Are There Any Down-sides To Enterolab ?

[Susan Kelby]

I'm just getting started with testing, and I've read oodles on the forums yesterday and this morning - thank you all for sharing so much info ! From what I've read, Enterolab testing seems to be the most definative, since blood tests can miss early damage, and endoscopy/biopsies are a hit-or-miss whether or not they sample where you actually have damage. Plus, both the blood and the biopsy only work if you're eating gluten, which I'm just getting started to avoid.

So, is there any downside to Enterolab ? Why in the world doesn't everyone test this way ? The only thing I can think of is that doctors are not involved, but since doctors can't help celiac anyway, who needs them ? Is it a good thing to NOT have celiac in my medical records, or a bad thing ?

Thanks for all the great info. It really, really helps.

[jayhawkmom]

My reason for not going through Enterolab has been the expense. However, I'm starting to think I might go that way with my little 11 month old. His doctor ordered him "gluten-free" as preventative measure, because he IS showing signs. I don't want to put him through any invasive testing,... and the stool culture could answer some questions without BEING invasive.

But, I have no desire to shell out that kind of money for the tests. =(

[happygirl]

I'm just putting this out there, so no one get mad at me--- I'm not "bashing" enterolab by ANY means.

In general, the medical community does not fully accept enterolabs method of testing. It is different than the standard (bloodwork/biopsy) and many doctors don't "believe" their results. There are some doctors who will give you a dx of Celiac/gluten intolerance based on enterolab, but the vast majority won't. His method is either highly innovative or.....well, who knows what the alternative is. That being said, what matters is how you want to deal with this. Do you want/need the official bloodwork/biopsy diagnosis to feel comfortable going on the diet? Are you prepared to deal with doctors who question your diet and potentially dismiss other problems? Or are you comfortable listening to your body and seeing how things go? Everyone reaches different conclusions to these answers, and there are many factors that come into play. It might be easier for someone who is horribly sick to cut out gluten, get better, and then its not as important to have an official dx---they have OBVIOUS results. On the other hand, depending on the symptoms, some people really need to 100% know that they have Celiac in order to be motivated to stick to the diet.

If you have a dr who is willing to do at least the bloodwork---and, that you have insurance----it might not hurt to do both. Or, do the bloodtest first, and past on your results, go from there. Your blood tests might be positive for all we know.

I hope this helps as you sort through things! Good luck.

[Susan Kelby]

I'm just putting this out there, so no one get mad at me--- I'm not "bashing" enterolab by ANY means.

In general, the medical community does not fully accept enterolabs method of testing. It is different than the standard (bloodwork/biopsy) and many doctors don't "believe" their results. There are some doctors who will give you a dx of Celiac/gluten intolerance based on enterolab, but the vast majority won't. His method is either highly innovative or.....well, who knows what the alternative is. That being said, what matters is how you want to deal with this. Do you want/need the official bloodwork/biopsy diagnosis to feel comfortable going on the diet? Are you prepared to deal with doctors who question your diet and potentially dismiss other problems? Or are you comfortable listening to your body and seeing how things go? Everyone reaches different conclusions to these answers, and there are many factors that come into play. It might be easier for someone who is horribly sick to cut out gluten, get better, and then its not as important to have an official dx---they have OBVIOUS results. On the other hand, depending on the symptoms, some people really need to 100% know that they have Celiac in order to be motivated to stick to the diet.

If you have a dr who is willing to do at least the bloodwork---and, that you have insurance----it might not hurt to do both. Or, do the bloodtest first, and past on your results, go from there. Your blood tests might be positive for all we know.

I hope this helps as you sort through things! Good luck.

Thank you so much - this is exactly what I was wondering. I'm not terribly concerned with what doctors think - I like my current doctor, but he's not God and I've had my share of losers and incompetants. I am still trying to get through to my doctor for the blood tests; as I've said, I like him and I'm sure he will order the tests. And since I just stopped eating gluten yesterday, as long as they get me in soon, the tests should still be as accurate as they ever are. But if the blood tests are negative, then off I go to Enterolab.

And I was wondering about how accepted they are among the medical community - they are not mentioned at all (unless I missed it) in the FAQs for Celiac.com - they only talk about blood and biopsies. So I am interested in anyone expressing doubts.

