My Enterolab Results Are In....

[tarnalberry]

You don't personally know they are not bogus any more than you don't personally know that the medical tests your doctors would run are not bogus, unless you do the research yourself. You're right - Enterolab does not have the published history that older tests have. That doesn't mean that all new technology should be dismissed because it isn't old, however. I'm somewhat of a skeptic of the lab, but am mostly just waiting until they publish - it's a long process. There is independent research being done in Italy on stool testing for antibody markers as well that seems to support the methodology, so I have a feeling it's likely to go somewhere.

As for "but I feel just fine". Lots of people "feel just fine" just prior to being diagnosed with advanced cancers, to give just one example. Your external symptoms don't always reflect your internal state of health. Additionally, you have to remember that you're putting your own definition of "fine" on the word. Many people would not say that having to run to the bathroom right after having pizza is fine. It may be a relative "fine".

You've avoided asking your doctor for testing for this long... Go in and do it. You have nothing to lose. Really. Yes, you could get told "no, I won't test you for that", but the fear of being told no is not a good enough reason to risk your overall health.

[Guest AutumnE]

To me the proof is in the pudding, If you feel better then that is what should make the decision for you. They call it *practicing medicine* for a reason. I have an allergist I go to who happens to have celiac disease she recommends enterolab. My dr. who is a butt sometimes and stubborn noticed the stool sample being positive for damage and agreed that I had it and said it *was just as accurate as blood work* He wanted a scope, I declined. I pondered on it but I have been through enough.

If they are up to date on things and not an old dr who is not updated on the latest research (go for a younger dr) odds are they will notice and agree the stool sample reports. When its just the gene even though that is substantial enough for most of us some dr's dont agree with having to follow it.

I went through the denial stage too, I felt good but man I didnt want to change my whole life. Oddly, once you get the hang of it it's pretty easy. The only difficult thing I have is dinner's and birthday parties but Im slowly getting comfortable with it. I figure either I bring my own food or blow out their bathroom lol!

GL

[CMCM]

Jerry....I really do understand where you are at with this. I'm kind of curious how you were led to the consideration of celiac disease and Enterolab. I've been where you are....I still am there, in certain ways. This is a very thorny issue to resolve, and we get very little help from the overall medical community in the U.S., most of whom are largely clueless about celiac disease/gluten sensitivity other than a very cursory knowledge.

My mom was diagnosed with celiac disease back in about 1966 after nearly dying of malabsorption, and hence malnutrition. At diagnosis she weighed about 80 and could barely do anything. A sharp and knowledgeable doctor finally diagnosed her (after years and a string of clueless doctors). She went on the diet and recovered fairly quickly, and at age 85 is still doing well. But even today, if she gets even a smidgen of gluten she is violently ill. That's her story. Our family vaguely knew there was (we were told) a slight, perhaps 1 in 4 chance one of her 4 children would also have it. But none of us got sick like she did. Yet.....

I, her second child, had horrible dairy issues right from birth. My entire life I knew dairy could and would often create digestive problems (gas, D, bloating, nausea). So I mostly avoided dairy, although not completely. As an adult I figured it was lactose intolerance, and took lactaid pills when eating dairy (the pills helped slightly, but not completely). I never considered celiac because I wasn't sick or underweight like Mom was.

My whole life I increasingly felt I had a very temperamental digestive system. Some reactions were predictible, others not so much (delayed reactions??). Finally, about a year ago I had been on a real binge with gluten/wheat containing foods and had a seriously frightening reaction with extreme nausea and vertigo, and it scared me enough to start reconsidering the gluten connection. I had previously had a celiac blood test which showed nothing (in general, my gluten consumption was light, perhaps that's why). But reading about the Enterolab approch made sense to me (especially the progression of reactions....which logically begin in the intestines and only much later will appear in the blood....so testing stools made a lot of sense to detect reactions that wouldn't necessarily show up in a blood test). Well, on doing Enterolab's full testing panel I learned I had 2 problematic genes: The celiac gene, undoubtedly from Mom, and a second, gluten sensitivity gene from my Dad. Since my Dad died in 1989, I'll never know if he also had a celiac gene, but he was Scandinavian so odds are high he might have had it. I tested above the 10 on everything except the fecal fat test, which was normal (indicating no malabsorption was occurring). I also tested sensitive to casein, the milk protein. IN addition to that, I might ALSO be lactose intolerant. So what to do with this information? With a normal fecal fat score what could I assume about what might be going on?

I went gung ho into gluten avoidance, also elimianted dairy, and from last February thru September I really felt pretty good. Very few cheats until late Sept. when we went on vacation and it all went out the window. More and more gluten and dairy crept into my diet. Not much reaction at first, so great! Denial set in, and I ate more and more gluten and dairy. But little upsets started happening...enough to tolerate and ignore, but suddenly now it has become a problem again and I'm forced to look at seriously avoiding gluten and dairy again. Weight gain, bloating, continual digestive malaise, D, nausea on occasion. It's all back.

