Enterolab Results Came In

[AliceW]

OK, so I just got my enterolab results back, and I'm not sure how to interpret them, or exactly what to do now. I think I need to provide a little bit of back story, so please bear with me.

My story in brief: I had perfect digestive health until I had a terrible case of mononucleosis when I was 19. I "recovered," but from that point onward I have had severe heartburn/reflux/gastritis requiring daily high doses of medication (a proton pump inhibitor such as Prevacid or an H2 blocker such as Pepcid) plus antacid tablets. I had two endoscopies done about 5 years apart, but neither showed anything other than "mild antral gastritis." I also had persistant diarrhea for a few years and got a diagnosis of "irritable bowel syndrome" (more recently my lower GI tract issues have been constipation and gas, accompanied by frequent bloating that is sometimes quite painful, but the heartburn has always been the main issue).

So, when a doctor recently told me he wanted me to get yet ANOTHER endoscopy and to consider surgery to control my heartburn without ever having found its cause, I decided to take matter into my own hands and do some research (which is how I ended up here on this site).

Based on what I learned, I started an aggressive program of lifestyle and diet changes to deal with the heartburn about 2 months ago. I cut out coffee, all carbonated beverages, raw garlic and onions, chocolate, and alcohol. I put the head of my bed up on blocks, and I avoid eating for at least 3 hours before lying down or exercizing. I'm also using various herbs (DGL, slippery elm, and marshmallow root), along with aloe, alginate, and digestive enzymes. All that has allowed me to go from taking a high dose of a proton pump inhibitor to a fairly low dose of an H2 blocker (a milder drug). However, despite all those changes I still get heartburn every day even with the H2 blocker, often have to pop antacids, and I still have problems with bloating.

Now (finally!) I get to enterolab. I'd read in various places that a wheat/gluten sensitive could cause chronic heartburn, so I was curious about that. I asked for a serum IGA anti-gliadin test during my annual physical, but it came back negative. So although I was pretty skeptical about enterolab, I decided they seemed legitimate enough to try getting a few tests done. I just got the results back today. Here they are:

Gluten sensitivity Stool Panel Complete

Fecal Antigliadin IgA 27 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 33 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 132 Units (Normal Range <300 Units)

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Antitissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

So here's what I think might be going on: if I am having an autoimmune reaction to gluten, could it be happening primarily in my esophagus rather than my intestine??? That would explain my symptoms (primarily heartburn) and the lack of malabsorption. ????

Also: I think I know what you guys are going to say to this, but I have to ask: do you REALLY think enterolab is legitimate?? And does this REALLY mean I should NEVER eat an ounce of gluten-containing foods ever, ever again? Clearly I can't have actual celiac disease with no malabsorption, right?

I just don't know what to think. I'm not 100% convinced that enterlab is for real, and if they are and these results are correct, I don't know whether to be happy I may have finally found the cause of my suffering or whether to be sad that I might never be able to eat pasta again (I'm getting married in Italy next spring!).

Help?!?

Alice

[happygirl]

Hey Alice-

Well, you knew I would post

Couple things:

you do not have to have malabsorption to have Celiac or "just" gluten intolerance.

you said: "So here's what I think might be going on: if I am having an autoimmune reaction to gluten, could it be happening primarily in my esophagus rather than my intestine??? That would explain my symptoms (primarily heartburn) and the lack of malabsorption. ????" I think you are partly right here....but I wouldn't say that the gluten is attacking per se, your esophagus, but merely that is where you are having the symptoms. Some "full blown" celiacs have heartburn, others do not, some have D, others do not---it is the variation in the symptoms-but they don't know why. Gluten can affect every organ and system in the body, pretty much (neuro, bone/muscle, all of digestion, etc)

since you didn't get gene tested, we can't rule in/out Celiac and/or gluten sensitivity based on the genes.

alice, I can't remember. did you have the bloodwork done? did you have the full panel run or only part (blame it on the brain fog---i have no memory!)

also, has your doctor suggested eosinophilic disorders? You might want to look it up (www.apfed.org) and see if its worth looking into.

Lets see where this leads, my dear!