And as far as needing validation to go on a wacky diet, I feel so crappy that I would be willing to try just about anything to feel better. I followed the Adkins diet STRICT for two years (all my tummy troubles went away, which is what is making me think wheat may be my problem) so I know what it's like to eat differently than everyone else.

Susan

[happygirl]

Just to put this out there---if you are not eating gluten, the chances of your bloodwork being indicative of Celiac are highly decreased. The blood tests are testing your level of antibodies in reaction to gliadin. If there is no gluten, your bloodtests are not necessarily accurate. IF you want as accurate of a bloodtest as possible, continue eating gluten, call your doctor, tell him you want the bloodwork drawn (the FULL Celiac panel) ASAP and then as soon as you leave from having it done, you can start the gluten-free diet (that is taking into account that you do not want the biopsy, regardless of your bloodwork. If you want the biopsy, you have to continue eating gluten).

Most doctors, including Celiac specialists, do NOT accept enterolab's results. However, there are some board members' whose drs do. There are many drs who come out and say it is inaccurate. You are lucky if you even find a dr who accepts positive bloodwork (w/o a positive biopsy) as proof enough for a celiac diagnosis, let alone some "stool sample from some lab."

I hope this helps. I was given incorrect medical advice by a GI (go figure) and was told to go on a gluten-free diet BEFORE my biopsy (which I did for one month)...and then magically, my biopsy came back negative. I just wish someone had told me all the things I know 'now' back then (two years ago). If you want accurate blood and/or biopsy, you have to be eating gluten (and not just the day before the biopsy, unfortunately!!).

Enterolab --- depends on who you ask. On the other hand, there are NUMEROUS people on this board who have been given answers to their health problems by Dr. Fine. Who's to say----the medical community blasted the doctors who introduced the idea that ulcers were caused by a bacteria (h.pylori) instead of stress or all the other ideas. And what do you know? It was finally proven that most ulcers are caused by this bacteria. Innovative ideas (and methods for testing) take a long time to gain official acceptance in the medical community and beyond.

[Nancym]

Dr. Fine's work will one day be accepted and emulated. I had the marvelous opportunity to hear him speak in person. It takes a long, long time to change practices in medicine. I took 10 years (and a lot of reeducation effort from the NIH) to get doctors to accept that ulcers are caused (often) by a bacteria. The poor Aussy who discovered this was laughed at in the US.

Right now the current method of catching problems with gluten is to wait until it hits the blood stream and you develop an autoimmune reaction to tTG (which Dr. Fine said is something the bodies needs to use in every cell in order to heal properly) and your intestines are so badly damage that these antibodies escape the intestines are are circulating in the blood stream. Yikes!

Anyway, read Dr. Fine's CV. He is a researcher and has been trained by one of the most recognized doctors in GI. And he's got a really good essay and a slide show from his talk up. After hearing how he found what he discovered and how he has dedicated his life to helping people, I'm more on the bandwagon than ever. He said he'll be submitting his work to be published at the end of the year, so probably in 2007 it'll get published.

Also, I sent email and asked that Dr. Fine's speaking schedule should be published (he shouldn't be missed!) and they said they're going to do it on his intestinal health web site (intestinalhealth.org). I hope they get around to it soon!

I think the big stumbling block for him is going to be how... forgive the pun... ingrained wheat is in our civilization and how many people have an antigenic reaction to it (30% according to his random, guy off the street, testing)

[AndreaB]

Susan,

If your doctor is willing to do the blood test soon than go ahead and do that. I had allergy testing done first (see sig) and went gluten light in April. I talked to my doctor in May and she was willing to do a blood test but since I had only been eating oatmeal/oat products occassionaly and drinking rice dream milk which has a barley enzyme in it. I cancelled that appointment since I was highly doubtful of there being antibodies with being gluten light for so long. She was willing to do the test since I had a few minor problems on a few occassions in the past. I then went through enterolab (there is an article on celiac.com which is how I learned of it), and found that 3 of 4 of us tested have an active intolerance to gluten. We have been gluten free since June.