So who to believe? Dr. Fine at Enterolab has made this his life's study. He specializes in this, whereas the average doctor you'll find in any practice barely knows of the existence of celiac unless he looks into a medical reference book. Which person would you rather believe? Just because Dr. X doesn't know about stool testing doesn't mean it's not valid. Dr. Fine appears to be ahead of the crowd with this. The medical community needs to catch up with HIM.

I think for ME, the problem is, beyond your everyday denial, the idea that without having the extreme reactions such as my mom had (eat gluten, within an hour or two she'd be violently ill), it's easy to deceive yourself into believing it's not serious, it's something you can ignore. And the relative vagueness of knowlege in the medical community all can lead to minimizing the danger of ignoring it and continuing to eat gluten.

There is a connection with many serious issues and undiagnosed celiac...including prostate cancer. So look at my family and consider this: One of my brothers, age 53, just got diagnosed with prostate cancer. He lives the most healthy life imaginable and always has, yet here he has this at such a young age. Why? My older brother was similarly diagnosed at 54. My father was diagnosed at 60. Is there a celiac connection? I think it's highly possible. Neither of my brothers have been tested or diagnosed with celiac. They had no digestive symptoms like Mom did, but they've eaten lots of gluten all their lives. My older brother has severe migraines and high blood pressure, and the prostate cancer. From celiac? Entirely possible. I've tried to get them to at least do the gene test and see what it shows. So far they haven't bothered to do this.

There is just so much that is unknown. And it's hard to proceed because the desire is there to have something really definite to hang your hat on. This has been my problem. And the overall medical community is right there to say "Hey, your blood test shows you don't have celiac disease. So you can eat gluten!"

You mentioned specific problems with pizza. Many celiacs also are casein sensitive. You might even be reacting to the casein in the cheese on the pizza as much if not more than the gluten in the crust. Or perhaps it's a double whammy. Pizza just kills me, I've never figured out why. Yet why could you eat a piece of toast, or a sandwich and have few, if any reactions. Why is the pizza so extreme? It's just all very very difficult to figure out, especially since many reactions can be delayed by even a few days, and I also think you can eat certain things until you reach some sort of "overload" situation. That's what happened to me with my vertigo episode....on reflection I realized I had eaten a really massive amount of gluten products over a two day period and had had not much non-gluten food. It might have been like some sort of "overdose" in a short window of time.

This is all maddening, and what has made it harder for me is the relative inconsistency of reactions AND the idea that I have to avoid gluten AND dairy. It's easy for denial to set in, really it is.

By the way, I'm now 57. I've lived with this "sensitive" digestive system my entire life. I've "gotten by." Enterolab's test seemed to indicate I don't have malabsorptio. SO....I ask myself whether that means I have escaped damage, that I have gluten sensitivity but it has never progressed to what is defined as celiac disease (the intestinal damage). Or do I have damage going on but a malabsorption condition has not occurred yet? Or will nothing happen without an as-yet unrealized trigger that would initiate the intestinal damage? This is what is so hard to figure out. No one can tell us this.

[JerryK]

Jerry....I really do understand where you are at with this. I'm kind of curious how you were led to the consideration of celiac disease and Enterolab.

Hi, I first considered Celiac about 6 years ago, when at age 40, ;)I had to have all my teeth capped because they were wearing down so rapidly. I dismissed Celiac, because I didn't have any of the gastrointestinal symptoms. I re-evaluated this when I began having gasto symptoms that could be consistent with Celiac. I fit the profile, I'm of dutch ancestry, short stature...etc...

The dentist said I had enamel hypoplasia...Celiac was what I could tie it to, so that is what first garnered my interest.

So, I tested positive from Enterolab. I admit I'm having trouble taking it seriously and I know I'm going to get slammed for saying that, but I'm just being honest. You have to understand that doctors are only human and when a doctor focuses on one thing, they begin to believe that everyone has it.

I experienced this personally when I tested low for testosterone...I talked about my problem with an endocrinologist. He was positive I had a pitiuitary tumor. He knew exactly where it was, exactly what size...said I needed an urgent MRI, and then likely surgery. Turns out it was the SSRI they'd been feeding me that was causing the low reading. I didn't have a tumor, I didn't need an MRI! This doctor specializes in treating pituitary tumors and he simply sees it in every patient he comes across! Personal observation, please don't flame me.

You have to understand that I've experienced enough crap from doctors, that I am indeed doubious of

most things medical. My problem with Enterolab and Dr. Fine stems from the evangelistic quality of his research. Now I'm not going to be arrogant enough to tell you I know he's full of it. Quite honestly, I don't know, but the skeptic in me is telling me to be wary. Medicine is all about money and doctors need to make a living, just like anyone else. This country thrives on major pharmaceutical companies who are force feeding millions of people their current drug of choice...it's all about the money. It's not about whether or not you NEED a cure, it is about whether or not they can SELL you one.

