<<Disclaimer: Verify this information before applying it to your situation.>>
I am sorry that it has taken me so long to compile a summary of your comments,
and thank you for all your good wishes. I did have my biopsy done on the 26th
of August, and they managed to insert the IV needle into the nerve in my wrist.
This has caused some peripheral nerve damage that will PROBABLY go away in
another month or so. Sometimes life seems to be a comedy of errors! So,
anyways, typing has been and still is, a problem.
The results of the biopsy were negative. However, if I eat anything with gluten
in it I get very nauseous, vomit occasionally, and have intestinal discomfort
for 2-3 days. So, I am going gluten-free regardless. I'm not really sure what
I should do now, beyond going gluten-free. Any suggestions?
The other thing I think I have figured out relates to the Urinary tract
infections: if Celiac affects the bowel (messy stools or actually diarrhea)
then the chances of a UTI are Much, Much higher.
Here are some of the summaries of opinions about biopsy reading (how competent
must your dr. be?) and some responses to low-grade fever. I hope this helps:
Eliyanah Delicate, Ottawa, Ontario
1. The samples can be difficult to read and an accurate sample can be difficult
to obtain. The sample needs to be taken from far enough down into your
intestine to accurately reflect the flattening of the villi. The first time I
had the gastroscopy done (by someone with several CD patients), the test was
inconclusive because it wasn't the best sample. When I had it done about 5
months later (the same gastroenterologist), it was a better sample and it tested
positive for sprue. If this doctor really doesn't seem to know what he's
talking about, then I'd suggest finding someone with a better grasp of the
situation. I believe it would at least help.
2. It's not the doctor who will decide whether your biopsy is positive or
negative. S/he will be informed by the labs who will stain and section the
biopsy and look for the characteristic signs. Just don't believe your doctor
when s/he tells you to come off solids ! :-)
3. If you could at all get another doctor, I would. The biopsy has to be read
by someone who KNOWS what they are looking for. The GI who did my son's biopsy
is a world-reknowned pediatric GI is very experienced and even HE got another
trusted pathologist to look at the pictures.
It sounds like you are slowly poisoning yourself and I think you need a
diagnosis soon so you can stop eating gluten! (I wouldn't trust the GI either,
if he doesn't know what gluten is!) Good luck!
4. Find another doctor if at all possible. Don't hesitate to call the office
and ask questions. Being ill so long takes the spunk our of us, and makes it
difficult to make the best decisions. You are your best advocate but enlist a
friend or family member who has the energy to be assertive. This doctor is your
employee, make him do his job!
5. Hi. Sorry to hear you feel so bad. Just to comment on a few things you
posted....
a. Drs write to rule out certain things....no the pathologist doesn't
necessarily look for OTHER causes unless they are blatant. I've been in the
medical field for a lot of years and this is one of my pet peeves. I had a
lymph node biopsy done three years ago and since the Dr. said, r/o cat scratch
fever, the pathology report said, negative. I did have another problem which
wasn't diagnosed until later. Truly aggravating.
b. Low grade fever/vomiting.... I had low grade fever and vomiting from
October 1997 until April 1998. The vomiting stopped when I had an emergency
appendectomy. The low grade fevers continued until I was totally, totally
gluten free. I still get them sometimes. I went through testing for
mononucleosis, EBV, arthritis, thyroid, etc.
Try and find a new doc. Just to let you know, I was still feeling really rotten
until I started on: Folic acid, iron, a daily multi-vitamin, calcium, and cod
liver oil. These have made a huge difference in how I feel.
6. I wish I could tell you that anyone could read a biopsy but it is not true.
In my opinion you need to go to someone that knows more about celiac. I am
going to forward you a post I made to this list awhile back. Your symptoms
sound a lot like celiac. I did vomit at times. I also had low grade fevers but
they did not last as long as yours. I'm sure you will get to the bottom of it
real soon.
