Enterolab Accuracy? - Results Posted

[ryanjohnson]

I was recently tested by enterolab. I've never been sick and never had any issues with any foods. I do have severe season allergies (ragweed, pollen) but no reactions to food ever.

I did the test because my wife was tested positive for gluten sensitivities and dairy as well. Figured we could make meal prep easier if we all were on the same diet. So we got both of our kids tested and myself. Does anyone ever come back negative on these tests?

Here are my results.

Gluten Sensitivity Testing

Fecal Antigliadin IgA 36 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 28 Units (Normal Range <10 Units)

Microscopic Fecal Fat Score: 152 Units (Normal Range < 300 Units)

HLA-DQ Gene Molecular analysis: HLA-DQB1*0501, 0503

Food Sensitivity Testing

Fecal anti-casein (cow's milk) IgA antibody 34 Units (Normal Range

<10 Units)

I was on a gluten diet when tested and drinking milk as well. Not sure if this effected my results.

I showed the test results to my allergist who I've been seiing for over 10 years and he said it was nonesense. He also showed the results to a gastroenterologist who said the same.

I've been gluten free/dairy free for a month now and dont notice any changes at all. except for being more hungry and maybe a little weight loss. I'm 5'11" 150lbs.

I'm just wondering if I should stick with it even if I dont have any reactions.

Skin testing from my allergist resulted in negative reactions to both gluten and dairy. I understand the difference between sensitivities and allergies.

Just wanted to get a response from the community before I went to a third allergist for a 3rd opinion.

Thanks in advance.

Ryan

[Carriefaith]

I have read here on the board that people have got negative results from enterolab. There is a really old thread on it. I have personally not used enterolab, but many others here on the board have.

It appears from the enterolab results that you have a gluten and casein sensitivity, this could mean that you have celiac, or it could mean that you are just sensitive to gluten. However, it does tell you that your body does not like gluten and milk. If you are not happy with these results and wanted a biopsy you would have to go back to eating gluten for awhile, or else you could get a false negative result. Here are a list of symptoms of celiac disease: Open Original Shared Link Some people with celiac have no symtoms at all and still have intestinal damage.

[tarnalberry]

It's a tricky one. Your doctors said what they said because Enterolab isn't accepted by mainstream medicine. Dr. Fine, the doctor who developed the tests and runs Enterolab, has not yet published any peer reviewed studies on the accuracy of his testing method that allow for other doctors to independently verify his methods. That doesn't mean they are wrong, but it doesn't mean they are right either. The fact is that there is no objective scientific study to demonstrate either way. And that is why your doctors said "bull".

You said that you didn't notice any changes on a gluten-free/casein-free diet. Are you 100% positive that you were not getting any hidden gluten or casein? (No soy sauce, nothing with "spices" or "natural flavors" or "caramel color", no soy cheese or rice cheese (they almost all have casein in them), no "non-dairy creamer" or the like? Checked all extraneous products (lotion, soap, shampoo, toothpaste, etc.), including your wife's lipstick, for the items? Verified no cross-contamination by using a shared toaster or shared condiments or when going out to eat?)

If you are 100% positive that you ingested absolutely no gluten and absolutely no dairy, and you saw absolutely no change, then there is one of two possibilities: you're an asymptomatic celiac, or you don't have it. I know, I know... how is that supposed to help! That's the problem with celiac. It's REALLY hard to demonstrate that you absolutely don't have it. Even the gene testing misses a small percentage of people because they haven't identified ALL genes connected to celiac. But proving the negative is just very difficult to do.

Where does that leave you? Having to make a tricky decision. I am not a fan of the Enterolab tests, but only because we don't have independent research to verify both the validity of the tests as well as the appropriateness of the reference ranges. So your low levels, despite being over their reference ranges combined with no symptoms and no changes, just make me say, "Huh... did they calibrate their instruments that day?" ;-) But research has shown that many celiacs ARE asymptomatic. So they wouldn't have any symptoms to get better on the diet. Except the damaged intestines that will eventually lead to serious complications.

