Testing/diagnosis Question

[Marc49]

It was suggested by Sylvia,....one of the mods, to post this question over here, so here goes. First a bit of history:

It all started when my 'regular' doctor who is an Internist, but also practices 'functional medicine' did a 4X/day saliva test on me. He was actually tracking my cortisol levels, but some aspect of the test that can indicate gluten intolerance came back borderline. Not positive, but also not negative. He then had me do the EnteroLab gene test which I will copy at the end of this,...it was positive. He suggested a gluten free diet at that point but I did not start then.

The reason is I was already scheduled for an endoscopy/colonoscopy within a month. My GI doc ordered this due to the fact of a family history of polyps, and to also check me for Barrett's syndrome due to my GERD.

Anyway,.....I told him I wanted to be tested for celiac disease through biopsy.

My results came back clean on the other stuff, and my biopsies for the celiac came back negative. My report read something like "No sign of celiac sprue, and no villi damage."

My GI doc then told me to disregard the gene test, and he felt going gluten-free was crazy since I had no signs of any problem. He also said that all I had was some occasional IBS, which my mother has had for many years. My primary physician still said I should go gluten-free regardless of what the GI doc said.

I started the diet when I joined this site the first of the year, and have adapted fairly well, short of bread products.

I am planning on going back to my regular diet sometime this fall for a few weeks to see what happens. Once my GI doc found out that I had gone gluten-free, he also said this would be the best way to prove to myself whether I have an issue or not,....he still insists that what I am doing is nuts based on a gene test.

I guess after this novel, what I am looking to find out from you folks is what your opinions are, and if you think I am doing the prudent thing. If I only carry the gene, I certainly don't want to stay on this diet if I don't need to, but at the same time I don't want to cause damage to myself.

The part that is starting to make me lean towards my GI docs point of view is the fact that my GERD has gotten no better at all after all this time, and I still have bouts of GI issues from time to time, although they seem to be less frequent since going gluten-free. It's very confusing to me, and any input of opinions or further testing to confirm or deny would be appreciated!

"Gluten Sensitivity Gene Test

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.

For more information about result interpretation, please see Open Original Shared Link

Stool analysis performed and/or supervised by: Frederick Ogunji, Ph.D., EnteroLab

Molecular Gene Analysis performed by: American Red Cross

Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab

Thank You For Allowing EnteroLab to Help You Attain Optimum Intestinal And Overall Health."

[krystynycole]

I would say that just because you have the gene does not mean you have to be gluten free. I do not have any signs and choose to be gluten-free because it makes me feel better. I have no proof from any sort of testing that I am Celiac, however all of my symptoms go away when I stop eating gluten. So if you eat gluten again in a gluten test and feel fine after a couple days or weeks then I would stay eating gluten...but that's just me

You also mention that your GERD still has not gotten better in all this time. When you had your colonoscopy did they look at your esophagus closely? I have struggled with GERD for a long time and during my colonoscopy the doctors discovered that I have a herniated esphogus...aka the valve/flap that allows your food to go down, but keeps your stomach acid from coming up too far does not work all and things are allowed to roam free up and down into places it shouldn't resulting in a constant feeling of GERD. I don't know if I'm way off track on that one for you, but it's just a thought to think about...

[Marc49]

I have been on Nexium 40mg once a day for several years.

As you most likely know it is a PPI, and I don't have the acid reflux issues I had before.

On the other hand, I can still have a feeling of something trying to regurgitate on me if I go to bed too soon after a meal, or if I happen to roll over onto my right side.

I DO have a small hiatus hernia, but my GI doc says that about 50% of folks my age have the same thing. I keep trying to get off of the PPI as I am aware of the risks of long term use.

A very good friend of mines wife is on Nexium 40mg twice a day, plus carafate several times a day. She is going to be part of a research study involving a new procedure that basically replaces the esophageal valve with a magnetic one.

Anyway,....that is getting way off topic.

I appreciate your input, and think challenging myself with a regular diet again is the best thing for me to do.

At this point I can't even do further testing if I wanted, because of the length of time I have been gluten-free.

[krystynycole]

So we basically are in the same boat with the GERD. I take Zegrid daily each morning which is just another PPI, but as far as I can tell it will be a life long thing unfortunately. The risks of doing the corrective surgery far out way the meds...or so i am lead to believe my by doctors!