This is the list she posted: Subject: Help with results of Biopsy
>I am posting to the list instead of just to Brenda because I feel my story
>may help others as well.
>
>When I had my first biopsy over 10 years ago my doctor told me the results
>were low positive and to stay on a low gluten diet. Since I did not know
>any better I tried and was still sick so I went to a second
>Gastroenterologist. I brought my biopsy report with me and he read it as a
>neg biopsy. He then did a repeat biopsy. I was getting very sick going
>back on gluten so we moved the date ahead. I was probably back on gluten
>only a week at the most. Of course this test was neg. He told me that I
>was just not use to eating gluten and I should get back on it slowly. I
>knew better at this point. I stayed gluten free but it really bothered me
>that I did not have a definite diagnosis. At that point I met someone who
>also had celiac and she recommended her doctor. I went to see him and of
>course brought my original biopsy report. He told me that no matter what
>the biopsy read he knew from my symptoms that I had celiac and I finally
>learned what gluten free meant. About a year later I saw his partner and he
>looked at my biopsy. Said it looked like a positive result to him.
>
>Brenda,
>My advise would me not to have a second biopsy but let another
>gastroenterolgist look at the report.
7. Dr. Marshall is the resident UK expert on CD - you might want to look up
some of his stuff on the web.
8. In terms of the celiac biopsy, I do believe there is a skill level involved
and you should call the office and ask two things:
a. how many celiacs has he biopsied in the past year?
b. how many punctures has he had and what does he estimate the puncture risk
to be?
These were things my GI guy talked about prior to the biopsy ... and then after
an "inconclusive" biopsy, he told me that it is quite often a real skill/art in
reading a biopsy. One thing I noticed was white blotchy areas .... but of
course!, with that thing down my throat I couldn't say "hey! what's that?"
I had seen websites that had those white splotches as a CD sign ... turns out
it was actually the light at the tip of the biopsy, and he said half the battle
with learning to do these is to be able to tell thedifference between the
flashlight relfections and CD white splootchiness ...
I personally would find another fellow. These types of procedures are yukky
enough, no sense in having the added stress of "oh god, I hope this guy read the
manual!" ... My guy even sent my biopsies to 3 different experts to see if
they felt he missed anything ...
9. I also had a chronic and long term low grade fever. It lasted about a year
and a half!!! And I got it everytime I ate gluten products.
10. Interesting question: my "normal" temperature used to be routinely above
normal- i.e. ~99.3 . I thought I just had an overactive metabolism, was
hyperactive, etc. I'm normal now- can't recall if it coincided with going GF.
11. Several suggestions, in no particular order:
You may wish to cancel your appointment and find a physician who is familiar
with and even specializes in celiac disease. At many hospitals, 'Reading' the
biopsy is done by a pathologist, not the gastroenterologist who performs the
test. The gastroenterologist may be able to see gross changes in the gut, but
the doctor who reads the slide makes the definitive diagnosis.
In any event, you may at least wish to talk with the doctor before the exam. If
you are on a GF diet, the upper GI endoscopy may not reveal much. It is
possible that your gut has recovered. If this is the case, you're going to
undergo a moderately invasive procedure and not learn much.
12. Sometimes you just need to do what works and forget the formal diagnosis.
13. HI. i am not sure but it looks as if you might be seeing a doctor in
ottawa as your e-mail looked loke it came from there. i live in Windsor Ontario
and I first should warn you that doctors in ontario even specialists are not
well informed on Celiac Disease. i won't go into my long history but I saw lots
of specialists over a period of 25 years in canada and the US for symptoms that
were classic and yet was not diagnosed until i got a terrible outbreak of
dermatitis herpetiformis which is a skin problem caused by celiac disease and
lost 28 pounds in 4 weeks. Even with that the gastroenterologist was not
convinced until my biopsy came back with evidence.