It's a hard decision to make. At the very least, if you choose not to stick with the diet, given the detection of the gene, I would encourage you to get tested again (standard blood tests, not Enterolab) in three to five years. You could also look at it, however, and say that your body IS producing antibodies to the gliandin and casein proteins, and that might be reason enough to avoid gluten and dairy.

I'm curious, though, if you have no symptoms, why did you get tested?

[VydorScope]

I hat to tell you this, I realy do... but go back on gluten for at least 3 months, and dont skimp.. eat plenty of gluten, more then usall even. Then get your normal doc (not your allergy doc) to do the celiac disease Blood tests, and possibly the Endocsopy with bipsoy. That will either rule out or confirm celiac disease.

For the Dary, theres a hydrogen breath test you can do thats very well accpted. Talk to your doctor about it. YOu have ot fast for like a day, then they do the test. I do not have exact details here, but its a one day event with very little prep from what I understand.

IF you do not want more test then you have 2 choices..

The safer choice is assume your Entorlab results are CORRECT and live acordingly.

The other option is assume your Entrolab results are INCORRECT and roll the dice

I would not talk to an alergist for either issue, its not in thier field. Thats like talking ot a foot docotor about your hand....just my opionoin

[Rachel--24]

I used Enterolab and just got my results a few weeks ago. I had tons of symptoms which have kept me off work for 2 years. I'm still not totally 100% convinced about the validity of these tests. The thing is prior to my results I was only 94 lbs. and not improving much....in the very short time since getting my positive results and going completley gluten-free I've gained 10 lbs. and am clearly getting better. I've mistakenly eaten gluten during this time and reacted very obviously and also lost 5 lbs. from that one incident (I've gained it back though). The test was negative for caisen and I've been having dairy products (after being off dairy 4 months) the last 2 days w/out trouble. Each day I am more convinced. My numbers were also lower than yours but I hardly had any gluten in my diet for 4 months prior to testing. Here are my results:

Gluten Sensitivity Testing

Fecal Antigliadin IgA 16 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Microscopic Fecal Fat Score: 912 Units (Normal Range < 300 Units)

HLA-DQ Gene Molecular analysis: HLA-DQB1*0301, 0501

Food Sensitivity Testing

Fecal anti-casein (cow's milk) IgA antibody 9 Units (Normal Range

<10 Units)

I had obvious damage due to my high malabsorption score...maybe this is why I was experiencing so many symptoms. All I know is that when I ate a normal gluten diet...I lost weight and was sick even if I was stuffing my face all day long. Now I'm gaining w/out symptoms as long as everything I put in my mouth is gluten-free. I think you could have problems in the future that are just not apparant to you now. I think it would be worth it for you since your family is already on the program...why not join in? If you never have symptoms the damage could still be happening and I'd be concerned about other conditions developing in the future as a result. Like Tiffany said we really can't know for sure about the accuracy of these tests since nothings been published but these tests have not been discredited either. I know they have changed alot of lives for the better...it looks like I'm headed in that direction as well.

[burdee]

I'm obviously an Enterolab fan. When I first suspected I had celiac disease, I was in such excruciating pain that I wanted to abstain from gluten to stop hurting ASAP. I did not want to wait for an appointment with a doc to do a blood test. I ESPECIALLY did not want to 'gluten load' to get myself REALLY sick by leaking gluten antibodies out of my gut and into my bloodstream, because most docs only know how to test blood for gluten antibodies.

However, part of me wanted a celiac diagnosis. So when I read from Elab's website that their tests were sensitive enough to detect gluten antibodies months after I went gluten-free and that they also tested for milk sensitivity (I already knew I was lactose intolerant), I read every word on their website about 3X. I sweated bullets trying to decide whether to put out that much $$ for their tests, because I KNEW my HMO would NOT cover their tests. My PC doc had misdiagnosed my celiac symptoms as IBS for over 10 years. So when I finally decided to do the tests, I decided I would accept as accurate anything the results revealed or at least ask Dr. Fine any questions I had about the results.