[Budew]

You have really been doing a lot to figure this out. I don't know what to say except that havingceliac doen't mean no more pasta it just means you need to eat gluten free pasta. Once I obstained fora while I found that I really enjoy italian rice pasta. Gluten free really is not bad. Especially if you feel better.

Hope someone else can help you with your results. I see many folks on this site who use the Entro lab.

I'll bet you will get some good info here. While waiting for a response you might want to seach the archives.

[Ursa Major]

Hi Alice, and welcome to this board. It has been shown over and over that Enterolab is (this far) always right. Your symptoms are typical of what many people here have gone through. Yes, you absolutely need to stay away from gluten for the rest of your life. Even a little tiny bit is too much.

The good news is, that Italy is far more advanced than the USA (or Canada) when it comes to celiac disease, and it is EASY in Italy to find restaurants with gluten-free foods, in comparison to here. The same goes for gluten-free pasta, bread etc. I hear they have fabulous gluten-free pasta. So, your visit to Italy should be no problem at all. You know, there it is mandatory to have EVERY CHILD tested for celiac disease before entering school at the age of six! So, celiac disease awareness is high there.

And here you can get several brands of gluten-free pasta, too. Kinnikinnik seems to be everybody's favourite (I don't know how good it is, as I can't eat any grains at all).

At the beginning of your gluten-free diet, you should probably eliminate all dairy products as well as gluten. After your symptoms get better (which can take a few months), you can try dairy again, to see how you do with it. Many people with celiac disease are casein intolerant as well. Too bad you didn't get that test from Enterolab as well.

[bklynceliac]

Alice,

while I do not agree with ursula's statment saying that it has been shown enterolab is always right (in my opinion the verdict is still out), I will say that combining your chronic health problems with these test results suggest to me that you should give the gluten-free lifestyle a prolonged shot. Essentially, what have you got to lose?

The one thing I will say strongly, and agree with Ursula on, is there is no point in reducing your gluten in-take but not eliminating it all together. I'm not sure if you were directly asking that, but if you're going to trust the enterolab results (as I have done and had a pretty good health response) then you must cut gluten out 100%. If you're going to decide you don't buy what they're selling, that's your choice, and I understand it. But if you think that gluten *may* be a problem and so you'll just try to cut back a bit and see if it helps, you won't get anywhere. If you're intolerant, you're intolerant and even a little bit will make you sick, perhaps in ways that aren't immediately apparent. I would say then that whatever you decide (and with your medical history I think there's good reason to go gluten-free), do it 100%.

[AliceW]

since you didn't get gene tested, we can't rule in/out Celiac and/or gluten sensitivity based on the genes.

alice, I can't remember. did you have the bloodwork done? did you have the full panel run or only part (blame it on the brain fog---i have no memory!)

also, has your doctor suggested eosinophilic disorders? You might want to look it up (www.apfed.org) and see if its worth looking into.

Lets see where this leads, my dear!

Do you mean that I may not have a gluten sensitivity, despite these test results, if I don't have the genes for it?

The eosinophilic disorder thing is interesting...I read up on it a bit after you first suggested it to me. However, everything I read said that eosinophilic esophagitis typically doesn't respond to acid blocker medications, and my heartburn IS relieved by those meds...I don't think it's normal to have to take acid-blocker drugs every day for 15 years! Also, I don't have a lot of the other symptoms at all (nausea, etc).

Maybe my next steps should be to start a gluten-free diet and get a gene test?? (A suppose a biopsy could also find eosinophilic disorders, if I wanted to go that route....I'm just so reluctant to get another endoscopy for some reason...I have a phobia about choking, and the scope just completely freaks me out....)

As for the blood tests: I asked for a celiac panel, and the doc only ran IGA (and it was negative). : ( My fault...you DID warn me that I should specifically ask for the tests I wanted...I just felt like I was being too pushy. : (

Maybe I should go see a doctor who specializes in celiac disease. I had been planning to go see Dr. Green at Columbia, but it is very hard to get an appointment with him. I guess I should go back to trying to be seen by him or another doctor at the Columbia U center. Does anyone know if they are going laugh me out of the office if I bring in the enterolab results?

Alice

[Guest nini]

ultimately it's how your body does on the gluten-free diet that is the true test. Enterolab can indicate a gluten intolerance, which it has done in your case, but it cannot dx Celiac. Just because you do not have malabsorption now, it does not mean you aren't headed down that path. Many of us have had our disease either triggered by mono or exaserbated by it.