First I would like to tell you that you do not need a doctors permission to
follow a gluten gree diet so if it makes you feel better avoid gluten. Lots of
people in the world never eat gluten.
Second you MUST be your own advocate and not let the doctor's personality put
you off. Remember he is accountable to a College or regulatory body. He has to
answer your questions and the only way that you can ask questions is to be as
informed as possible. when you go for your biopsy , before he sedates you with
the Valium ask him what he will be sending specimens for. Most times doctors
check and do biopsies of stomache and small interstine and look for thimgs like
bacteria that cause ulcers, cancer cells and imflammatory changes that can
indicate celiac disease. They take from different ares. my last doctor did 6
biopsy specimens. Think of your doctor as a mechanic in charge of repairing
your brand new Porche or Antique Jaguar. Empower yourself.
There are also blood tests that doctors don't seem to want to do . i am
concerned that this is due to OHIP not wanting to pay. however they may be
unreliable as my doctors say.
i had fever 20years ago and had inflammedgallbladder that was the cause. They
removed my gallbladder and the fevers stopped. i also used to complain to my
doctor as a chid and an adult of pain in my bladder and would be giver
antibiotic sometimes with no effect until I would get diarrhea and stop eating.
Now that I have been gf for 2 years i know that that pain was from my bowel
cramping not my bladder. I get it when I accidently eat gluten make sure that
you look at your cultural heritage. my husbands name is LEVY and many people
thimk that I am Jewish but in fact i am of irish Decent from Nova Scotia .
Since my diagnosis 2 of my cousins have been diagnosed with it. Caliac Disease
statistic are available through the Celiac Homepage I think.
14. I had my biopsy by a gi doc who was singularly unimpressive and not nice at
all, to boot. But I was told that all slides are read by a pathologist, not by
the gi doc. If thepathologist has any doubt at all, another pathologist reads
the slides. And so on. The gi doc has only to get the right samples and handle
them properly. That's how it works here. Why not call and ask what their
procedure is. It can't hurt. You know, nice and innocent, I was just wondering
how you handle these things. Nothing threatening, no reason for anyone to be
offended.
15. Please don't hesitate to ask how much experience this doctor has with
celiac disease. We never did get a complete diagnosis for our daughter, because
the doctor did not seem to know quite what to look for. He said her biopsy
looked like someone with celiac disease who had had treatment for it, because
her villi were not totally flattened, only partial. He felt like the GF diet
was too hard to follow and I should just try to give her all the fattening
things I could to get her to gain some weight. After doing more research on my
own, I had her go gluten free and the relief from her symptoms was immediate.
16. The GI that told me what I have also told me that I would have to "cut
down" on wheat, that my children did not need to be tested because it was just a
fluke of my body. He is a partner in a large GI group. I think, hopefully,
that when the tests were done, they said look for everything, and the specialist
that reads the tests is the one with the knowledge to figure out what the tests
actually prove. So, it was written down in black and white for him. I asked
him for a copy of the report. It appears to be a report written TO him, with
explanations.
So, ask for copies of any reports. Without out to read over and over, I never
would have understood from what he told me. I asked for a diet plan and his
nurse found a xerox copy of a little list. Fortunately for me, there was a
support group phone number on in, and I found some folks that know a lot!
The next time I went to him, I asked him how many celiac patients he
treats....0. Then I asked if there were any specialists or research hospitals
that would know more about it. He said no....
So by that time I was a member of the local support group, got onthe phone and
started asking other celiacs who they go to. And found a great one that way.
17. Hi - I, too, run a fever at 99.3 to 99.7 quite frequently. Sometimes it
lasts for weeks. In the early morning, say around 7 am, it can be as low as
97.4 and rise to 99.3 by noon or middle afternoon. I can tell when it is
hitting me again as I feel so tired and feel like not doing much at all. I
generally take a couple of aspirin and it will bring it down to a bearable
amount so that I can function still.