I believe enterolab is an above board, accurate lab. They are not generally accepted, I believe, because it is a newer method. If you read on old enterolab posts you will find a poster (Cheryl I think) that posted a recent slide show of Dr. Fines. Also, Nancym or Nantzie have seen Dr. Fine recently and have said he plans on getting his stuff published next year. I am very happy with them and thankful to have caught this before we had major damage done. My oldest son, as is, has/had mild malabsorption, he has 2 celiac genes. Dr. Fine tests for more genes than other labs which is nice too.

Other things I have read is that some are denied insurance if the have a preexisting diagnosis of celiac. You're current insurance can't refuse you, it's just if you ever need to change that it could be a problem...or if you become self employed. I didn't even submit a claim with my insurance for enterolab but they do give you the codes to submit to see if your insurance will pay any of it.

All is all it is a personal decision. Welcome to the board!

[PatrickCA]

I think the big stumbling block for him is going to be how... forgive the pun... ingrained wheat is in our civilization and how many people have an antigenic reaction to it (30% according to his random, guy off the street, testing)

I completely agree that this is the heart of the problem. And Laura, I agree with all that you said - well said.

As I recall, this figure of 30% pertains to randomly selected individuals having immunologic reaction to gluten (i.e. anti-gliadin IgG and/or IgA). Thus, this would imply to the average Dr. that the specificity (in the vernacular) of the test must be too low - because many of those 30% are not complaining of any problems.

But, say you opt for the complete panel and have i)anti-gliadin AND ii) anti-tTG, AND iii) a celiac/gluten sensitive gene, and for the sake of argument, probability of each is (I don't know the probability for anti-tTG in the GI tract):

30% x (15%?) x 40%

Then, by this more stringent criteria about 1.8% of the radom population would have celiac. This is getting very close to best estimated numbers (1 per 100) in some random populations. BUT, as many here painfully aware anti-gliadin can be enough to cause serious problems in some people.

If 30% of people should actually go gluten-free, I can hardly imagine the enconomic impact! General Mills could become like big tobacco.

But, to be clear, I also think Enterolab is doing something very important, which will become generally recognized. They might overdiagnose a bit. But, if people feel better gluten-free and worse after a "challenge" they'll be believers.

After postive enterolab tests, I'm gluten free for only two weeks. And I'm not feeling normal yet....so (as Laura points out) I'm having mild doubts about whether the tests are accurate and wondering whether all of this effort is worth it. But, many have said it may take a couple months or even a year to heal. So I'm going to try to stick with it.

Hope things go well Susan, and that you get some answers.

[daffadilly]

laura & Nancy I must repeat the Well Said from Patrick.

Patrick, I think that they are going to find that it is in fact 30% of the population.

In my office building alone there is me & a guy about 35 gluten-free for 2 years, & a lady in the office next to him (long curly red hair skinny as all get out) that kept listening to us talk & after I talked to her & found out that she has IBS, bloating stomach, gas, moodiness, she went gluten-free & is reading Dangerous Grains & is taking a B12 everyday & is amazed at how much energy she has now & keeps looking at me & her office mate like we have saved her life, (her 19 YO daughter is in the hospital today with a bladder infection) & another guy in the office knows about celiac because his 84 year old mother was diagnosed with it!!!! Our plant lady is now gluten-free & even her hyper nervous stuff is getting better, really almost gone & the stabbing pain in her side is gone, she thinks I was somehow put in the right place to give her the message, she is amazed that she can sleep at night - all this because she saw my lunch plate of fruit & nuts & meat one day & asked me what I was eating. Now she has all the people at her apartment complex researching celiac and they are amazed or so she reported to me last week.

Then there is my boss age 45 double DQ1 (enterolab, I bugged him until he got the test), with his mouth ulcers, acid reflux & a few other little uh issues. Then there is the other partner that just turned 50, lifelong "health problems" eats pretzels all day & is now having a flare of his problems. I feed these guys a gluten-free lunch everyday unless they slap a piece of bread on something , but they are not convinced that they need to be gluten-free yet. I told them that at least they know about it & I give them a few more years for their health to worsen.

the lady that I met at a scrapbook store is now gluten-free as is her grown daughter, this lady had her fuzzy vision go away, her dizzy spells, migraines, & got an increase in energy - she is on disability for migraines, so now I think she is afraid that I will turn her in that she is well !!!!! Just think how many people like her are out there!