Even though I had avoided gluten for several months and used lactaid (lactose free) substitutes for many years before the Elab tests, I still had positive gluten and milk antibodies and other positive celiac disease test results. I was surprised my malabsorption results were lower. So I asked Dr. Fine about my having taken digestive enzymes before that lab test. He said taking digestive enzymes COULD mask pancreatic insuffiency. However, my other results were positive enough to convince me to avoid gluten and dairy and notify my relatives that I had an inherited autoimmune disease and they should also test for celiac disease.

My point is: I thoroughly read the Elab website, posted inquiries about Elab on this website, and considered ordering/purchasing those tests for weeks before I actually ordered the tests. I paid for those tests myself and never expected reimbursement from my HMO. So I committed to accept or at least pursue further explanation of any test results I received.

I'm continually dumbfounded by posts from people who took Elab tests and then questioned the validity of the results or even asked other doctors (who don't understand the logic of Elab's testing system) whether the results were valid. Is this a form of 'buyer's remorse'? Maybe those who question the validity were reimbursed for the test expense by their HMOs??? Maybe they didn't thoroughly read the Elab literature before they decided? Maybe they doubted their decision?? I'm not criticizing or condemning anyone who suspects the validity of their Elab results. I just don't understand how someone would decide to pay big bucks for those tests and then doubt the validity of the results. Please explain ...

BURDEE

[ryanjohnson]

Sheesh. Active board.

FYI: I am negative for Celiacs. Only positive for the sensitivities. I doubt the results for the exact reasons that Tarnalberry Stated.

"Dr. Fine, the doctor who developed the tests and runs Enterolab, has not yet published any peer reviewed studies on the accuracy of his testing method that allow for other doctors to independently verify his methods."

Yes I have been ultra-strict on the gluten and dairy.

Thanks for all the great responses. This is an amazing resource. I'll share my gluten-free bread machine recipie once I get it mastered.

R>

[Rachel--24]

I'm continually dumbfounded by posts from people who took Elab tests and then questioned the validity of the results or even asked other doctors (who don't understand the logic of Elab's testing system) whether the results were valid.  Is this a form of 'buyer's remorse'?  Maybe those who question the validity were reimbursed for the test expense by their HMOs??? Maybe they didn't thoroughly read the Elab literature before they decided?  Maybe they doubted their decision?? I'm not criticizing or condemning anyone who suspects the validity of their Elab results.  I just don't understand how someone would decide to pay big bucks for those tests and then doubt the validity of the results.  Please explain ...

BURDEE

<{POST_SNAPBACK}>

I can explain this one...

I was in a situation where I was becoming desperate. Every test my HMO ran in the last 3 years came back normal including their tests for malabsorption which I to this day cannot understand. I was clearly not absorbing. The celiac disease tests they ran were also neg...although I may have messed up the results by going gluten-free 2 weeks prior. I cried when I got those results because I was so sure they'd come back positive and I was already feeling a little better. I was devastated and dissapointed. I hadnt done any research on the subject so wasnt aware about false negatives when not on gluten...etc.

Earlier this year I realized my HMO just plain sucked and while my health was deteriorating they were clearly going to do nothing for me. I started shelling out the big bucks months ago when I decided to see a doc outside my HMO knowing I would not be reimbursed for any appts. or tests run. Thinking I didn't have celiac disease but knowing I was having serious problems with foods that didn't show up in standard allergy tests run by my HMO I paid big $$ for delayed food sensitivity tests. They tested over 100 foods and from what I'd read most people come back positive (like Enterolab) for several foods. My results came back with NO high reactions to ANY foods. Once again...devestated and dissapointed and $350 down the drain. Since I showed no sensitivity to wheat in the allergy test I thought this verified the neg. bloodwork I'd had previously.

Next I decided I must have Candida...started the diet of meat, veggies and fish. Miracles happened and I thought I was on the road to recovery. Spent lots more $$ on antifungals and supplements only to find myself getting worse. I went up and down 4 months like this. I was desperate again...asked my doc to order tests for candida/parasites..etc...so I could know for sure why I wasnt getting better. Another $350 but I *needed* to know. I was worried these would come back neg. too. I *wanted* to have candida because I was so desperate for an answer.

