Monday, August 21, 2006

Testing for Celiac - Stool testing vs. Blood testing

I wondered how many persons out there have been tested for gluten sensitivity / Celiac Disease using EnteroLab's Stool Test for Celiac Disease. This non-invasive testing method claims to be more specific, and more sensitive than existing blood tests (and, per implication from what I can gather, endoscopic biopsy of the duodenum). Moreso, you can do the test at home, since you are just mailing in a sample you collect in the privacy of your own home.

I heard about this through a friend of a friend; someone that had Celiac and was suffering some terrible issues related to it, but the "standard" blood-tests and biopsy did not detect it. Yet, every time anything with gluten was consumed, substantial issues arose. Then, they tried this fecal/stool test which showed a positive result for Celiac disease and gluten allergy. But, this is all second hand and I have no hands on experience.

If you wonder what price accompanies each test (I say "each", since they offer a series of tests including gluten sensitivity, milk protein - casein - sensitivity, soy, colitis, intestinal malabsorption, and a few others) . This is a link to the Enterolab Tests from which you can reach the pricing information for each test (and/or "panels" of tests). The basic gluten test seems to be $99.00 if I understand right. They have gene testing / genetics testing as well that looks for genetic markers that would predispose you to celiac or gluten-sensitivity too (that one appears to be $149.00). They claim your insurance may pay for the tests (I'd surely check with my insurance before ordering though - I would not just assume).

I'd love to know how effective they are and whether to recommend to others. I presume you would have to consume gluten prior to the test for a positive result, but it may be worth taking a bit of something otherwise prohibited and ordering the test just to find out. Celiac Sprue detection to-date seems a bit hit or miss, and I wonder if this test is really better.

If anyone has experience (first hand) with these tests, please share any info that may help others.

19 comments:

Anonymous said...

I did all of the tests ENterolab has which cost me seven hundred dollars...all of my tests were positive for everything they checked and I had also done biopsies which were negative and bloodtesting also that were false/positive so this was kind of a last resort. I can honestly say that after going on this very strict and almost elimating everything diet; I got down to a weight that was near death. I am now questioning all the money I have spent and who is right. As to the insurance thing; they do give you by email a so called bill but i seriously doubt Blue Cross will pay this at all...I am not saying there was any hocus pocus going on; just giving my results....oh by the way I have been gluten free for two months with no improvement whatsoever as well as soy, dairy, egg and yeast free for a month; still no improvement.

Anonymous said...

I went through Enterolab. All of my tests were negative except for gluten (IgA's elevated). I had already been gluten free for a few months, but it takes time for the body to quit producing antibodies after years of gluten ingestion. It took a full year for me to rid myself of all symptoms because I continued to ingest dairy. Frequently gluten intolerant people have issues with dairy until the intestinal tract heals enough to accommodate it (unless one has antiboides to dairy -- then avoid it for life).
To everyone reading this: You must give the gluten-free diet TIME. It is not a quick fix. You also must be strict as even a small amount of gluten will set things off and put you back to square 1. In trials with schizophrenics, it took a full 7 months to see results but the results were significant! I recommend Enterolab if you are having any symptoms at all or if you have relatives with gluten-related issues. For me, identifying gluten as the culprit of my health issues was a life saver. I was diagnosed with IBS and fibromyalgia, but it was gluten intolerance all along (and my blood test and biopsies for celiac were negative).

Anonymous said...

I'm interested in any more false postive/negative results regarding enterolab -- my son has been diagnosed with Crohn's disease, and his internal biopsies have never shown evidence of celiac, but the two enterolab tests we did both came back positive (for gluten and casein sensitivity). Our gastroenterologists (in VA and in Children's Hospital, Boston) think the stool testing is not accurate or worth anything, but our "naturophatic" doctor was adamant that we take our son off all major allergens (though he's always blood tested negative). Now we're in a war of traditional medicine versus natural medicine, and our poor son is stuck in the middle. PS... our insurance does NOT cover enterolab stool tests.

Mike Eberhart said...

Anonymous#3,
Sorry to hear about the battle between tradition and "naturalists". I don't know what the right answer is, and maybe you'll find others with experience to share that will be helpful.

The one thing that probably couldn't hurt (aside from the pain of diet-restriction if it isn't really needed) is to try the allergen-free approach and see if life improves for your son. This is a tough situation, as some people try this and find no improvement - as such an approach is somewhat of a shot-in-the-dark.

Sadly, there are many other conditions that may mimic some of the symptoms of Celiac too, which makes this all the harder when there is no definitive answer. Things like B12 deficiency could perhaps present some of the symptoms, though this is seen as relatively rare too. The fact that insurance won't cover all the tests to help narrow things down makes it all the worse. I sure hope someday there is a definitive 100% accurate test that is also affordable enough for people who's insurance doesn't cover it.

Thanks to all you anonymous posters for sharing your experiences - I'm sure others are interested.

Anonymous said...