My mom just came back from Italy and she brought me the most amazing gluten-free pasta. She said they sell it in the pharmacies there...

[AliceW]

Alice,

while I do not agree with ursula's statment saying that it has been shown enterolab is always right (in my opinion the verdict is still out), I will say that combining your chronic health problems with these test results suggest to me that you should give the gluten-free lifestyle a prolonged shot. Essentially, what have you got to lose?

The one thing I will say strongly, and agree with Ursula on, is there is no point in reducing your gluten in-take but not eliminating it all together. I'm not sure if you were directly asking that, but if you're going to trust the enterolab results (as I have done and had a pretty good health response) then you must cut gluten out 100%. If you're going to decide you don't buy what they're selling, that's your choice, and I understand it. But if you think that gluten *may* be a problem and so you'll just try to cut back a bit and see if it helps, you won't get anywhere. If you're intolerant, you're intolerant and even a little bit will make you sick, perhaps in ways that aren't immediately apparent. I would say then that whatever you decide (and with your medical history I think there's good reason to go gluten-free), do it 100%.

Bklynceliac,

What do you mean by "a prolonged shot"? 2 months? 6 months? A year? And what about accidental gluten ingestion? Would accidentally eating a bit of hidden gluten set me back to square one every time?

I'm really worried about my ability to avoid gluten 100%. It seems to be everywhere!

(Incidentally, I'm in Brooklyn too..near Prospect Park. )

Alice

[AndreaB]

Gluten sensitivity Stool Panel Complete

Fecal Antigliadin IgA 27 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 33 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 132 Units (Normal Range <300 Units)

You have a gluten sensitivity which means gluten free for life. You also have an autoimmune response going on, but don't have malabsorption.

Tinkyada rice pasta is very good and there a lots of other subs out there depending on if you have any other intolerances.

[happygirl]

Alice-

As you know now, you DO have to be pushy. Who cares what a doc thinks about you? You are the one who has to feel better, not some lousy doc You are your ONLY advocate for your health.

In terms of the genes, I meant that without a gene test, it can be hard to say if it is/isn't celiac or gluten sensitivity. I.e., celiac genes and no g/s genes...prob celiac. no celiac genes and g/s genes...prob g/s. one of both--who knows.

I would recommend going to your doc, if you are still eating gluten, printing out the full panel, telling him you want it done, and having it done. As to be gene tested for Celiac genes as well. Simple as that It is your docs fault that he did not follow proper protocol-not yours; but, it is your health that suffers.

And if you take enterolab to Dr Green/Fasano/other experts, they will probably not be interested. They have both written about stool samples and they do not believe they are accurate. I still don't know what to think. I see the pros and cons of both sides...but his results have not been published yet. When/if they are, that will change people's minds.

I think going to see Dr. Green et al can't hurt anything. Worst case: takes a few months and you get dx. or, wait a few months and get a negative. or, you keep searching and never get answers....

but, you can always go gluten free and see what happens. you don't need a dx of ANYTHING to stop doing something that makes you feel bad. but, you know this already!

[mommida]

You have enough information (test results)and symptoms to go on the gluten free diet. You could prolong the testing experience, try genetic testing. I don't believe every gene has been isolated. Even the most distinquished labs (Prometheus and others are respected by the medical professionals) admit they know their test misses at last 2% of the known Celiac genes.

It may seem overwhelming at first, but you will get the hang of the diet - and this web site and all of the members are here to help.

If your testing is done, start the diet. If you are still going to have tests done, you have to continue eating gluten and hope that the levels of damage is enough for tests to catch.

To answer the question about where can gluten intolerance cause damage? That is still being researched. At least two years ago someone had posted about their grandfather having tests done. It was a while ago and my memory may not be 100% accurate. At Columbia Hospital? never quite had the full Celiac diagnoses, but too many Celiac type symptoms to rule it out, unfortunately succumbed to the illness, and when his body was autopsied damge was found to the OUTSIDE of his intestines. The person either didn't stick around, changed their name, or was just some prankster with an interesting story and a perverse sense of humor.

L.

You might want to check out the post about being denied insurance coverage because of an official celiac disease diagnoses.