I'm off work 2 years now so its not like I have $$ to throw around but I wanted *something* to come back positive. It was bound to happen eventually. Also I had people close to me wanting answers too. I probably wouldn't have had all these tests run on my own accord but I was given the $$ and talked into it because I'm fortunate to have very generous loving people in my life who wanted me to have answers and get better.

When I came to this board I was still awaiting the results of my Candida tests. I think it was Kaiti who mentioned Enterolab to me. I did not hesitate....I went right to the site w/out reading all there was to read I quickly oredered the full panel (this one I payed for myself ) I think I didn't want to wind up talking myself out of it by hesitating, reading, and "sweating bullets". I've been there before so I laughed when I read what you wrote.

I think I was just basically at the end of my road...I was at a dead-end and felt in my gut that I either had Candida or celiac disease. After my first posts here it was mentioned that my original bloodwork was innacurate if I'd been off gluten. Since Enterolab was my ONLY option (being off gluten 4 months) I didn't spend time wondering if they were the *best* lab...I just knew they were all I had.

It was only after I had already purchased the tests that I really started to research. I never found anything discrediting Enterolab which gave me confidence....plus all of the supporters on this board such as yourself. The fact that the vast majority come back with positive results leaves me wondering though. I chose to take these results seriously due to the fact that they were the ONLY ones to ever come back positive. My candida results were negative...Thank God I had...at the spur of the moment ordered those Enterolab tests. If I hadnt I would have been devastated by those negative results.

If it would have been someone else's money being spent on the Enterolab tests I would've sat there sweating bullets and maybe not getting tested at all. It just felt right and necessary for me at that exact moment in time. I didn't let that moment pass w/out ordering the tests.

Sooo...was I convinced that Enterolab was the "real deal"? Absolutely not...I just decided if the results gave me reason to believe I DO have gluten intolerance after all...then I'd change everything in my life to accommadate going gluten-free 100%. I had nothing to lose. $350 seems extremely small to me considering the tremendous amount of money I've spent trying to find answers for 3 years.

If the malabsorption part of the test had come back normal I likely would've doubted the whole thing. I KNEW I had malabsorption and the fact that they scored me at 912 gave me reason to believe the overall results and advice given.

Ultimately the results of the diet will be the *real* proof. The reason I didn't just try the diet w/out being tested is because my health was very poor. I had already tried many diets/treatments which only lead to dissapointment. My insurance ran out just this month since I've been off work too long and I'm now having to pay for that as well. I literally couldn't afford to change all of my utensils, toaster, cosmetics, shampoo, etc. and just "hope" that this might work. I was running out of time..need to get back to work and back to my life. I didn't want to waste more time trying a new diet if something else was causing me to be sick. I'd already wasted 3 years.

[Nevadan]

I, too, recently was tested by Enterolab after self-diagnosing my gluten sensitivity by alternating gluten-free/non-gluten-free and seeing some symptoms respond accordingly. [i got onto this gluten thing because I have osteophorosis and I saw an article that stated that osteo and celiac are often present together.] I had the Enterolab tests done more out of curiosity after reading about their testing procedures. I'm more a believer in their genetic DNA testing (I think I read they send your samples to an outside DNA lab) since DNA testing has become pretty reliable. My DNA results say I'm not likely to ever develop celiac; however, I have a double set of "gluten sensitive" genes (HLA-DQB1*0602,0602: Serum equivalent DQ1 subtype 6) so that was consistent with the self-dagnosis. My other Enterolab results are: Fecal Antigliadin IgA = 22, Fecal Antitissue Transgltaminase IgA = 17, Fecal Fat Score = 84, Fecal anti-casein IgA = 19

Here are some symptoms I have and their responses to being gluten-free/CF for ~ 3 months.