My great great grandfather's (I am not sure if that is enough greats, but you get the idea ) brother, English/Irish, has a web site, he had 12 children and now there are 14 thousand descendants. There are maps on line that show the Irish migration in the United States & the numbers. Also, I think that a lot of the ones that came to this country were the people that were struggling because of centuries of health problems & early deaths (because of the celiac genes) in their families which led to less possessions and the desire to seek a better life.

& it is my personal observation that people with these celiac genes like other people with the same genes and seem to invariably marry one.

in the case of my family on both sides carried the genes, & I think almost my whole family is celiac but does not want to admit it.

One Sunday afternoon I was in Whole Foods helping an old friend of mine that has now got herself & her aunt on a gluten-free diet & swears her mom suffered with DH her whole life & no one ever knew what it was & one of the cancers associated with celiac runs in her family- she did her own research on the computer, anyway I was basically holding a gluten-free cooking class in the alternative flour aisle with four other women that were either gluten-free or had a kid gluten-free.

It just seems to me that I see a lot of people with celiac - gluten intolerance - I really do not differentiate because to me it is all the same thing. It is just my personal observation that it is going to turn out to be 30% of the population in general, excluding the people who have immigrated here from South & Central America.

well I had to edit - somehow this popped on the post I already had so darn i guess I do not have a short post yet.

just to prove I can do a short post

you do not have to have a doctor order the enterolab test. You can just call or email them & they send you the kit & you send it back to them in the enclosed packaging.

[tiffjake]

I just want to throw in that if you are going to have blood work done at your docs office, do NOT stop eating gluten! I had blood drawn, and then went in a week later for the results, and the lab had not ordered the right tests, so they drew again that day (but in the mean time, I had already gone gluten-free, because I had already had the Lame Advertisement and EnteroLab tests!) and my docs bloodwork came back "boardline" after just one week of gluten-free. He agreed with me that one week gluten-free should have been "low" if I didn't have a gluten problem, and with my other tests, he decided to label me "gluten intolerant".....then I found another doc.....but my point is that one week will make a difference!!!!!!

Oh, and I liked going through EnteroLab. It was expensive though....

[Susan Kelby]

Thank you all for your comments. I had blood drawn yesterday, but unfortunately my doctor only ordered IgA and IgG. We tried to contact him to get EMA and ARA, but he had already gone home. The lab tech was great and drew extra blood so that IF we can get him to order the other tests and IF the only lab they send out to will perform them, we're all set.

Today will be my first all-gluten-free day ! Actually, it doesn't sound that bad after doing the Atkins diet: I can have potatoes !! I can have fruit ! I can have rice crackers and Pamela's cookies !

I would imagine that regardless of my blood tests, I'll still end up doing the Enterolab testing, and also have my daughter tested. I think it's really important to know if we're carrying the genes, and also to put her on the right path BEFORE she has 40 years of tummy troubles. Also, I'll be very curious to see if gluten-free helps the constant runny-nose allergies that we both have. It would be nice not to have to take 3 meds a day for allergies !

Thanks so much, everyone.

Susan

[PatrickCA]

daffadilly - that is amazing! Sounds like you have been a mover n' shaker getting the message out! That's great.

[happygirl]

I just want to say that THIS is why this board exists---to provide support, knowledge, and personal experience to those who need it. I sure wish I had found it sooner! Susan, I certainly hope that this info has helped you. Please keep us updated---call your dr. back on Monday and ORDER him to run the full panel

The full panel, according to Dr. Green's book, includes:

IgA endomysial antibodies (EMA)

IgA tissue transglutaminase (tTG)

IgG tissue transglutaminase

total IgA antibodies

IgA antigliadin antibodies are also usually run, but Dr. Green notes that they lack sensitivity (I think esp compared to the other tests). But, he says "However, IgA antigliadin antibodies may contribute to the dx of some patients."

