<<Disclaimer: Verify this information before applying it to your situation.>>

While I am responding Janet's post, this is applicable to anyone who
is considering a trial of the GF diet before celiac testing.

Janet wrote:

>My son recently went to the doctor for a physical(he has been following
>the diet for 2 yrs. now).   He asked the doctor what he thought about
>testing for celiac.

Testing would not show anything at this point.  He'd have to go on a
high-gluten diet for a long time first.  (How long?  That's another
post; but at least several months, I believe.)

>The doctor told him the blood tests were inconclusive...

If you've been on a GF diet, the blood tests are basically useless.
However, if you have not been on a GF diet, and have IgA antibodies,
IgG antibodies, and antiendomysial antibodies tested, they can be highly
predictive.  If all three are positive, at least 90% of the time it means
you have celiac disease; if all three are negative, then at least 90% of
the time it means you don't have celiac disease.

Of course, I'm not a doctor; but this information can be verified in
numerous previous posts and a reference file written by doctors who are
celiac experts.  See this list's web page for more information:

   http://rdz.acor.org/lists/celiac/index.html

>...and that the bioposy was quite painful so discouraged him from any
>testing.

Sorry, I disagree.  I've had the biopsy done twice on me, and on two
of my children.  It was not painful in any of the four cases.  Nor
should it be, if administered competently by a GI professional.

>Then he said to him "would you do any different if I told you didn"t
>have it?".  My son said "no, I feel so much better now".  Something to
>think about.

At this stage, I might not do anything different either, in your son's
shoes.  But at the time he started the diet, without a diagnosis, I
probably would have done things differently.  There are a number of
disadvantages to not having an official diagnosis, even if he truly is
a celiac (which he probably is).  For instance:

  -- What if he doesn't have celiac disease, and the improvement on the
     GF diet was coincidental?  Or it could be that he actually has some
     food allergies, in which case there may be other foods he is
     allergic to and would benefit from removing from his diet.  Food
     allergies are not the same thing as celiac disease.  If it is not
     celiac disease, wouldn't it be better to find out what it really
     was?

  -- If he is hospitalized or needs medications for other problems,
     he may need proof of his celiac condition to get a special diet
     or avoid generic equivalents when getting prescription drugs.
     Having an official diagnosis in his files may be of great help in
     convincing his doctor, the hospital, or his insurance company
     that he isn't just being picky or unreasonable in demanding GF
     food and medications.

  -- Would his doctor be willing to sign a letter stating that he is a
     celiac?  If not, then he can never claim the extra cost of GF food
     on his taxes, or on an employer's pre-tax benefits plan; because a
     doctor's statement is required as proof.

  -- I don't know how old he is or what his personality is like, but for
     children especially, an official diagnosis that you can "point
     to" can help you to convince your children not to cheat on the
     diet when they get to those wonderful, rebellious teenage years.
     Otherwise, when they say in that delightful, hostile voice:  "Who
     says I'm a celiac, anyway?  Can you prove it?!?",  what will your
     response be?  Teenagers are away from home a lot, and you have NO
     control over what they eat then.

  -- Most research on celiac disease requires biopsy-diagnosed celiacs.
     Without an official diagnosis you are generally not able to
     participate in these studies.

  -- If he has a definite diagnosis, it will be easier for him to convince
     his children's doctors to have them tested too.  It will also be
     easier to convince other first-degree relatives to be tested.

  -- Years from now, he may be unable to physically care for himself.  If
     he ends up in a nursing home, without any medical record of his
     gluten intolerance, will they take seriously his pleas for GF food?
     Will he even be able to ask for it?  And if not, then who's to step
     in and do so for him?  There may be someone (a wife, children, etc.);
     but what if there isn't?

These are also things to think about.

At this point, I don't know whether I'd want to go through a gluten
challenge if I were him.  But for anyone who is currently thinking about
just "trying the diet" to see what happens, I'd suggest you give serious
thought to all the potential consequences, both now and years in the
future.  Perhaps that biopsy isn't such a bad idea after all.

------- Jim Lyles --------
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-- Holly, Michigan, USA --