Short term symptoms:

Abdominal bloat, gas, and chronic constipation: all gone (recur when glutened)

Irritated skin patchs on upper cheek: almost gone (flare up when glutened)

Skin splits on finger tips: almost gone (seems to be related to casein)

Long term symptoms:

Diagnosed osteophorosis 5 yrs ago at 55 yr old (I'm a male): so long term and slow reacting that this will probably take years to see any conclusive results

Marginal anemia all my life: I plan on doing the blood testing for red blood cells every 6mo with the first around the end of this year - hope to see results within 1 yr.

Mild peripheral neuropathy (tingle/numbness in my toes): seems to be getting better but still too soon to tell. (This is another slow responding problem)

Re the Enterolab results, I see some glaring inconsistencies:

1. If my osteo and anemia are due to malabsorption, then why the good malabsorption score from E?

2. If anti-Tissue transgltaminase IgA is really very specific for celiac disease and lack of a DQ2 or DQ8 almost guarantee no susceptibility to celiac disease, then why are my Entero aTTg test results high? [i asked them about this and got what I consider a "run-around" answer which I have recently posted here on another thread.]

One thing I've found helpful is to read "Dangerous Grains" by Braly which focuses more on the effects of non-celiac gluten sensitivity. From the book contents and lots of web searching, I've concluded that non-celiac GS is as bad, or even worse, than celiac disease - instead of suffering measurable intestinal damage, you are prone to an abundance of subtle, nasty neurological autoimmune diseases.

Sorry for the long ramble, but I hope this somehow helps. In my opinion just based on your (and my) DNA results, continuing to eat gluten has very high risk. One thing I found useful is to Goggle your DNA results: HLA-DQB1*xxxx and HLA-DQB1*yyyy where x and y are your DNA resuls. You will find links to lots of medical research which you may find very sobering.

Bottom line with respect to Enterolab, I admit to having very low confidence in all of Enterolab non-DNA testing until they publish their methods and are peer reviewed. IMO, They are doing no one (except their bank acct) any favors by delaying peer review. Trying to be exclusive also limits the availability of their testing procedures, in case they are valid, to the curious, desperate, etc. [P.S. I'm a retired scientist in case you are wondering about my stance on peer review.]

Good luck.

George

[Rachel--24]

George,

Have you looked into other reasons for your osteo.? I'm thinking you probably have since you seem like one to do lots of research...like me. But just in case...overactive thyroid can cause osteo. and malabsorption as well. I'm sure there are plenty of things which can cause it but I'm only aware of the thyroid link since I have Graves disease.

[bmorrow]

Ryan,

Have you received the results of your children's tests?

I spent three years trying to determine what was wrong with me. I went through two surgeries and visited several doctors, including three GI doctors, but none of the doctors could do anything for me. I was diagonosed with Gerd, gallstones, severe anemia, IBS, Fibromyalgia, ulcers, migraines, a severe rash, chronic gastritis, pneumonia and hypogylcemia. I had lost 20 lbs. and still losing, when a business associate of my husband saw me and ask him what was wrong with me. He made the comment that I looked like his wife did several years ago, before she discovered that she had Celiac. My husband came home and told me to ask the doctor about testing me for this disease. I had never heard of it!

I went to my family doctor and he told me that it was a childhood disease, and not to be concerned with the possibility of having it. He did refer me to another GI doctor. While I was waiting for my appointment, I started researching Celiac and gluten intolerance, and I discovered EnteroLab. I decided to do the testing, even though, I was very skeptical of anything on the internet. I tested positive through EnteroLab and had my results when I went to the new GI doctor. He looked at the test results and was convinced that I had Celiac, but he still wanted to do his testing. I went on the gluten-free diet a couple of weeks before the testing. I didn't realize that this could effect the test. My blood tests were negative and my biopsy was inconclusive, so I went off of the diet.

In the next few weeks I developed severe diarrhea, so my GI decided that it was time to send me on to another doctor that he considered the best for chronic diarrhea issues. This doctor was at Baylor Medical Center. Neither one of us realized that this doctor had worked with Dr. Fine in research and as a staff member at Baylor.