The drs. that I have mentioned it to just tell me that if it doesn't go above
100, not to worry about it. Some help they are!! My sister has lupus and I
have tried to check this angle out, too, for a connection, but again the drs.
have told me that I don't complain enough to have lupus. This gets a little
frustrating! In the book, Coping with Lupus, it suggests using aspirin to
control fevers, so have just followed that advice not knowing if that is also
the problem, but it seems to do the trick.
Have been keeping a running record for the last month to track the fever at
different times of the day and it has been revealing. My activity load and
hours of rest seem to correspond to some of it. Also have wondered if when I
accidentally eat gluten, if that also contributes to it. With all the
infections you have been running, it would probably bring a fever on with it,
too.
This won't be any consolation to you, but have struggled with the fever since in
my early 20's and now am in my early 50's. Have only been GF for 3-l/2 years
now. Wish you well. Have corresponded a couple of times with another GF gal in
Texas that also runs the fever gamut.
18. My name is Jeff Black. I am a study coordinator for a celiac genetics
study at the University of Utah. I am not a doctor but I do collect biopsy
reports from study participants and can tell you that in most cases the doctor
sends the samples to a pathologist for evaluation. Most of the path reports I
see describe the villous architecture. Some pathologists insist on total
villous atrophy before making the celiac diagnosis. Others, including the
doctors I work with will call a sample with blunted villi or even
intra-epithelial lymphocytes consistent with celiac. Make sure the pathologist
is familiar with celiac, and make sure the doctor takes samples from several
areas, since the damage can be patchy. Most doctors want to rule out parasites
also. They should be able to use the same samples to look for giardia and other
parasites.
The safest easiest way to rule our sprue is through the serum antibody tests.
The endomysial and transglutaminase tests predict the outcome of a biopsy better
than 95% of the time. Don't have the antigliadin test performed unless you also
have the one of the first two I mentioned done as well. The antigliadin is
positive in non-celiacs, and negative in true celiacs too often for us to trust
the results. Of course you have to have been eating foods with gluten in the
weeks before you have either a biopsy or antibody testing.
More from Jeff in response to a further query of mine, asking HOW could find out
some of the information he was suggesting I get:
I would simply ask the doctor if he would look into the 'controversy' reguarding
intraepithelial lymphocytes as being part of celiac spectrum. Lancet V.349
pp.1755-59 -june 14 1997 has a good article. You might want to take it to your
next office visit and ask him to explain intraepithelial lymphocytes to you -
this would at least bring it to his attention. I don't know of any labs that do
antibody testing in Canada but I'm sure they exist. We have Canadians in our
study but none of them were diagnosed with antibody tests. If you don't mind
going through being biopsied, it is the most definitive method even given its
limitations.
19. This gastroenterologist doesn't sound like he knows a lot about celiac, but
fortunately for you, the biopsy is read by a PATHOLOGIST anyway. If there are
any other abnormalities in the biopsy specimen, they should be picked up by the
pathologist. ("Rule out..." is a common diagnosis used to justify a diagnostic
test.) I'd feel fairly confident that any gastroenterologist is capable of
doing a biopsy. Just make sure he (or your primary care doc) gives you a
referral to a nutritionist if the diagnosis IS celiac.
Your symptoms sound a lot like mine (including low grade fevers and vomiting).
Unfortunately, even after diagnosis and being gluten free for nearly five
months, I still don't feel "well" (although I'm not as ill as I was back in
March, and I've regained the 10 lbs. I lost).
20. It's nice to have a GI doc you can have a good relationship with, and be
able to communicate openly with. However he will not be reading the specimen.
Almost always a pathologist will look at the slides. The GI might look and give
his opinion, but hopefully the pathologist will have lots of experience looking
at them.
I had fluctuant fevers for many years, always lowgrade. Pretty well under
control now, unless I go way off my diet, which I have been known to do. Used
to have to get up in the night to "dry off" after bad spells.
