<<Disclaimer: Verify this information before applying it to your situation.>>
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.
*Support summarization of posts, reply to the SENDER not the Celiac List*
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