Dr. Schiller told me that he no doubt that I had Celiac and that he had complete confidence in Dr. Fine's test results. I was completely shocked and upset that he thought that I had Celiac. He also discovered that I had microscopic colitis. I did not want to believe those test results. I have now accepted Dr. Fine and I am getting much better.

I don't know what you should do, but I do believe that you should consider these tests as being valid, and not dismiss them completely.

[Nevadan]

Rachel,

re other causes for osteo, you're right - there are several, many genetic. Things like my thyroid test normal. Osteo runs in my family - my older brother has it (his dx keyed me to get tested) and one of his sons has it also. So gluten may not be related at all, but I thought it was worth a try since anemia also runs in the family and I have had a mild case forever - my doc's look at my history and say "don't worry about it - your results have always been low", but I'm not satisfied with that approach. My brother developed a serious case of anemia as he got older much like our mother did. Osteo with anemia seem to have a high probability of being related to some kind of a problem with the body not being able to utilize its nutrients which fits with celiac disease or gluten sensitivity(GS). I think anemia improvement may be one of the most hopeful proofs of the benefits of going gluten-free, but it will take several months or even yrs. Meanwhile I feel lots better just getting rid of the gas/bloat/constipation - enought to justify for me to remain gluten-free.

I value the DNA testing results and since I have a double DQ1, I know both parents had at least one DQ1 and my brother has a good chance of having at least one also, and hence his son. It all kind of hangs together but the proof will be in a measurable improvement over the next yr or so.

From your previous posts, I think I remember that your DNA is similar to mine - celiac disease not likely, but gluten sensitive anyway. From doing a lot of web searching, I've found a couple of research papers with evidence that gluten sensitivity may hinder the body's ability to utilize some of the ingested nutrients independent of small intestine damage, so this may be significant for us. Also I believe that it's pretty well documented that gluten can lead to a "leaky gut" which may set us up for auto-immune diseases in the future.

Meanwhile, I hope you continue to see improvement.

For the Enterolab fans in this thread, even though I consider their testing unproven until verified by peer review, that does not say it is erroneous - just unproven. Given the difficulty in getting a celiac disease or GS dx in the US, even if Entero were fabricating their results, they are probably providing a beneficial service. It would probably be better to err on the safe (gluten-free) side than otherwise - and the gluten-free diet is rather healthy by almost any measure. For me the proof of sensitivity was in the self-testing; however, since there is plenty of evidence of celiac disease and GS without any observeable symptoms, that leaves many people without any measurable way to self-diagnose while leaving them potentially vulnerable to longterm health problems. I'm a believer in preventative medicine wherever possible. Hence I prefer to believe in the DNA testing and to look at the research that is being done to relate the GS results to some pretty bad stuff. Let's hope Enterolab publishes their methodology soon so we can all have more confidence in their results.

George

[skbird]

Sorry for the long ramble, but I hope this somehow helps. In my opinion just based on your (and my) DNA results, continuing to eat gluten has very high risk. One thing I found useful is to Goggle your DNA results: HLA-DQB1*xxxx and HLA-DQB1*yyyy where x and y are your DNA resuls. You will find links to lots of medical research which you may find very sobering.

No kidding! One thing that keeps coming up for one of my genes is narcolepsy. Funny, I definitely don't have that... so not everything correlated (however highly) with genes is something you will be afflicted with. But both of my genes are correlated with cervical cancer, fun. Also, both are associated with lupus and other connective tissue diseases. That makes some sense when there's already evidence that gluten intolerance is autoimmune and those diseases are autoimmune as well.

Anyway, it's interesting knowing that much about myself. Sometimes I think it would be neat to have a whole gene map for myself, but knowing that much might drive me insane. At any rate, we don't all present or trigger everything our genes are capable of.

Opting for improving health is what I am doing with this knowledge. My test results from Elab were negative technically, but just barely so, and I had been gluten free for 5.5 months and have a positive dietary response so I stick with it anyway. Not Celiac but don't need that gluten stuff anyway.

Stephanie