Good luck with the gluten again and eat a big piece of warm french bread with olive oil and parmesan cheese for me! (okay I need to stop now before I convince myself one piece won't kill me ha ha) Hope it goes well

[Bubba's Mom]

Your blood tests seem to show a potential for problems? It doesn't mean you have developed Celiac, but could.

With no villi damage it should be safe for you to do a gluten challenge to see how you react?

Gerd could be from dairy or some other food that doesn't agree with you?

Are you keeping a log of what you eat with reactions noted? It can help pinpoint foods that could be irritating your system.

[Marc49]

So we basically are in the same boat with the GERD. I take Zegrid daily each morning which is just another PPI, but as far as I can tell it will be a life long thing unfortunately. The risks of doing the corrective surgery far out way the meds...or so i am lead to believe my by doctors!

Good luck with the gluten again and eat a big piece of warm french bread with olive oil and parmesan cheese for me! (okay I need to stop now before I convince myself one piece won't kill me ha ha) Hope it goes well

Your idea of french bread with olive oil and parm falls right up my alley,....I will do that just for you when I challenge myself! LOL

My friends wife is in really bad shape,.....I guess she has to do something. I believe it is Mayo that is doing this.

Personally,......I don't want ANY surgery unless it's a matter of life or death, thank you very much!

My GI doc has told me that I will probably have to stay on a PPI for life as well. I guess I'm a PIA, and try to fight against my issues per se.

I'm sure you know you need to have your calcium, magnesium, and B-12 levels checked frequently when on long term PPI usage?

Magnesium depletion is a new finding, and can result in heart arrhythmias if you don't eat a diet containing enough, or supplement through a vitamin.

Thanks much for your input!

[Marc49]

Your blood tests seem to show a potential for problems? It doesn't mean you have developed Celiac, but could.

With no villi damage it should be safe for you to do a gluten challenge to see how you react?

Gerd could be from dairy or some other food that doesn't agree with you?

Are you keeping a log of what you eat with reactions noted? It can help pinpoint foods that could be irritating your system.

I never had ANY blood test for celiac disease.

The gene test is done by rubbing a cotton swab against the lining of your cheek hard enough to take off cells for testing.

They say to do it to the point that it might be uncomfortable, but not to bring blood.

The gluten challenge seems the way to go I guess, as I have tried to keep track of different foods that I eat to see if I have a reaction.

I can eat a certain meal 4 or 5 times with no problem, but the next one will give me GI issues.

This is what my GI doc calls IBS,.......in other words, nothing concrete.

[shadowicewolf]

you sound like me. I came back with a positive blood and gene test but nothing showed up on the endo. My GI doc is somewhat unsupportive and my new regular doc doesn't know that much about it to comment on it (her words, smart imo) and she suggested i go and see a new GI doc ><

I have no desire what so ever to go back and eat gluten. It made me so sick (with C, indidgestion, increased anxiety, and that damn burning feeling).

They just don't get it

[JoshB]

There's no such thing as a DNA test for gluten intolerance, and if you have a parent with celiac sprue the odds are that you do not have it yourself. Sure the odds that you do have it are higher than the general population (just as determined by family history), but even with a positive parent your odds would only be about 20%.

DNA tests are very useful for screening out a celiac diagnosis. They can tell you that it's not possible for you to develop intolerance and they can tell you if you're more likely than normal to develop celiac disease, but the test can't tell you if you already have developed it or if you ever will.

I don't trust Enterolabs in general. They seem to have made a business out of testing positive rather than simply testing. It looks like they've made up a bunch of tests on their own, and there's nothing to back up that their tests work other than their own statements and opinion on the matter. Furthermore I'm not sure about their interpretation of the red cross' test either.

Searching on Google and Wikipedia I think I can tell two things:

#1 -- You are freaking weird. No offence, but hardly anybody has your HLA-DQ type.

#2 -- While DQ 8.1 comes with a slight risk of celiac trouble. DQ 8.5 does not seem to. Although as Wikipedia points out this might just be because there are so few people with that genotype that we simply haven't found a DQ8.5 celiac, rather than such a thing not being possible.

(I could be completely misinterpreting the info here. I'm not a geneticist nor do I play one on TV. I'm just reading what the website says.)

