about a year. Unexplained bloating, extreme heat intolerance and a host of other conditions -- not many sinus issues over the years. Anyway...the celiac blood test in early March was about my 50th blood test in a year and the only one that came back indicating a problem. I then went to a celiac gi doc who performed biopsy. My blood tests only marginally indicated celiac, but the endo confirmed moderate/heavy damage from celiac. After diagnosis we've looked back over my health history and believe I've been celiac all of my nearly 44 years. SO now my children and grandchild are being tested as they have each had different autoimmune type health problems. Oldest was diagnosed with lupus at 13. Middle son, the one I mentioned early is very healthy EXCEPT for the ongoing sinus/congestion problem with some unexplained flu type (no fever) illnesses over the years. Youngest son was sick for nearly a year two years ago...we ran alot of rhuematology on him because of the sister with lupus...nothing was ever found.

Happy to answer anything as this site has been very helpful to me as we learn what we need to do to stay healthy.

[RoseRobin]

Of course you may ask.

I was tested for celiac because i have been very sick for about a year. Unexplained bloating, extreme heat intolerance and a host of other conditions -- not many sinus issues over the years. Anyway...the celiac blood test in early March was about my 50th blood test in a year and the only one that came back indicating a problem. I then went to a celiac gi doc who performed biopsy. My blood tests only marginally indicated celiac, but the endo confirmed moderate/heavy damage from celiac. After diagnosis we've looked back over my health history and believe I've been celiac all of my nearly 44 years. SO now my children and grandchild are being tested as they have each had different autoimmune type health problems. Oldest was diagnosed with lupus at 13. Middle son, the one I mentioned early is very healthy EXCEPT for the ongoing sinus/congestion problem with some unexplained flu type (no fever) illnesses over the years. Youngest son was sick for nearly a year two years ago...we ran alot of rhuematology on him because of the sister with lupus...nothing was ever found.

Happy to answer anything as this site has been very helpful to me as we learn what we need to do to stay healthy.

Thanks much for replying. Would you be willing to post again after getting results re your son? I just returned from an appointment for my son with the immunologist who ordered the celiac panel and iron anemia test. He (the dr) says my son's iron is perfect and he strongly believes that the negative celiac results are accurate (according to him, my son did have enough ongoing gluten content in his diet, especially the last two weeks before the test) based on his experience with many he has had tested for celiac. That said, he acknowledged that if my son does indeed feel better without gluten, then by all means to go gluten free. His suggestion was to do that for 6 months and re-evaluate--see if my son feels better, and can decide then if he would like to try reintroducing gluten for a couple months and then re-testing. At this point, we're just going to stick with the gluten-free approach and see where it leads; but I would appreciate hearing more about your son's results, given that you have been diagnosed celiac. Thanks again.

[GottaSki]

Thanks much for replying. Would you be willing to post again after getting results re your son? I just returned from an appointment for my son with the immunologist who ordered the celiac panel and iron anemia test. He (the dr) says my son's iron is perfect and he strongly believes that the negative celiac results are accurate (according to him, my son did have enough ongoing gluten content in his diet, especially the last two weeks before the test) based on his experience with many he has had tested for celiac. That said, he acknowledged that if my son does indeed feel better without gluten, then by all means to go gluten free. His suggestion was to do that for 6 months and re-evaluate--see if my son feels better, and can decide then if he would like to try reintroducing gluten for a couple months and then re-testing. At this point, we're just going to stick with the gluten-free approach and see where it leads; but I would appreciate hearing more about your son's results, given that you have been diagnosed celiac. Thanks again.

Will do and I can tell you that my Celiac Doctor - we are fortunate to live in San Diego where there is a Celiac Center at the Univ of Calif, San Diego - cautioned me against going gluten free before having the endoscopy so we would have confirmation of Celiac. As I understand it...it is not possible to determine Celiac stricktly from blood tests.

Here is the link to the Celiac Center at UCSD in case you are interested...they do have some valuable info. Open Original Shared Link

[JW88]

My son had a CT scan which showed one polyp in a rear sinus, but the doctors say this would not cause his post-nasal drip. Why not?

Also, I'm still confused on the gluten issue: it sounds as though even a tiny amount can cause symptoms if one is intolerant/ celaic BUT you have to eat a LARGE amount for weeks for the antibodies to show up on the test? Is that right?

I think the polyp could cause post-nasal drip. And it will probably continue to grow larger until it is removed. I'd get it out now, because the bigger they get, the rougher the surgery is. I know. Mine were huge and I ended up having bad bleeding after the surgery.

And, yes, you'd have to eat "normal" again for at least a month before a test to search for celiac disease. That's what my doctor told me. I was like, "There is NO WAY I'm going back on gluten to get tested!" The good news is, it's my understanding that any intestinal "damage" is reversible by maintainign a gluten-free diet. Be safe than sorry and just drop the gluten. If your son feels better without it, then this shouldn't be a problem.