21. First, get rid of this doctor immediately! I can't say that more clearly.
It takes a really skilled GI doctor to rule out CD unless the lab work or biopsy
hits them between the eyes. The small intestine where the villi are located is
about 20 feet long (it may be 20 yards actually, I can't recall but it is a very
long area). Even with someone who has obviously damaged villi, an experienced
doctor might biopsy some samples with undamaged villi, just by random error.
This illness is a specialty and an ignorant or very inexperienced doctor is
going to miss the findings if they are vague. This happened to my daughter:
she had completely normal bloodwork on all 4 panels for celiac. The doctor said
she didn't have CD. I insisted on a biopsy about 3 months later when my
daughter got sicker and sicker. Since I was diagnosed with CD by this same
doctor last year and since I knew my daughter wasn't getting worse for no
reason, I pushed for the biopsy. It came back "borderline" for CD but due to my
history, the doctor decided to diagnose my daughter as having celiac. It has
taken a year of being GF, but my daughter is well and normal now after being so
sick she was bed-ridden (she is 22 years old!). Trust your instincts! Do not
use a doctor who is completely unaware of this illness. How can GI doctors be
so stupid??? This is supposed to be their area of expertise!! It is also
really important to get experts who know how to read the biopsies. Often it
takes a second opinion to get an accurate reading.
Also, if all your GI symptoms went away completely in 2 weeks of being GF, I
think you have your answer regardless of any test findings!
22. Normally, when you have an intestinal biopsy, several samples are sent to a
pathology lab and the pathologist reads the slides. I was very fortunate in
that I was able to see my slide and I was very confident that the pathologist
knew what he was looking for. He compared my son's normal slide with my
abnormal slide. It was quite a learning experience for me.
I wouldn't worry about the GI doctor not knowing much about Celiac. As long as
you get diagnosed (hopefully you will have a good pathologist reading your
slides), then you can get the support you need from this listserve and the
internet and perhaps a support group if you can find one. The information my
doctor gave me on the gluten free diet was very deficient and I was so happy
that I had other ways to learn about the diet.
If you have Celiac disease, then it's entirely possible that your immune system
is all out of whack and perhaps you had some kind of low grade infection that
you just couldn't shake. I can't say I ever had a fever for such a length of
time, but I sure was sick a lot with sore throats, viruses, etc.
23. Your docs sounds a little scary to me. You need to trust this man, he is
going to insert something in your body! I've been in and out of the hospital
for the past three months. They finally transferred me to Stanford, and they
think I might have this Celiac Disease. At every hospital I was at, they had a
specialist read the tissue samples, or a outside lab.
I also had ALOT of vomiting. I went from 285 to 225 in a couple of months. I
used to be real muscular guy, but now I feel hollow. I also have diabetes so
that makes things a little more complicated. They put me on
"Predsinone(spelling?) it's a steroid. That helped the diarrhea and stomach
pain great, but there was a ton of side effects! I seem to be having frequent
urinary infections lately too.
24. It sounds like you are really sick and need to find a doctor who you can
trust. You may want to go for the gastroscopy with your present doctor since it
is already scheduled - This way you'll get your results sooner (it doesn't sound
like you can afford to lose any more weight). The doctor sends samples of your
intestine to a lab, so the skill of the person in the lab is essential - If your
villi are very flattened, it is easy to tell. They gave me copies of the
pictures they took from the inside of my intestine, and its pretty easy to see
there are no villi. (I'm a Ph.D. not an M.D.) The lab technician is the one
who looks at the microscopic level to detect celiac damage (the presence of
lymphocytes, among other things). If your result shows celiac sprue, you can go
on a gluten-free diet, and get healthy again. My doctor ordered a CAT scan to
screen for lymphoma - you may want to ask about this. A low grade fever can go
along with any kind of inflammation - I haven't seen this listed for symptoms of
celiac, but I have seen this listed for symptoms of tropical sprue, which has
the same symptoms and same villi damage as celiac sprue, but is caused by an
infectious agent. You take antibiotics and are cured. It doesn't sound like
this is what you have, because you responded well to 2 weeks gluten-free. Which
is more than I can say for myself - Ihave been gluten-free for 5 weeks now and
I'm still having symptoms! Not as bad, but I still have a long way to go.
