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I see so many posts to this list about all kinds of symptoms of this 
or that -- tingling, headaches, weakness in limbs, skin problems 
(which may or may not be DH) -- seemingly seeking to find out if 
others with CD have experienced similar problems.

I just want to emphatically say that there are probably some serious 
diseases out there that people on this list might truly have, and 
having reactions to gluten MAY make them worse.  And NOT eating 
gluten may IMPROVE symptoms dramatically.  But gluten may NOT be the 
cause, and you may still have the disease.  If you have a persistent 
problem (even if it improves with going GF), my advice is to be sure 
you do not leave your diagnosis to just asking others on this list if 
they've experienced anything similar.  GO TO YOUR DOCTOR and MAKE 
SURE to have diagnostic tests.

Several years ago, I had a cascade of neurological symptoms (what 
seemed to be small seizures, problems with my eyes, weakness in my 
hands, pains down my back).  When I stopped eating gluten, so many of 
these symptoms either went away completely or at least diminished to 
a dull roar or rare appearances.  I actually did go see a 
neurologist, but -- at the time I saw him -- I'd been eating GF for 
about 2 years, and most of these symptoms had abated.  If I did 
accidentally ingest gluten, some of the symptoms would return, and I 
told him this also.

In an effort to not break our household bank by sending me to get an 
MRI, the doctor (who actually is an excellent neurologist -- has been 
my husband's, post a stroke, for many years) agreed that whatever it 
was seemed to be associated with the gluten.  He was not worried, and 
so neither was I.  We agreed I'd continue to not eat gluten, and ... 
NO MRI was done.

UNTIL two months ago, when I ended up unconscious on the bathroom 
floor from a gran mal seizure, and temporarily paralyzed on my left 
side.  I was rushed to the hospital, with all thinking I'd had a 
stroke.  However, they immediately performed a CT scan and there it 
was.  A very large meningioma tumor in the region of my frontal lobe. 
Within a week, I was in surgery, they cut open my head and it has now 
been removed.  (I'm glad to report that I'm doing very well, and was 
so so so lucky in that side effects have been minimal.)

So, here is a situation where eating GF actually ended up masking a 
BIG medical problem that I had.  I cannot say why eating GF might 
have made things better.  I don't even dare talk to my doctors about 
this -- they will think I'm an absolute nut.  I do know that a large 
part of my reaction to gluten is inflammation in my joints -- so why 
not inflammation around the tumor as well, increasing the possibility 
of neurological problems?  But such conjectures really matter not at 
this point.  I should have had an MRI years ago, to make sure there 
was nothing amiss in my noggin -- even though so many of my symptoms 
had improved after eating GF.  Guess I was too good of a salesperson 
to my neurologist, about the good side of not eating gluten.

I hope my story helps some folks here on this list.  If I can just 
drive home my point one more time.  You may have a very bad disease, 
and eating gluten MAY decrease the symptoms of that disease, such 
that you end up (as I did) blaming the problems on gluten.  Not on 
the underlying problem.  Just be cautious about this approach to self 
diagnosis.

And PLEASE do not flame me for this advice.  Just take it, if you 
think it applies to you.  And leave me alone if you have some problem 
with what I'm saying to folks here.  Going GF does, indeed, resolve 
many problems completely.  I am not saying that it does not.  Only to 
say, it isn't the be-all/end-all cure that some might think.  Just be 
cautious.  It might just be a band-aid on a wound that isn't going to 
heal.  And, believe me, I'm still going to eat GF, because it clearly 
has some effect on my brain health, in a good way.  In fact, I'd be 
scared to death to do anything but eat completely GF at this time, as 
I heal from all of this.

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