[RoseRobin]

I think the polyp could cause post-nasal drip. And it will probably continue to grow larger until it is removed. I'd get it out now, because the bigger they get, the rougher the surgery is. I know. Mine were huge and I ended up having bad bleeding after the surgery.

And, yes, you'd have to eat "normal" again for at least a month before a test to search for celiac disease. That's what my doctor told me. I was like, "There is NO WAY I'm going back on gluten to get tested!" The good news is, it's my understanding that any intestinal "damage" is reversible by maintainign a gluten-free diet. Be safe than sorry and just drop the gluten. If your son feels better without it, then this shouldn't be a problem.

Part of my concern about determining more accurately whether or not my son really is celiac or "just" gluten intolerant is:

1) if he is celiac,then the rest of us in the family could also be "silent" celiacs; how would we know if we are damaging our digestive systems too?

2) If my son thinks he just gluten intolerant, and occasionally "slips up" re eating gluten, then there wouldn't be so much fear that he might be causing intestinal damage; but if he is celiac, then from what I understand even trace amounts can cause damage.

Why would our immunologist, who had tested many for celiac, tell us that two weeks on a gluten diet, along with the low-gluten diet my son had for a couple of months, would be enough for the blood tests? He is quiet certain himself that my son is not celiac, even though he acknowledged that there are celiacs without the typical symptoms. I asked him about the possibility of genetic testing but he thought that wouldn't be worth the $$. I don't know where to go from here.

[nora-n]

It is more or less difficult getting a diagnosis for ordinary celiac after a low-gluten diet and a couple of weeks back on gluten.

The most recent abstracts where they mentioned a gluten challenge I noticed they had upped the gluten amount per day, now it is 0,5 milligrams per kg which would be 35 grams for a 70 kg person.

I myself was back on gluten for five weeks and 0,3 grams of gluten which amounted to 21 grams and our bread here calculated to 6 slices a day.

the new amount would be about 10 slices a day 8you still have to read the labels and do the math in your case)

Also, the sortest challenge time I ran across was 6 weeks, and it is more like 3-6 months and I know of someone who was put on one year challenge.....

Other options: Enterolab is much more sensitive, but coan only test for gluten sensitivity because it catches gs early. There are stool tests for ttg IgA. If you have IgA deficiency that test is not valid either.

antigliadin IgG may show positive much earlier than ttg, but here where I live it is not offered , and they only run it i the total IgA is low, and they prefer the ttg test only.

If you google ford gluten you get to his website and he deals with gluten sensitivity and discovered that the antigliadin IgG test is important too.

and, there are food intolerance test panels where they test for a lot of foods and IgG antibodies to them, and there are combined IgG and IgM panels out there. I know of some who only have IgM antibodies when tested. I have never been offered IgM tests, and I paid ofr IgG food panel privately.

And, ther eis the enterolab gene test. The other celiac gene tests usually just test positive or negative for DQ2 or 8, but the gene test by Enterolab is done by the American Red Cross and they tell you both the beta chains.

nora

[RoseRobin]

It is more or less difficult getting a diagnosis for ordinary celiac after a low-gluten diet and a couple of weeks back on gluten.

The most recent abstracts where they mentioned a gluten challenge I noticed they had upped the gluten amount per day, now it is 0,5 milligrams per kg which would be 35 grams for a 70 kg person.

I myself was back on gluten for five weeks and 0,3 grams of gluten which amounted to 21 grams and our bread here calculated to 6 slices a day.

the new amount would be about 10 slices a day 8you still have to read the labels and do the math in your case)

Also, the sortest challenge time I ran across was 6 weeks, and it is more like 3-6 months and I know of someone who was put on one year challenge.....

Other options: Enterolab is much more sensitive, but coan only test for gluten sensitivity because it catches gs early. There are stool tests for ttg IgA. If you have IgA deficiency that test is not valid either.

antigliadin IgG may show positive much earlier than ttg, but here where I live it is not offered , and they only run it i the total IgA is low, and they prefer the ttg test only.

If you google ford gluten you get to his website and he deals with gluten sensitivity and discovered that the antigliadin IgG test is important too.

and, there are food intolerance test panels where they test for a lot of foods and IgG antibodies to them, and there are combined IgG and IgM panels out there. I know of some who only have IgM antibodies when tested. I have never been offered IgM tests, and I paid ofr IgG food panel privately.

And, ther eis the enterolab gene test. The other celiac gene tests usually just test positive or negative for DQ2 or 8, but the gene test by Enterolab is done by the American Red Cross and they tell you both the beta chains.

nora

My son's test panel included: immunoglobulins IgG, IgA, IgM; IGE; celiac autoantibodies.

Is that a good range of tests?