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I would like to thank all the people (over 50 of them)
who responded to my inquiry back in November.  I would
also like to apologize how long it has taken me to
summarize.   I would just like to summarize what
everyone said and tell everyone what else has
happened.  Everyone did have one common thread in what
was said - that my doctor was wrong and that even
though my blood work came back positive and my biopsy
came back negative that yes, indeed I am a Celiac.  My
doctor concluded I had irritable bowel syndrome and
put me back on wheat products and took me off all fat
filled products.  My doctor is convinced that I am not
a Celiac as my endoscopy cam back negative and I have
no damaged villi

I also had an allergy test (blood not skin) thanks to
some people suggestions but they all came back
negative. Another person recommended that I get a fat
absorption test done since I had mentioned in a one on
one email that my stool was floating.  This test also
came back negative.  The test I took for this was
where they took some blood and then I drank something
and had to wait 3 or 4 hours and they took more blood.

 Then I had to collect my urine in a huge container
throughout of the day.  I originally did a skin
allergy test but I have such sensitive skin that all
20 test came back positive including the test for
water, my arm was so red and swollen for hours.


I have been feeling a little better since I totally
took the fiber out of my diet.  I have noticed that
whenever I eat oats (cereal) that I am so sick I can
barely make it to the bathroom. When eating oats the
cramping and diarrhea all come back. I am assuming it
is the oats because the two times I ate cereals (Total
Oats and Brown Sugar and Lucky Charms, first
ingredients is oats) that the pain started.  And I
don't believe it is the milk as I had Fruity Pebbles
(a rice based gluten free cereal) one morning and I
was fine

Most people also agreed that 3 weeks is NOT enough
time to feel better, which I am being to believe also.

It is difficult for me to fully believe that it is
Celiac that I have, as I never lost a lot of weight as
most people say though do.  I did lose about 8-10
pounds but only because I stopped eating because I was
so scared of getting sick. Someone did mention this
"If you do not have weight lose then I would wonder
more about IBS than Celiac and being on this diet
would help or alleviate your symptoms of IBS as well
as less milk in diet even if not Lactose intolerant."

Since I have started eating gluten again I have
actually gained about 15 pounds.

Someone suggested "even after going gluten free, a CD
may experience some symptoms because it takes maybe as
long as a year for the gut to heal, so your cramping
and bloating after eating steak and potato does not
necessarily mean CD is not the problem. I couldn't eat
apples for a year after my diagnosis w/o problems. Now
I eat them all the time."   This is one reason while I
have decided to go gluten free for 6 months and then
see how I feel.

A lot of people suggested "some celiacs can help you
more than some doctors" and I should get rid of my
doctor

Here is what other people said:

1. "Do more research.  I suggest the following web
site:
http://www.fastlane.net/homepages/thodge/DIAG-TST.txt
as it will explain to you the difference between IGG
(very sensitive) and IGA (very specific to celiac).
Consider a trial on gluten free foods for a longer
period, 3 weeks isn't very long.  Also, you may have
still been getting gluten in your diet. It is in many
vinegar's, cheeses, most processed foods, salad
dressings marinades, soy sauce."

2. "So to summarize this rather verbose message I
think that you do definitely have Celiac Disease. As
to the continued problems... Are you still getting the
bone pain? I find that I reliably get bone pain if I
eat gluten after not for a while so I use it to
measure my gluten-freeness... A diet overly high in
starchy carbohydrates can give me the gas and the
cramping and makes me somewhat constipated. Try eating
green things--salads, steamed frozen veggies, etc--
instead of starchy things and see if that improves...
also, it is important to eat a number of small meals
throughout the day... like four or five... don't eat
large meals."