I have had pains in my stomach my entire life (I'm 47 now), with diarreah, etc. They've always said it was nerves, or irritable bowel syndrome. My 72 year old mother was diagnosed with Celiac disease in the spring, and her doctor recommended that all of her children be tested. My blood test came back negative. (Apparently the blood tests are not very reliable). I was still having a lot of problems however, so I went to a Naturopath, who recommended Enterolab. I had the full screening done, and it came back positive for gluten and lactose. It also said that I carry two celiac genes. I have been on a gluten free diet for 3 weeks now. By the end of the first week, it felt like a fog had lifted. I wasn't tired in the evenings, I HAD NO MORE PAINS IN MY STOMACH!! and no more diarreah. That Saturday night I went out for dinner and had some chicken with a marinade that contained wheat. The next day I was doubled over again in pain. It took a couple of days again, but I'm back to feeling great. It sure worked for me! My insurance did not cover it, but to me it was well worth the money. Apparently it can take up to a year for symptoms to go away, but for me it was quite fast!

Anonymous said...

I am a grad student on a fixed budget with no insurance and did the enterolab testing as a last resort in Dec06. Because of my extremely limited finances I was only tested for gluten antibodies. In general I am feeling much better, but it took 6-9 months and without the support of a doctor it was difficult (emotionally) to keep up at times.
Now I am still suffering in some very minor ways compared to before, but I am thinking that I should get tested for some other allergens and just couldn't afford it at the time.
Anyway, my one concern is that I am wondering how a doctor will look at this once I do get insurance. I would also like to konw whether I have celiac or gluten intolerance and whether I will ever be able to eat gluten again.
In the end all that matters is improving health! And I agree with a previous comment that getting off of gluten takes serious time, not just a few weeks! Be committed and patient with your decision, let your body heal. You aren't harming yourself by not eating gluten.

Thanks for the blog!

fushia said...

As a self employed person who has to get her own insurance i would like to add some comments. A day may come where you are like me. I don't want anything on my medical record that doesn't have to be( I have been turned down for non life threatening conditions). It is sad but true. The medical world cant provide relief for gluton intolerence( I have rashes, joint pain, etc.) that gluton free can(rashes gone and feeling good). If you don't eat gluton and are better, do you have to have them approve.

Anonymous said...

6 years ago I randomly starting having grand mal seizures--no meds worked. Got the blood test for gluten from my Doc, came back negative. Got the test back from enterolab, said I was positive. I went on the diet and have not had a seizure in 3 years. (Doc thinks it was a random coincidence, I highly doubt it)

Anonymous said...

I'm so glad I found this blog as I have started my gluten-free journey just over a week ago. When I did, I contacted a friend who I knew had Celiacs and she reommended Enterolab. She heard about it from the book The Gluten Connection. She did not personally get tested there, but once she was diagnosed with Celiacs her sister and mom did, and there tests both came back postivie for gluten and casein. From what I've read, apparently the stool tests is better than a blood test b/c since gluten allergy is a digestive issue, it is more accurate to detect it from stool...the waste of the digestive system...rather than blood, b/c the antibodies show up in stool long after the gluten has been eaten since the body continues to produce them. Another good thing about the stool tests is that its ok if you are already eating gluten free, unlike the blood tests where you are required to continue eating gluten until after the blood tests is done. Since I just started learning about the gluten free lifestyle last week I haven't had any tests done myself...yet, but I plan on doing the basic $99 gluten intolerance test from Enterolab. I encourage anyone to check out their Web site...just google them.

Anonymous said...

I just got test results back today from Enterolab. My blood tests came back negative but the stool tests came back positive. My 10 year old's blood test came back positive last year and she was cured from so many psychological issues just by going gluten free. I have constant joint pain, IBS and am constantly tired. After I sent the stool 3 weeks ago I tried to go gluten free just to see how my body reacted and I felt amazing! My parents always had stomach pains and issues and my mom died from stomach cancer at the age of 61. Since I am carrying the gene it said that one of my parents most likely had it. I am hopeful that the new diet will help me like it did my daughter.

Anonymous said...

Like many of you. I had a negative blood test. My tests from Enterolab came back positive for gluten and casesin (main protein in milk). Both of my parents have the genes for it. My brother tested positive for celiac but the rest of the family tests negative with blood testing. Many of them have digestive issues. I was on a gluten free diet for about 8 months prior to testing but I was not totally strict about it. I kept wondering if it was all in my head. Once in a while I would have a craving and try some gluten food out. I paid for it dearly with severe constipation, bloating, and gas pains. I had the Enterolab tests because I wanted confirmation since blood tests only are positive if the villi are damaged. What people need to understand is that whether you are celiac diagnosed or gluten sensitive you still have to maintain a strict glutee-free diet to relieve symptoms and prevent future bodily damage. With time many doctors will have to accept and understand you have can the problems because you get villi damage. When I eat gluten free I not only eliminate the digestive symptoms but also the joint pain that I get. With time, it gets much easier to accept and learn how to accomodate your eating habits. Good luck to you all.

Anonymous said...