Also if you notice, Celiac symptoms vary widely and most people have many of the symptoms. Anyone could look at the list of symptoms and pick out enough of 'em to convince themselves they might have it. Personally I've experienced Dental Enamel Hypoplasia, Anxiety, Depression etc that

COULD be attributed to Celiac/Gluten Intolerance. The question is, ARE they. I honestly don't feel a lot different when I eat Gluten or don't eat Gluten. Yah, if I pound down three or four pieces of pizza, I sometimes get the runs. Is that enough to embark on what we all agree is a pretty restrictive lifestyle? I don't want to launch down the Gluten Free path, just because I was being a hypocondriac....so AM I? Was I? You tell me, because I don't have a freaking clue. I'm not ill most of the time...in fact you'd look at me and think I was quite healthy for a 46 year old. I run 10 miles regularly..I'm in decent shape. A big part of my problem is I simply don't know if this is real or it is Jerry being a hypocondriac....

Sorry about the book:) but it feels good just to get my thoughts out there. Now I am going to go to my HMO as soon as they open after the holidays. I will get the standard Celiac blood panel and see what it says. If it's positive, I'll have my answer. If it's negative, then I have a choice to make...do I entirely change my lifestyle because of this one doctor, and this one stool test, because he might be right? Likely what I wlil do is a lengthy, at least six month gluten-free period and evaluate how I feel.

Understand that I'm seeking the answer because my intellect will not allow me to just blindly follow. I have to believe it.

Sorry for the rant, but it's late on Saturday and I'm getting groggy:) Hope everyone had a great holiday. Jerry

[Nancym]

Well it is, of course, your body and you're the one who gets to make the choice.

But I think you owe it to your future self to at least give the diet a good trial. Get your tests done first and eat plenty of gluten before hand (3-4 slices of bread a day) for a few months.

[Jprock]

Jerry,

Don't be discouraged if your celiac panel comes back negative; mine did with the exception of having DQ8. Biopsy and capsule endoscopy also negative, but I simply cannot discount the positive response to a gluten-free diet (nor can my family!) I feel good for the first time in over two years. Just to satisfy my curiosity, I tested with Enterolab with the following results:

Antigliadin IgA 54

TTG IgA 30

Casein IGA 30

I also discovered a sensitivity to soy (bummer, I was just starting to really enjoy soy milk as I had given up dairy on the advice of my gastro). But what really amazed me was a lack of sensitivity to eggs. I haven't eaten eggs, or products containing eggs, for 35 years as I thought that was my problem. Not so, it was the wheat I always ate with the eggs. I eat egg products now all the time without incident. Amazing.

I started doing gluten-lite in August, prior to being diagnosed, because I had to try something, anything, to feel better and be able to function. Even though I tried to ingest gluten prior to blood work and biopsy, I had a very difficult time and had to give it up after 2 days. Went totally gluten-free in September (a few accidents have definitely convinced me of my sensitivity). Interestingly enough, correspondence with Dr. Green discouraged Enterolab, and I didn't go to them until after I had a biopsy - which, as I've said, was negative.

Good luck, but if the tests come back negative, don't discount non-celiac gluten-sensitivity, which my gastro has diagnosed me with, and he is treating me as celiac.

[bklynceliac]

I've posted a few times about Enterolab in the past, and I won't repeat myself, but I think anyone who tells you it is more certain than a leap of faith is incorrect. They may have taken that leap and been convinced, but there's just no independant hard facts about it's accuracy. That being said, I tested with them, got high numbers, and feel better after changing my diet. Also, Jerry, you said you only get sick when you eat a lot of pizza. If that's really true then stop eating a lot of pizza and forget about it. If that's all that's keeping from you feeling 100% healthy, then it seems like a pretty easy solution. I think though that you're not being honest with yourself. You wouldn't have gone to enterolab and dished out a couple hundred dollars if a third slice of pizza was really your only problem. You've mentioned that you often have to go in the woods when you're on long runs. I can tell you assuredly, that doesn't indicate normal GI health. Once in a blue moon fine, but as a regular thing, something is probably up. I think your Enterolab findings suggest that that someting may be gluten. But fundamentally, no one can decide that but you. The testing stinks, the symptoms are vague, and the prescription can be extremely intricate and slow developing. Gluten Intolerance is a tricky thing to pin down, so decide whether you buy it and if so, give it a real shot for 6 months.

[JerryK]

The testing stinks, the symptoms are vague, and the prescription can be extremely intricate and slow developing. Gluten Intolerance is a tricky thing to pin down, so decide whether you buy it and if so, give it a real shot for 6 months.

Thanks for the advice, I really do appreciate it. I will be asking my HMO to give me the standard Celiac panel. Then I will likely do a six month stint gluten-free, just to see if I feel better.

Just a comment about the vagueness of symptoms...that's part of the problem for me.

Thanks...