3. A lot of people said "listen to your body"  "The
best piece of advice I ever heard was, remember, you
are paying a doctor to guess what is wrong with you.
You are entitled to use your own brain and guess
yourself"  most people said their own doctors were of
no help and really only this list has helped"

4. "You could ask your doctor to do an HLA DR
haplotype blood test on you and if you are a DR3 or
DR5 or DR7 I believe, these indicate you have the
genetic composition to develop Celiac. Otherwise, it
is not likely. "

5. "Regarding the diet for CD. One it will take a lot
longer than 3 weeks. Two, it would be best to avoid
fat and lactose. If the intestine is trying to heal,
then these will only put pressure on the liver. Three
the intestine and body will need help to heal itself.
I recommend natural medicine. I am currently using
Nature's Sunshine UC3-J, especially for healing the
intestine. Only use herbs under a registered
naturopath, they should be able to tell you what your
body needs."

6. Someone suggested Chron's disease - but I actually
had tests taken for that and that came back negative

7. "Remember, unless your doctor has read hundreds of
biopsies, he or she could easily misread it.  You may
want to do several things - Get a copy of your biopsy
results - was there any indication at all of
flattening or other mucous abnormalities? Perhaps
another doctor might read the results differently. Try
the diet - to the extreme. If you feel better
(regardless of the 'label' - which doesn't open the
door to any benefits, anyway) it's worth it."

8. "Make certain that your body ph is okay. The quick
way is to have your urine checked with nitrazine
paper. If the paper turns purple, you are in good
shape. If it remains yellow, your alkaline reserve is
depleted and causing gastrointestinal symptoms.
Without an alkaline reserve, the intestinal mucous
cannot stay healthy. If you can find some ph balancer
from ecological formulas or bio terrain, it would
probably be less expensive than the test to just try
the ph balancer (less than $10).  Lots of people have
one leg that is about an inch shorter than the other.
The spinal misalignment that this condition causes can
pinch off the nerve trunks in the lower back, and
cause intermittent functioning of the abdominal
organs. I would recommend a trip to an osteopath to
evacuate this possibility. CD has a nasty way of
stunting growth, but not always evenly in some people.
Every person that I know with CD also has one short
leg (including myself). Persons with this condition
frequently experience "intestinal blockages" or what
feels like it. 3. Sometimes stress can compromise the
intestinal lining to the point where bacteria prevents
it from healing. A special diet can heal the gut when
this happens. There is a book written by Elaine
Gottschall called "the specific carbohydrate diet"
that addresses this condition. The book costs less
than $20.00, and the diet does work for those that
need it. If your symptoms subside when you are
fasting, and get really bad when you eat concentrated
carbohydrates (sucrose), you are a candidate for this
diet."

9. "The other problems what you have could cause
"Candida Albicans"  I asked my doctor about this and
he laughed at me that it was impossible.

10. "Some parts of your story sound a little like
mine. I would suggest you look into things like: -
leaky gut; - Candida; - an elimination diet, with
appropriate dietary challenges later on, to find out
exactly what you react to; - chronic fatigue
syndrome/fibromyalgia; - find a doctor who is also a
nutritionist and forget the gastroenterologist; -
vitamin and mineral supplements; probiotics and
prebiotics (lactobacillus and fructo-oligosacharide
(food for the lactobacillus). "

11. "If I were you I'd do a lactose and gluten
challenge. The lactaid tablets may do nothing for many
lactose intolerants, like me. Simply stop all gluten
and all dairies, even the aged cheeses and yogurts
they often tell you can eat for two weeks. Then eat
normal helping of gluten for a day. If that doesn't
bother you try normal helpings of lactose for a day.

Any reaction after two weeks of abstinence will be
much stronger than before, so it's unmistakable. This
is the most reliable test available to most of us."


A lot of people talked about how they had lots of test
but were too "afraid' to get a biosopy.  I had both a
colonoscopy and an endoscopy and they put me 100%
under, so I did not feel a thing.  I would recommend
to anyone getting a colonoscopy or endoscopy to make
sure your doctor puts you asleep.

Again I wish to thank everyone for all their advice
and support.  And again I do apologize for the delay
in summarizing.

Thank you so very much,

Laura