You can test high for gluten antibodies without having celiac sprue or even allergy or general intolerance. That's why they also test for tissue-transglutaminase antibodies (basically 100% diagnosis if found). If they don't find TTG, then they want to do a biopsy for confirmation. Apparently there are a number of problems that can raise gluten antibodies: ulcers, IBS, anything that pokes a hole in your gut. If gluten gets into places it's not meant to be in, then your body can start reacting to it.

[Marc49]

That gene test meant absolutely nothing to me,.....I simply trusted what my doc told me at the time.

I also don't understand now, why he didn't order a blood test. He simply took the borderline saliva reading and went straight for the gene test. At that point he told me I should go gluten-free.

Then I got the endoscopy and nothing showed up at all. As I said before, my GI doc says my regular doc is putting me through misery for nothing, as I have no signs of any trouble short of some IBS that comes and goes.

I guess the last thing I could do to clear myself per se, would be to have a blood test done after I have been eating gluten again for several weeks.

If anyone knows what the most reliable test is for gluten intolerance, I would appreciate knowing the name so I can request it specifically.

I have since also read that the saliva tests are not very accurate either, so that makes me wonder about my 'borderline' reading as well.

Don't get me wrong,....if I need to do this, it isn't the end of the world, as I have been doing it since the first of the year already. I just don't want to deal with this diet if I don't really need to.

As bad as I feel for some of you that really suffer with this issue, at least many of you have a definitive diagnosis, not some theory formed from 'hocus-pocus' type tests like I have.

[JoshB]

That sounds like a smart idea to me. Make sure you're eating gluten for a couple months then ask for a celiac panel. Unfortunately there doesn't seem to be a standardized name for the tests, but mainly everybody is running the same thing now. It should test for anti-transglutaminase(usually known as ATA or tTG) antibodies and/or for antiendomysial(usually known as IgA), usually the tests also include gliadin(AGA) antibodies which are less specific to celiac disease but more sensitive. You'll also see a "total serum IgA", or maybe just another test marked as "IgA" with. That one will have a range you're supposed to be within --all of the other tests are under/over. The "total serum" is checking that you are properly producing antibodies in the first place, as it's possible to have a false negative on the other tests if your immune system is out of whack. The whole panel should cost about $250, though your doctor may also want to tack on some additional tests for other possible conditions and/or vitamin deficiencies (very common in celiac cases).

[Marc49]

That sounds like a smart idea to me. Make sure you're eating gluten for a couple months then ask for a celiac panel. Unfortunately there doesn't seem to be a standardized name for the tests, but mainly everybody is running the same thing now. It should test for anti-transglutaminase(usually known as ATA or tTG) antibodies and/or for antiendomysial(usually known as IgA), usually the tests also include gliadin(AGA) antibodies which are less specific to celiac disease but more sensitive. You'll also see a "total serum IgA", or maybe just another test marked as "IgA" with. That one will have a range you're supposed to be within --all of the other tests are under/over. The "total serum" is checking that you are properly producing antibodies in the first place, as it's possible to have a false negative on the other tests if your immune system is out of whack. The whole panel should cost about $250, though your doctor may also want to tack on some additional tests for other possible conditions and/or vitamin deficiencies (very common in celiac cases).

Thanks a lot for the information.

I presume this is a mainstream test, and is simply a blood draw?

Where I live I use Quest Diagnostics for all of my blood work.

Also looks like I need to 'gluten' myself a bit longer than I was thinking before testing.

[JH85]

My mother was diagnosed with celiac over 19 years ago.... I too had shown signs of a possible problem with gluten.... that was about 6 years ago.... over the past year maybe two my stomach issues, IBS, Dairy allergy, chronic nausea and every thing under the sun linked to a stomach had gotten extremely bad. I lost a ton of weight due to not being able to keep anything in me. I went to my doctor and asked what he felt was wrong and thankfully he is my mothers doctor as well. So he knew well about my mothers case and sensed a lot of the same symptoms. We then decided to begin a gluten free diet. that was about 2 months ago. Almost all of my issues went away yet some still linger but are under control since adhering to a gluten-free diet. Recently went to see my doctor to see if I should see a GI doctor and he said bluntly.... "I wouldn't but if you want to you can, but after the results you've had while adhering to this strict diet, you'd be dumb to go and spend the money on co-pays and make the insurance peoples pockets swell for them to tell you something that either you already know or that they need to run more tests which will lead to more co-pays, pain, sickness from eating gluten and the time spent away from home,work or where ever." Now of course that was in my situation where adhering to a STRICT gluten-free diet with no "cheating" as hard as it is. Basically if it was helping at all.... give it some more time without cheating at all which will just send you back down the mountain so to speak....... Hope you find what works for you and helps you in your situation.