25. Best of luck with your procedure. I must tell you that while I believe I
had a competent Gastroenterologist, he did not diagnose CD based on his
endoscopy findings. Instead, it was the extremely competent pathologist who
diagnosed CD. It is my understanding that the pathologist does the biopsy
analysis, not the physician.
26. I felt your frustration so much and can really relate. I thought ,find
another GI man. Frankly I think find one with Celiac patients and patience. I
finely found a MD that is a holistic Doc and she is testing me for food
allergies with an IgG 100 foods rast test. Also she had stool samples sent for
parasites. I told her I had just gotten my western medicine MD to test for
parasites and she said they did not test for as many as she was going to and
sent the samples to Great Smokies Diagnostic Labs. She also is sending out a
blood sample for Canadidas as I have many symptoms relating to yeast overgrowth.
She told me to not eat anything i was allergic too (knowingly) and 3 days a week
I juice fast - vegetable only or i eat only raw veggies ( do a lot of avocado
dip with turnip beet and daikon chips). I limit fruit, because of the possible
Candidas.
My western Dr. was willing to follow my lead but i was looking for a leader and
luckily found this holistic medical person. The GI i canceled my appointment
with. He said he had lots of celiac patients but alternative practitioners
tended to over diagnose wheat and gluten allergies. I thought i would see if
this holistic Dr had me feeling better before i subjected myself to another Dr.
who thought i was just an over diagnosed.
I hope you find someone who you feel good working with. I just followed a
gluten free diet and actively interviewed Drs for 2 months before i found Dr.
Malka. I had four other appts set up when I deceived I would work with her. I
didn't want to be so sick and depending and hoping and praying that the one i
choose would fix me so i just kept several Dr. on my possibilities list.
27. Yes, I had the low grade fever and swollen glands. All cleared up when I
went carefully grain free. The only grain I can eat is rice, and even that
doesn't sit altogether well with me.
28. I would seek out an expert in Celiac. I don't know where you live, but I
found one by going to the following web site and contacting the closest support
group (they list groups, as well as invidividual names and email addresses):
www.fastlane.net/homepages/thodge/groupsus
29. i would have trouble trusting that doctor as well. somewhere out there, on
one of the celiac websites (i think the scott adams site) there is a list of
doctors who come recommended by people with celiac. there might be one in your
area. the biopsy samples have to be taken from the right part of the small
bowel (the jejunum) or they are unlikely to show celiac. and the samples should
be read by a pathologist familiar with celiac. try a search of the archives of
this list, there is tons of information about that. i have had recurrent
bladder infections all my life and a questionable diagnosis of celiac. i
finally found a doctor i think i will like, an immunologist about four hours
drive away. if what you get from this doctor isn't a clear-cut diagnosis and
explanation for your symptoms, i strongly recommend another doctor. also, if
you are gluten-free prior to the tests, they'll come out negative--even if you
have celiac. that happened to me and i've had trouble getting a diagnosis ever
since. if i could change one thing in my life, i would have had the tests
BEFORE i went on the diet for two years.
30. Yes, I went for months with a fever of 99. I went to the doctor looking
for a place where an infection might be (sinus that was hurting, and a recently
operated on knee) but both times he ruled it out, and just didn't care to look
further. So I quit asking. I don't think it went away, I just quit checking my
temp.
After I went gf, it disappeared. And EVERY time I have eaten gluten, including
wheat, barley, amaranth and quinoa, the temp has come back for a period of time.
Lately it goes up for only a day, but when I first started this journey, it
would remain high for several days.
