Discussion Board

My family practice provider is willing to do the blood test on me next week, so I will be on a wheat-fest until then... Is there a specfific test/tests I should request?

But I've been reading about Enterolab, and I am waiting to hear back from them if TRICARE covers it. It seems like only a couple people on this board have used Enterolab--any thoughts?

Also, it may have been on this board where someone mentioned NOT wanting celiac in their medical records since it could hurt with life insurance. My feeling is that if you're ever hospitalized, that's probably the only way the hospital staff will actually believe you. What do you think?

1. I would trust my own experience and reaction to the elimination diet, which is free, more than any lab test. I know that I have at least a moderate intolerance to wheat and gluten and do better without them. A negative lab test wouldn't convince me otherwise. I don't know of any value to me in a formal diagnosis. Your doc can't give you any better prescription than Dr. McDougall's (wheat and gluten free) plan.

2. Don't worry about a hospitalization. A hospital will always ask for known allergies - in that case just tell them that you can have a bad reaction to wheat and gluten. They aren't going to argue with you.

3. I would at least want a very good reason given me by the doc for taking this test to get a formal diagnosis. What are you buying with your time and money? Maybe there is a value to the diagnosis beyond what I know. But I would want that specifically spelled out.

Well, as SactoBob says... you don't really need permission from any doctor or lab to decide you need to stay away from gluten or whatever... but it could be that you are not totally sure that's the problem, maybe, and want some help figuring it out.

Or that you want the diagnosis "validated," so that if you did ever find yourself in need of the hospital, it would be so much more believable if you had an actual diagnosis.

Plus... one point here that SactoBob made that I might disagree with... that hospitals are aware of allergies, etc. Not from what I've heard. I've heard numerous stories of celiacs or parents of celiac children thinking they had it all squared away about their food needs, and then they were given gluten anyway, many of them, especially in the case of the kids, ate it unknowingly and got a reaction at a very bad time.

The best (or worst) horror story I remember reading on a celiac board a couple of years or so ago was a grown man going to have same-day, minor surgery. He told everybody, many times over, about his formally diagnosed celiac condition, and they all assured him they would keep that in mind. So as he recuperated from the surgery, they gave him the usual recuperation foods, cokes and crackers. He felt good, sipped the coke and nibbled the crackers and said to the nurse he had never had such tasty crackers and wanted to know what kind they were so he could buy them and have them at home... and she holds up a package and says something like... "Oh they're just plain old Keebler." Then he became instantly horrified and reminded her for the hundredth time that he wasn't supposed to eat wheat, by doctor's orders. She read the pack and said, "Oh these are okay... they don't have any wheat at all, just enriched white flour." This is both terrifying and amusing... health care professionals do not know the difference between Wheat and enriched white flour.

I wouldn't trsut them, even if I did have a real diagnosis... if I went to stay in the hospital, I'd take my own food... they usually have microwaves and refrigerators on each floor. If you were bad enough off, you could beg a nurse to go microwave your stuff for you.

As to Enterolab... I have no experience, but seen what several people have said. I'm not THAT impressed, although it might be as good or better than the regular tests one would get from a doctor.

The idea behind enterolab makes sense to me... that somebody's poopers would have antibodies to foods ingested causing a reaction, and supposedly it stays that way for up to a year AFTER a person stopped eating those foods. And apparently this is how they test for celiac in some European countries... rumor has it.

But I've seen where some peopel suspect that in this particular test, everyone shows antibodies to wheat... or just about everybody. And the doctor who formulated and does this test... Kenneth Fine, says he believes most people are reactive to gluten, whether they know it or not.

Well I can't argue... I don't know one way or another, but it does seem that Western countries are the gluten-eaters and the ones with the chronic disease, for the most part... but of course we all know there are millions of variables at work, both in concert and in isolation... so who the heck knows? And of course most people don't seem to have chronic diseases associated with wheat, but we see them eat wheat several times a day... so... there's that.

One disturbing thing to me is that Kenneth Fine has said he is about to publish his own studies from Enterolab results soon... he's said this for several years now. It also bugs me that he looks exactly like Jesus Christ on steroids... hmmm... maybe you can't judge a book by its cover... but possible megalomania or something seems to be suggested to me when I see him in action... I could just be paranoid, though... have never corresponded with him or seen him in person... but the net image of him kinda concerns me. He could still be a medical genius and kinda whacked out... so, again... I don't know what to think.

I don't know about insurance either... people complain celiac disease is about as bad as alcoholism for insurance purposes. I have no experience, since I am totally self-diagnosed.

So... I guess all this groundhog rambling is totally unhelpful. DianeR, who used to be on here... did use Enterlab and found it helpful. Not only was she more confident about the gluten giving her troubles, but she said they alerted her to a soy problem she didn't know about... got off soy and found herself feeling better... so... there's a good experience. It's also possible all the people who tested possible for gluten intolerance through Enterolab were in a state of denial about that... which, to me is kinda normal to go through when people first discover they can't have gluten and still be healthy... I know I went through this for five years, finally got smart and got back off the gluten and faced up to the whole situation. Maybe those who complained just really didn't like the idea of being gluten intolerant.