I had the Enterolab test done and it came back positive for gluten, but not casein. I have eliminated gluten for about two months. I haven't seen huge improvements yet, but am still hopeful. I have had terrible mood swings which I am hoping to resolve through diet. Also terrible bloating and fatigue and unexplained anemia. I went to a hematologist for three years and never had any diagnosis as to why I was anemic. I finally quite going to him. I now think it is celiac and wonder why it was never checked. I feel that I am eating better now (more fruits, veggies and brown rice) and I buy Betty Crocker's gluten free mixes if I want a sweet treat. I really haven't found the switch in diet to be that bad...except I can't find a good gluten free bread.

Anonymous said...

To the blogger who hasn't found a good gluten-free bread, try Udi's. It's at Whole Foods, Sprouts, or order online. $5 a loaf. It keeps a week on the shelf, and you can freeze the other loaves till you need them. Don't refrigerate after thawing. Wonderful bread!

Anonymous said...

For those of you that went GF for a month and still had problems, it can take up to two years to feel the full effects of a GF diet. Also, you need to be extremely careful because you still could be ingesting gluten in one way or another, especially if you're eating out. Also, my husband is a celiac and has the same reaction to corn. I've met other celiacs that have problems with corn as well. The stool test through Enterolab does not require you to be on a gluten-containing diet because the body still continues producing antibodies at lower rates for the first year or two of a GF diet. 95% of celiacs have not been diagnosed, and the average diagnosis takes 10 years because of doctors misdiagnosing patients. I never thought I was a celiac because my symptoms were not as obvious as my husband's, but I feel remarkably better after following a GF diet.

Anonymous said...

My husband and I both have Lyme disease and our Lyme literate doctor approaches our treatment with a combination of prescription medications and otc suppliments. That is to say, he does not treat JUST the Lyme but instead looks at the body as a whole, since LD can affect any and all body systems. His latest "thing" seems to have ALL his patients tested for gluten intolerence through Enterolab. My husband and I both tested positive. The doctor said he and his staff tested positive as well.

In the years before Lyme disease, I had been diagnosed with irritable bowel syndrome. I had also undergone the blood test for celiac disease, which was negative.

I have to admit, I'm a natural born skeptic and I am not yet convinced that my positive Enterolab test is legitimate, hence my visit to this website; I am looking for information.

I'm thinking that going gluten free is worth the try at any rate since I've suffered for several years with pain (everywhere) and have been given the [default, in my opinion] diagnosis of fibromyalgia.

Life changer said...

I am considering the Enterolab test. I had the blood tests but I had already been gluten free for 6 weeks so they were negative.
I had had IBS, migraines, easy bruising, asthma, memory issues, etc. for as long as I can remember.
I went gluten free 10 months ago and feel like a different person.
I am considering the lab test for verification and to check for other intolerances.
Anyone know if the stool test will be wasted if I haven't eaten gluten for 10 months. I don't want to spend the money if they would affect it.

Anonymous said...

Tried to order gluten testing, but unable to because I live in NY. Desperately need my 4 year old son tested for gluten sensitivity. He's speech /language delayed, sensory processing disorder, and ADD. It would be helpful to know if any of this is related to a food allergy.

Autumn said...

My son was about to get tested through his school for aspergers, he's 7. He would stim uncontrolably, self harm, rock, grunt, wouldn't make eye contact, etc. We read about the link between gluten and autism and took him off of gluten. Within 2 weeks he became completely "normal." His teacher was stunned and said he became a different kid and that testing would be pointless now. Anytime we "cheat" and give him gluten his behavior regresses dramatically and it takes 3-6 days to get him back to "normal." My husband REFUSES to feed him gluten for the sake of testing him. For us, we already know, it is obvious to us. It would be nice to have a test verify what we already know. We have an appointment with an allergist soon but I have little hope for that since he's currently gluten free so we are looking into this test. I have arthritis and migraines, my mother has always had gastrointestinal issues and I'm wondering about us.

happy in tucson said...

My 10 year old daughter, (now almost about to turn 12) suddenly dropped 10+ pounds and began having terrible bouts of nausia and cramping. I took her to two "experts" and she through two endoscopies and multiple blood tests. No one could help us and througout the school year (last year) she looked pale, tired, complained of feeling really "out of it" and continued to slowly loose weight. I thought I was going to loose my mind. FINALLY, a friend suggested going gluten and dairy free. After 3 weeks of going g-free, the tummy aches disappeared and her strenght returned. I began to read in books like "The Gluten Effect" about a Dr. Fine who has discovered a better way to diagnosis gluten and other food intolerences. Dispite the fact that my daughter had already been gluten free for 2 months - her tests came back positive. The Enterolab check gave me an important confirmation of what I strongly suspected but also confirmed she was malabsorbing. (She also had malabsorption tests which were negative but were obviously wrong.) Now, I'm happy, no estatic, to say she has gained 15 pounds and is feeling great. It is my personal feeling many, many, people suffer from gluten issues in varying ways and that within a few decades, many doctors will be recommending that we all watch the amount of cheap, overly processed, wheat flour we're consuming.