[bklynceliac]

Entirely in MY OPINION, I would say if you began a gluten-free diet tomorrow it would take you about 2 months (based on my experience) to figure it all out and get all the gluten actually out of your diet and lifestyle. I would say if you devote yourself to gluten-free living for 6 months after that and see zero improvement, then gluten might not be an issue for you and you can look for other answers. That's my opinion, and probably what I would do in your situation. But again, that's just one man's view, others on this board will tell you it can take up to a year to see any improvement at all, and you should do what you think makes most sense for you. You're right to be worried about accidental glutening and 100% elimination, it can be tricky. That's why I suggested the 2 months of assimilation time. But after a while you will get the hang of it, I promise. Eventually your mind just eliminates the foods you can't eat, and you don't have to fight yourself over them every time you pass a cookie or a tasty muffin. And honestly, if it happens that gluten is making you sick, you'll be so angry at those foods that you won't be tempted by them.

If you feel like you need to get a more established medical opinion about Celiac's, Dr. Susie K. Lee who works with Dr. Green at Columbia is a lot easier to get an appointment with, so you could try that. But no, she will not be impressed by Enterolab results. However, she may have other thoughts that you haven't considered.

I will say that while I'm not a full believer in Enterolab, you can see from my sig that I tested with them, and have felt better since following their advice. And if you're worried about being able to handle the diet, I promise, being gluten-free is a lot easier than being sick constantly.

We're in the same hood. If you want to PM me, I have plenty of health food store recommendations if you'd like.

[oceangirl]

Entirely in MY OPINION, I would say if you began a gluten-free diet tomorrow it would take you about 2 months (based on my experience) to figure it all out and get all the gluten actually out of your diet and lifestyle. I would say if you devote yourself to gluten-free living for 6 months after that and see zero improvement, then gluten might not be an issue for you and you can look for other answers. That's my opinion, and probably what I would do in your situation. But again, that's just one man's view, others on this board will tell you it can take up to a year to see any improvement at all, and you should do what you think makes most sense for you. You're right to be worried about accidental glutening and 100% elimination, it can be tricky. That's why I suggested the 2 months of assimilation time. But after a while you will get the hang of it, I promise. Eventually your mind just eliminates the foods you can't eat, and you don't have to fight yourself over them every time you pass a cookie or a tasty muffin. And honestly, if it happens that gluten is making you sick, you'll be so angry at those foods that you won't be tempted by them.

If you feel like you need to get a more established medical opinion about Celiac's, Dr. Susie K. Lee who works with Dr. Green at Columbia is a lot easier to get an appointment with, so you could try that. But no, she will not be impressed by Enterolab results. However, she may have other thoughts that you haven't considered.

I will say that while I'm not a full believer in Enterolab, you can see from my sig that I tested with them, and have felt better since following their advice. And if you're worried about being able to handle the diet, I promise, being gluten-free is a lot easier than being sick constantly.

Alice,

All great advice. I just wanted to throw in that, should you decide to have an endoscopy, you can be put under. I have a horrible fear of choking as well and that is what I did. I also used Enterolab and have gluten sensitivity genes according to them. I also am suspect of them and wish they would publish to gain some credibility. On the other hand, I know I don't want to purposely touch gluten again ever. (Positive dietary response) I DO question whether you can iron out all the gluten and other possible intolerance issues in just a couple of months. But it does seem you should see some changes during that time to indicate if you're going in the right direction. Good luck to yoou.

lisa

We're in the same hood. If you want to PM me, I have plenty of health food store recommendations if you'd like.

Okay, something weird happened there and my response is mixed in with a previous one. I apologize! Hopefully, you can sort it out!

lisa

[CarlaB]

For me, dietary response backed up Enterolab's testing. For those with non-celiac gluten intolerance, conventional celiac testing doesn't seem to work too well. I was gluten-free for quite a while before testing, and the gluten challenge was inadequate .... but I'm not willing to eat gluten again for more testing, it makes me too sick ... if it makes me sick, I have my answer!

I'd try gluten-free and see if it works. Dietary reponse is a valid diagnostic tool, even if Enterolab is not (according to your doctor). The benefit of using this method is no pre-existing condition for medical/life insurance!!