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

Wow, I dont know where to start. The response was overwhelming. Let's just
say that I received confirmation from many many people that they were like
me (*some* gut symptoms but much more fatigue/lethary/flu-like
feelings/depression) before going gluten-free. That is an eye-opener for
sure. I'm still alittle confused because as I said earlier my biopsy came
back negative (and slides examined by Joe Murray at Mayo). But there seem to
be plenty of people who were not diagnosed technically or who had tests
results showing no celiac, but they STILL improve on a gluten-free diet. So
strange!!!!!!!!

Here's a smattering of responses;

I read somewhere that fatigue is the number one symptom of celiac.  Lots of
depression also.  Anemia is a common symptom too.

Not everyone has the diarrhea problem or loosing weight.

You should read the book:  Dangerous Grains
by James Braly, M.D. and Ron Hoggan, M.A. It is very helpfull.  I don't
personnally know Ron Hoggan but he wrote many articles on the site:

_____________

Clinically diagnosed means nothing positive was ever found by the various
tests for CD.  When this happens the attending Dr. will make a diagnosis of
CD in the clinic because all the symptoms are the same as if the tests came
out negative for CD.

Going gluten free and improving is indication of having CD and thus I was
clinically diagnosed

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I should also mention that one time with this I felt exactly like I had the
flu, and was so sick I could barely walk.
_________________

Good heavens, yes.  That fatigue is one of the most common symptoms.  I put
up with it for years, along with my "irritable bowel syndrome" and
"fibromyalgia" before things got REALLY bad.  This can get worse, so
persevere and get a correct diagnosis.  I assume you have had the tTG blood
test.  If not, please do.  Biopsies can miss the problem.
______________
Celiacs disease is an auto-immune disease. Before I was diagnosed a majority
of my symptoms were auto-immune related: Rheumatoid arthritis, extreme
fatigue, and depression. It was only after I went GF that I feel the
digestive effects of consuming gluten.
______________

Have you been tested for anemia? Before I was diagnosed I was very anemic. I
eventually had to have IV iron. Not only was my crit low, but the size of my
red blood cells was only 62% normal size. Ferritin level was 3. Anemia is a
pointer to CD.

_____________

I have both CFS and gluten sensitive enteropathy. Gluten free definitely
helps my gut symptoms. Since I'm doing so many things, it's hard to tell
what is helping what with symptoms other than gut.
________________

Although I do have problems with my stomach....I ALSO
have issues with fatigue, lack of energy, and flu-like
symptoms!!!  My levels of fatigue etc....usually just
depend on the week or the day.....it always varies.
But I definitely don't have the energy I used to (and
I'm only 26.)
__________________

Foul smelling gas may be a sign of low stomach acid.  This could be caused
by antacids or aging.  If you take Prilosec type antacids be careful if you
try to stop because the acid rebound can cause an ulcer.  If you are not
taking antacids you could try Betaine HCL.  Check the archives for articles
on low stomach acid.
__________________

Hi,

I just wanted to let you know that I also do not have many of the symptoms
that it seems the majority of celiac's experience.  I am like you in that I
have experienced fatigue, severe headaches, and many other neurological
systems such as unclear thinking, numbness, blurred vision, hearing
problems.  I have no stomach problems at all and my biopsy test was
negative.  I also had been diagnosed with Chronic Fatigue Syndrome and have
had every test in the book.  No doctors had been able to help or explain the
reason for my symptoms.  The only treatment offered was pain killers.  I was
a basket case until I found a doctor that figured it out and helped me!  Her
name is Dr. Mary Wise, holistic physician, Rochester, N.Y.  If you are
interested, I can give you her website.
     Dr. Wise tested me for the gliadin anti-bodies and I did have elevated
levels.  She said that I needed to avoid gluten and also put me on some
supplements.  Finally, it made sense! Since I came up with the wonderful
idea to add shredded wheat to my diet, I had gotten so much worse.  The
gluten-free diet saved my life!  I noticed significant improvement (300%).
In 3 days I went from being totally debilitated to back to work full time.
This was last May.  I am doing very well now.  My headaches are much less
severe, my mind is clear, and my energy level has improved significantly.
It was truely amazing!  My suggestion is to give it a try.  The real proof
for me was not in the test, but the miraculous recovery that I made after I
eliminated gluten from my diet.

I hope this helps.  Good luck!

_____________________________

Have you tried eliminating sugar from your diet?  According to a book on
allergy, sugar can increase the symptoms that you mentioned.

I had similar symptoms before I quit eating wheat and gluten.  I still get
the bloating and rumbling if something has wheat in it.  For example, I ate
some flavored corn chips without reading the label.  "I must have eaten
something with wheat in it", I told my husband.  We starting reading the
labels.  Sure enough, there was wheat on the label of the chips.

Other related symptoms that I no longer experience after going gluten free
are white spots under my fingernails, bleeding gums, jerking leg muscles at
night, thyroid trouble, and lack of energy.  I didn't realize that these
symptoms were related until I read articles and e-mails.  I am convinced
that each person is very different as far as symptoms.

My younger brother and sister died of cancer.  My mother had Raynaud's
syndrome and schleraderma.  My grandmother had rheumatoid arthritis and was
lactose intolerant.  Apparently, these could have been caused by celiac
disease or wheat intolerance.  I am hoping to avoid their fate by eating a
gluten-free diet.  I am self-diagnosed, and I know how much better I feel.

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