[happygirl]

"After postive enterolab tests, I'm gluten free for only two weeks. And I'm not feeling normal yet....so (as Laura points out) I'm having mild doubts about whether the tests are accurate and wondering whether all of this effort is worth it. But, many have said it may take a couple months or even a year to heal. So I'm going to try to stick with it. "

Patrick, welcome to the gluten free world! Two weeks is a very short time (although, it seems like a LIFETIME!) to be gluten free, in terms of letting your body heal. Mine was a very gradual process....kind of like steps. I realized that I was very, very sensitive to gluten so once I REALLY went gluten free (i.e., different containers for condiments so now chance of cross contamination, only making my food), I really began to improve. I don't know where you are in terms of the learning curve of gluten free, but are you using all new butters and mayos, etc (so that there are no "hidden" crumbs)? Have you checked your shampoo and such? Are you eating out a lot? Let us know if we can help. Hopefully, your health will continue to improve.

[Nancym]

Then, by this more stringent criteria about 1.8% of the radom population would have celiac. This is getting very close to best estimated numbers (1 per 100) in some random populations. BUT, as many here painfully aware anti-gliadin can be enough to cause serious problems in some people.

But, to be clear, I also think Enterolab is doing something very important, which will become generally recognized. They might overdiagnose a bit. But, if people feel better gluten-free and worse after a "challenge" they'll be believers.

Dr. Fine has also kept statistics on how many people reported positive changes in their health after going gluten free. Wish I had that slide. It was pretty astounding. Even some of the ones that didn't test positive (Maybe IgA deficient?) felt better.

Stick out your gluten-free trial a while longer. Some of my symptoms took a lot longer than 2 weeks to clear up. It wasn't until I also got off Dairy that I really started to feel a lot better. Well, going gluten-free took care of my stomach cramps and painful diarrhea (IBS) but I've still had some lingering BM issues which is either due to something else I'm ingesting or might be due to my autoimmune disease. :\

Daffadilly, good job! You are sending out some healing vibes there. I can't believe you've been so effective talking to people. Every time I try people's eyes glass over and their attention wanders.

Oh yeah, I wanted to mention that the only people Dr. Fine says don't seem to have issues with gluten are the ones with double Dq4 genes. Which... I think was Asiatic. That is interesting since I believe they don't really eat much wheat.

Today will be my first all-gluten-free day ! Actually, it doesn't sound that bad after doing the Atkins diet: I can have potatoes !! I can have fruit ! I can have rice crackers and Pamela's cookies !

Heh! I've been low carb for many years (with a few exceptions). Funny thing is so many of the low carb products are made with wheat GLUTEN! That is, they take out all the parts of the wheat that are starches or sugars and leave the protein that makes us sick. Gosh! No wonder I was toilet bent double from cramps all the time.

Anyway, I've gone more towards paleo type of eating. I eat fruit, veggies, meat, fish, poultry and nuts and sometimes legumes. I probably shouldn't be eating the nuts and legumes though, I think they're doing a number on my gut. *sigh*

[daffadilly]

I would imagine that regardless of my blood tests, I'll still end up doing the Enterolab testing, and also have my daughter tested. I think it's really important to know if we're carrying the genes, and also to put her on the right path BEFORE she has 40 years of tummy troubles. Also, I'll be very curious to see if gluten-free helps the constant runny-nose allergies that we both have. It would be nice not to have to take 3 meds a day for allergies !

Thanks so much, everyone.

Susan

Susan, I encourage you to go easy on those gluten-free treats at first. I hate to be the bearer of this news but with the runny nose stuff it might be dairy. You should probably give up dairy at the same time as gluten. Read Dangerous Grains book. But the good news with dairy is that you might be able to tolerate it later if it is a problem now. Also with dairy once you are stable with the symptoms etc you might be able to have all dairy or just some, like hard cheeses but not milk.

I had to give up dairy one time before I knew anything about celiac (I have allergies) but then had been eating dairy for a few years then when I went gluten-free (2 years 3 months) I had to delete it again, last year I went back on dairy & now I am off it again. Now it not only messes up my sinuses but it gives me a really bad earache. It takes a couple of weeks to get over missing it. Then it is just like not eating wheat - you do not miss it & are not even tempted to have it.

[Mayflowers]

Then it is just like not eating wheat - you do not miss it & are not even tempted to have it.

So when does this happen? I've been wheat free and gluten free for a month and I still have cravings, daily.