[JoshB]

I just got blood drawn for a six month maintenance/compliance test for Quest. They have two versions of the test. One was $160 but didn't include the "total serum", I think. The other was $250 and did check total serum.

[mushroom]

The newest blood test for celiac is the Deamidated Gliadin Peptide (or DGP) and seems to be better than the others (and more specific) IMHO. If you are ever thinking of glutening yourself up for celiac testing I would make sure they included that one too.

[JoshB]

The newest blood test for celiac is the Deamidated Gliadin Peptide (or DGP) and seems to be better than the others (and more specific) IMHO. If you are ever thinking of glutening yourself up for celiac testing I would make sure they included that one too.

DGP, looks good, but as the new kid on the block I think it's going to be more expensive and harder to find. From what I've read it has roughly the same sensitivity and specificity as current tests, though there is evidence that it's more effective for children.

Open Original Shared Link

[pain*in*my*gut]

The newest blood test for celiac is the Deamidated Gliadin Peptide (or DGP) and seems to be better than the others (and more specific) IMHO. If you are ever thinking of glutening yourself up for celiac testing I would make sure they included that one too.

Ditto what Mushroom said. DGP is the current choice for most docs and labs over the older, less specific gliadin antibody screens.

For the gluten challenge, you will need to be eating gluten for at least a month or two. Most docs say 3-4 is optimum.

Good luck!

[Marc49]

Ditto what Mushroom said. DGP is the current choice for most docs and labs over the older, less specific gliadin antibody screens.

For the gluten challenge, you will need to be eating gluten for at least a month or two. Most docs say 3-4 is optimum.

Good luck!

Thanks for all of the info folks,.....I'm going to call Quest soon and see exactly what they offer.

I have to use them due to my insurance, but I prefer them anyway.

I need to know what to ask for, as my doc will probably roll his eyes and ask me why I don't just stay gluten-free.

On the other hand if I know exactly what I want done, he always goes along with it. He knows I am the type that will find another doc if needed.

[pain*in*my*gut]

Thanks for all of the info folks,.....I'm going to call Quest soon and see exactly what they offer.

I have to use them due to my insurance, but I prefer them anyway.

I need to know what to ask for, as my doc will probably roll his eyes and ask me why I don't just stay gluten-free.

On the other hand if I know exactly what I want done, he always goes along with it. He knows I am the type that will find another doc if needed.

Good for you, Marc! Remember, doctors work for us, and unfortunately sometimes we have to tell them exactly what we want. I have learned this the hard way. You have to be your own advocate.

Good luck!

[sa1937]

My local hospital uses Quest and when my dr. wrote the lab slip for my celiac panel, I had the older one. In contrast my daughter in Denver goes to LabCorp for any lab work and when her dr. requested the celiac panel for her, she had the newer DGP panel. Surprisingly our results were almost identical. I know the DGP is the newer of the two. We were both off-the-charts positive.

[Marc49]

My local hospital uses Quest and when my dr. wrote the lab slip for my celiac panel, I had the older one. In contrast my daughter in Denver goes to LabCorp for any lab work and when her dr. requested the celiac panel for her, she had the newer DGP panel. Surprisingly our results were almost identical. I know the DGP is the newer of the two. We were both off-the-charts positive.

I believe my insurance might let me go to LabCorp now, but it's not convenient for me in terms of location anyway.

Plus my mother that lives in the same county as I do, has used LabCorp and gotten some wacky test results compared to Quest.

This is certainly what I will be doing, but I am still going to wait for fall and cooler weather due to my business. IF I get issues after starting a challenge, I don't want to have to deal with them in this heat right now.

Wonder how many pizzas I can eat from my favorite old place in 3 to 4 months for my challenge?

[sa1937]

Wonder how many pizzas I can eat from my favorite old place in 3 to 4 months for my challenge?

I'd eat pizza until I couldn't stand the sight of it anymore!