As you can see, I'd make a lousy judge, because I can't ever decide who's right and who's wrong!!! LOL... but those are just my thoughts.

I understand theneed to have a diagnosis... I wish I had one, just so I can tell others or if I ever need to tell health professionals... it would be so much easier to say "My Doctor says," rather than, "From years of misery, denial, research, and trial and error, I've come to realize...."

Good luck with whatever you choose to do !

Never be shy about reporting allergies or bad reactions to the admitting nurse. They are required to enter any reported allergies or adverse reactions into your records. They will not debate you. You don't need a test or medical confirmation. Of course, that does not protect you from incompetence if they give it to you anyhow. But neither will a formal diagnosis.

I don't do well with codeine and certain types of general anaesthesia . Although I expect the docs to read the records, I still remind them and don't assume everything is ok. I spent a morning convincing an incompetent admissions nurse that my kidney stone procedure was to be done on my left side rather than my right.

But you don't need to convince anybody at the hospital of any reported adverse reaction. They will not argue with you, but will write it into the records as they are required to. If you get the gluten anyhow, it is not because you were not believed, but because somebody made a mistake. Do your best to double check for a mistake like this. Having the test done will make no difference in this respect.

Heard the good new/bad news joke? Patient wakes up from surgery and doc says, do you want the good news or the bad news? Patient says "bad news." Doc says, sorry but we amputated the wrong leg. Patient asks what could be good news. Doc says that it looks like the other leg will be saved after all.

doodlepunk www.celiachometest.com

DianeR... you're still here!

Hello!

Wondering what led to your theory about leaky gut and healing? I think I'd be afraid to try gluten... I'd be scared that the symptoms might creep up very gradually, so much that you might not relate them to gluten anymore, on down the road. But I am curious to know how your experiment works out for ya.

It's good to hear Dr. Fine is FINE-ally (sorry... couldn't resist that one) publishing. I'll have to try to find access to that....I'm curious, although I never thought too much about ordering his test.

Nice to see ya!

will let you know what happens.After I submitted the order, there was a medical history quest. about symptoms.I didn't want to bother .I hate long surveys!

Well I've read that too, about people not being able to eat things and then later can reintroduce them without much difficulty. Mostly I've read that on celiac boards... where celicas start reacting to lots of stuff for a while during intestinal transformation... you could call it... or healing or whatever. Later they can eat the foods again.

I'm still hoping I can eat stuff I used to... I keep trying, but not too much luck yet. Once in a while I find I can eat some food again, but then once I get into eating it on a regular basis, BAM!... it hits me again and I gotta cut it back out.

If I can ever eat those foods again, I will. But I'm too scared to eat gluten again, fearing it was the cause of all the other trouble.

Sounds like you are doing a good job of having it all set up to be able to track any possilbe problems.

Good luck with it all!!! Hope you can eat whatever ya want... that's a GREAT feeling, ain't it?

I was always sorta happy to be a brave sort of "martyr" about foods, giving up stuff I loved for one reason or another. But giving them up because they make ya sick is another story... and I'm a total wimp about that!!!!

I've toyed with the idea of Enterolab, but I'm pretty sure our insurance won't cover it. We've been off gluten for about 4 years now, but my 9yo still has "food issues". We've removed various foods from his diet for months at a time, then slowly reintroduced them and eventually they "bite back". He got to feeling so bad recently he made the decision (which I think is way cool) to eliminate soy, corn, tomatoes, flour products (including Tinkyada pasta), and to cut back on grains. I gotta tell ya' that doesn't leave much for him and his "sophisticated" palate (LOL!) to eat! The good news he's feeling better already!

I don't think I'll ever eat gluten again (willingly). I now understand that I have been suffering from it for all of my life that I can remember. The gastro issues presented themselves later in life but I had that brain fog all of my life and the joint pain started in my 20s. The gastro issues started in my early 30s. I can't ever go back to that fogginess. If I let myself think about it, it makes me sad that I spent all of my school years not really understanding anything that was going on around me. How different it could have been.

Jamietwo...

Sorry your son's diet is so restricted, I know that's hard enough for adults and I'm sure it's even way harder for children...but he seems like a very bright young man, and I guess he likes feeling good a lot more than eating fun stuff. Good for him!!! Groundhog says hooray!!!

Fern...

I hear ya on those gluten regrets... sometimes I find myself feeling regretful of how much of my life was, I won't say exactly wasted, but I will say sacrificed... to gluten. But then I guess the best thing is at least we do know NOW... and from here, we can move on and have things under control. We can look forward, with the power of knowledge! So, we ain't doin' so bad, are we?

About the insurance stuff..... I really wondering about that. My 9 yo just had the blood testing done, but I'm wondering if I even want the biopsy (assuming it comes back positive) since that makes the diagnosis official and would then be a part of her record. Leading to .... not being able to coverage when she is older.

It really STINKS to have to think in those terms.

I would like to know is she has celiac vs. a sensitivity though... celiac changes are a whole different thing than a sensitivity that one can may overcome after a time without the allergen, and may be be able to eat small amounts eventually. KWIM?