[daffadilly]

Mayflower, it does go away - really, some say it takes three weeks to get over a craving - so maybe you are on the edge you might also still be grieving for the change in life style. Do you have a hobby?

Are you eating a variety of things? Have you found some new comfort foods?

Are you indulging yourself in some good things - like some great fruits, shrimp, lobster, nice steaks, wild salmon?

For breakfast this morning I had fresh pineapple (I treat myself & buy it already peeled at the market), perfect strawberries from CA, huge blueberries from Canada, a perfect banana, & some fresh shelled pecans. It was so satisfying & the plate was so gorgeous I started to take a photo of it!!!

lunch I munched around on a little salad, couple little pieces of Canadian bacon - I love that stuff I get several packages at a time & throw a few packages in the freezer, some walnuts & grape tomatoes - I was saving room for dinner

dinner was stir fry, fresh large gulf shrimp, snow peas, onion, red bell pepper over rice

I just told this guy at the office yesterday about the PB & jelly breakfast - 2 years gluten-free & he has not had it & was excited to hear about it & he wondered how I came up with the idea, I am sure a lot of people eat this but I will list it for you and any other new person. take a white corn tortilla & heat it up in a skillet with a little butter (if you can do dairy) or a little extra light olive oil or grapeseed oil, put on a plate, put on a row or peanut butter & some jelly on top of that & a piece of bacon or whatever meat you are having & roll it up & enjoy!!!!!

For those that can do dairy, take the heated up white corn tortilla & put some cheese on it, minced onion, cilantro, piece of bacon or ham, roll up - enjoy.

Hang in there Mayflower, & let us know if there is something in particular that you are craving maybe we can come up with a substitute.

[PatrickCA]

I realized that I was very, very sensitive to gluten so once I REALLY went gluten free (i.e., different containers for condiments so now chance of cross contamination, only making my food), I really began to improve. I don't know where you are in terms of the learning curve of gluten free, but are you using all new butters and mayos, etc (so that there are no "hidden" crumbs)? Have you checked your shampoo and such? Are you eating out a lot?

Thanks LauraJ. It was encouraging to hear that you didn't heal all at once. - as strange as that sounds. The shampoo thing seems (at first) bizarre. I heard the same thing has helped others here, so there must be something to it.

Did you ever get a mainstream doc to either get positive blood work for you, or to believe your enterolab results? Or did you decide it didnt' matter?

I'm relatively new to this whole thing (about 6 weeks, iterrupted by a gluten challenge having nasty effects -my first post) and getting more watchful, to the point of being freakish. My neuro sx (very similar th those described in the very interesting "The Gluten File") were a big enough problem for me, that I am motivated to stick to the new diet for now. (I've also lost a couple lbs) I do eat out a fair amount, and know I need to be more careful. And if dairy is truly a contributor, I need to eliminate butter. I'm going to really have to change my ways. A lot of things that are gluten-free probably still were cooked in quite a bit of butter. Mmmmm...

I'm starting to do the large batch cooking thing so that I can survive through the week. I think this will help. I also just ordered a couple books about gluten and celiac, and look forward to reading up on the immunology of celiac disease. After two monthes of waiting, I'll see an internal med dr week after next, then referred to a GI specialist, then probably get tests which may be negative. But, I don't feel like going back to gluten at this point.

Down the road I'll probably have to gluten challenge myself (a second time) to believe with confidence that gluten and/or casein are major culprits.

I guess I'm a 'gluten for punishment'.... (couldn't resist, I wonder if that has been taken as a "handle" yet)

[Mayflowers]

Thanks much for the suggestions and support! I'm also milk intolerant so I've been craving

cheese. I never was an ice cream lover but I like cheese and yogurt.

[Nancym]

So when does this happen? I've been wheat free and gluten free for a month and I still have cravings, daily.

I associate wheat with abdominal cramps and remember how I'd bloat up right after having something innocuous, like a cookie. Eventually I got to the point where I look at things I used to love, like bagels and they look like poison to me. It's just a mental game you have to play with yourself.

Patrick, the Neurological side effects of gluten take longer to go away than things like the IBS I was having. Stick with it! Take some vitamin B supplements too.