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Hello, List members.  Boy, is my face red.  Not because of CD, either!
Several months ago, I posted an inquiry in response to another member's
posting regarding symptoms of lymphoma.  From the myriad of responses I
received, it was evident that the lymphoma posting shook up more than a
few of us.  About the time I received the last of your responses, I
moved.  Then my computer experienced health problems.  Then I simply
forgot about the requisite summary.  My sincerest apologies to you all.

Inasmuch as so much time as passed, I'll start by restating my original
post (abbreviated).  Then I'll provide a "nutshell" summary of the
responses -- and there were quite a few, for which I thank you.  I will
also include a few quotes from responses, including one in particular
from a physician who specializes in celiac disease.  I'm including some
mostly for the benefit of new celiacs.  I'll gladly forward the full
text of responses (edited and in MS WORD format) individually to anyone
who wishes to request them specifically.

My original post:

This posting is generated, in part, by yesterday's post regarding the
symptoms of lymphoma.  As I read the list of symptoms, I became rather
anxious, as some of them are part of my everyday life.  Examples:
feeling of pressure under the lower rib cage, especially on the left
side; feeling of general tightness in upper-middle abdomen, headaches
(all my life), nasal stuffiness (presumably due to allergies), etc.  I
started the diet in June, so I have been allegedly gluten-free for a
little over 3 months.  I don't feel much different, but then I never
really felt badly in the first place....   So my questions...these:  (1)
Are such symptoms common with other celiacs, even in the absence of
lymphoma?   (2) How long do such symptoms linger after removing gluten
from the diet?  (3) What other explanations might there be for these
ongoing symptoms?  And (4) what have your physicians had to say when
confronted with these, and other, symptoms?  I guess what I'm really
trying to get a better handle on is this:  Should I get overly
concerned, or am I just a "normal" celiac?

Summary of Responses

The responses were overwhelmingly positive.  The majority seemed to
indicate that it is perfectly normal, by celiac standards, to remain
symptomatic -- or even to become MORE symptomatic -- for quite some time
after initiating a gluten-free lifestyle.  Some symptoms, in fact, may
never vanish completely.  One respondent even quit the diet because of
her frustration and continued symptoms!  In spite of a bit of doctor
bashing, there was a general consensus that we need to communicate
openly with our physicians, especially when confronted with fears of a
complication such as lymphoma.  The "better safe than sorry" mindset,
therefore, seems most wise in this circumstance.  The notion of a yearly
physical by an internist was also mentioned -- and seems to me to be
very wise.  To my own question about whether to be overly concerned
about these things, the answer might be best stated like this:  Be
concerned, but not overly so.  Be informed, be checked, be careful, be
healthy, be happy.

A Physician's Response

A copy of my post as well as the one to which I was reacting was
forwarded by a friend to a physician who works with CD in another state.
 His succinct reply follows:

  "Untreated celiac disease is associated with an increased risk for
intestinal malignancies of which lymphomas are most common. Once the
individual has been on a gluten free diet for 5 or more years the risks
for lymphoma are said to revert to that for the general population.
There are many other causes of your friends gastrointestinal discomfort
such as simple lactose malabsorption. The article on lymphoma is really
horrendous as are many of the things people are putting on the internet
today. After reading the symptoms of lymphoma as described, I am
thinking of having myself checked out!!!"

 Excerpts From List Owner Responses

"I never noticed any symptoms until I WAS diagnosed.  It is quite
strange because I believe everyone at one point or another suffers from
all of the symptoms associated with Lymphoma.  My symptoms have to do
with my moods-crabbiness, fatigue, but aren't we all a little crabby and
tired?  It's quite confusing."

"Your symptoms are typical Celiac symptoms! You will find that your
headaches will go FOREVER!  Your nasal problems will diminish very
rapidly and your abdominal pain will also disappear!  You will have
wonderful renewed health to look forward to!"

"I went on a very strict GF diet for 6 months and didn't feel any
different.  In fact sometimes my chest pain got worse."

"I am on GF diet for the last 3 years and still have the most of these
symptoms...At the beginning I was just like you and had all kind of
search tests and biopsies for the cancer.  Now I just try to keep that
out of my mind as much as possible (not easy!)"


"Maybe it's just human nature.  I do not have CD, but reading that
lymphoma symptoms post got me worrying about myself!  I'm not an expert,
but I have a feeling that almost anyone reading that post might start to
feel a little anxious, especially if you are a little bit of a
hypochondriac (me).  I know that person was very well meaning and in
light of her family situation she feels she is doing the right thing,
but I think the post could frighten alot of people."

"I too felt apprehensive after reading the symptoms, and managed to
reason with myself that since they have been long a part of my life,
they are related to CD, not lymphoma.  My concern is that the symptoms
might be masked by the CD eventually."

"Look in the archives for info on Leaky Gut Syndrome, which can inhibit
the healing of the intestines and which is often a side effect of CD."

"It sounds like the symptoms you mention are within the parameters of
"normal" for CD."


"I, as you, have become nervous about that posting.  I have many of the
symptoms described...

If you have recently been thoroughly examined, you probably don't need
to worry.  Frankly, I think the docs would be more likely to pick up on
lymphoma than on CD.

If you develop new symptoms, then you would want to check them out. I
think the message is just not to neglect yourself or let new symptoms go
unexamined.

Unfortunately, going gf doesn't mean we'll never get conditions that
everybody else gets, so remember that not all problems are celiac
problems!"

"I would educate my physician about the symptoms and the link between
celiac and lymphoma.  I would insist on a ct scan (chest, abdomen, and
pelvis) and if you have an enlarged lymph node on the scan, a biopsy."

"My opinion is that you are "normal" celiac.  I have symptoms of some of
those listings even after 2 years gf.  As with any disease you can
relate to certain symptoms but I don't think necessary that you have
that disease."


"Don't be so concerned. It took over a year for me to heal. Once you go
on a g/f diet the chances of getting lymphoma are like the rest of the
normal people.  You'll be ok."

"My feeling is that blood tests probably monitor lymphoma better than
anything and that if you are going to an internist for regular
check-ups, he knows the difference between symptoms like "headaches"
that are common to something more serious."

"New celiacs can take up to 8 months to feel differently because the
"gut" is healing.  Hang in there - most celiacs feel great once the
transition occurs."

"It's easy to get carried away and pay a little too much attention to
our functions, seeing 'symptoms' at every breath.  I'd say, if it
bothers you, ask the doc. Otherwise, relax and enjoy your new gf life!"

"...follow your gut instincts. If you think something may be amiss, I'd
get it checked out -- and get a second opinion, if necessary."

"Feeling of pressure under the lower rib cage, especially on the left
side; feeling of general tightness in upper-middle abdomen:  Both are
probably from the gas distension from celiac.

Headaches, nasal stuffiness, etc:  Also common among celiacs.  May not
stop though even though you're on the diet.

Are such symptoms common with other celiacs, even in the absence of
lymphoma?  Definitely.

How long do such symptoms linger after removing gluten from the diet?
Often for two years or longer.  It takes that long to learn the tricks
for avoiding all the hidden gluten traps.  Took me about four years.

"Michael, you're just a normal celiac."


Respectfully submitted,
Michael S. Young
Jacksonville, Florida