I figured this out on my own, by going without eating anything but rice and
bottled water, to see if the bumps on my hands disappeared, which they did, and
so did the temp, and a million other problems I've had all my life. Then I went
searching for an answer and hit upon CD. Then I went to my local allergy doc
(also a internal med guy) and announced I thought I had CD, then he shook his
head in exasperation and said no way could I have it, as it is too rare. It is
easy for a lay person to get confused.
Then I went to my local gp, where I also announced I thought I had CD, who said,
no way, it is too rare, but he "recognized that I was intelligent, if I thought
I had it, he would set up an appointment with a GI"
Then I saw the GI, where I went through every symptom that disappeared, he even
though of some questions I hadn't thought to mention, I answered the positively.
Did the biopsy, said it showed visual damage, but the "crypts" and the
inflammation didn't show the right thing according to the Doc who read it. By
this time I had been gf for 1 month. So he could not give me a diagnosis of CD.
And that was the end of that conversation, except that if I felt better gf, by
all means keep it up.
Then I waited many months before going to another internal med gut in another
town where I used to work at a hospital. Listed only the gut symptoms, with the
tender gut, irritable bowel, the temp that went up and disappeared after
abstinence, and he said "sprue-absolutely-best described case I've ever heard."
He didn't give the GI guy very high marks for leaving me high and dry, since he
did no followup to see what else could be wrong, if he didn't think CD was the
problem. So, there you have it. Stick to your instincts. You may not get any
help from the medical profession.
31. I have always suffered with UTI since I was 16 (now 38) and no one could
expain why. I don't know if I suffered form low grade fevers. They often say
that you could have a low lying infection that has never trully gone away. When
I was at my sickess, when I was tired (from work or whatever), I felt as though
I had the flu. I had to go to bed. I also have thyroid disease so my body temp
is very low (97.3 average). Sorry couldn't be more help!
32. Just keep in mind that by eating gluten free your villi will start to
repair itself thus when you go for your test they might not be able to
diagnose Celiac !
33. It seems you have exactly the same symptoms I had and going gf helped a
LOT. The fever thing was never explained away, no one could tell me why,
but it happened and it still happens when I get contaminated. It is
usally accommpanied by a really really hot face (like a hot flash). And
the urinary tract infections are always a threat for me, but I never
linked them to my celiac. I drink about 3 liters of water each day for
general health and to ward them off and this has helped more than
anything. BTW, your doc sounds like a quack. Ive fired 3 doctors, dont
be afraid to switch. It doesnt hurt their feelings, as this is what I
feared, plus THEY ARE THERE TO SERVE YOU. Seriously, I sound spoiled, but
being a doctor is his job, so feel free to call the office. If they get
annoyed - then remember what I said. It is HIS JOB, and if he doesnt do
it well, you can fire him.
34. I was diagnosed with CD about 5 years ago. I have been running a low-grade
fever for at least that long. I have gone to one doctor after another and
asked if there is a connection, but alas, I keep getting the response "That
must just be normal for you>" Personally, I think that is crap!!!! I FEEL
like I am running a fever.
Also, I have had constant problems with urinary-tract infections. I now take
cranberry suppliments to try to head them off before they start. I also asked
the dr.s if this was a sid effect of CD. Again I got that age old, "Some people
are just suseptable to those kinds of infections." One doctor even had the
nerve to begin lecturing me on unsafe sexual practices!!! I explained that I
had been celibate for the past 3 years. If you get others who report the same
thing, I would be very interested in hearing about it. Perhaps with enough
evidence I can convince my new doctor to look into the problem further.
35. Anyhow, the important part of the biopsy is to make sure the Dr. biopsies
the proper part of the jejeunum. I have been told that on my biopsies (the
gastro took multiple samples), some showed damage to the villi and some
didn't. He said on visual exam the jejeunum looked normal. I thought I had
been GF (I was diagnosed 22 years ago), but after the endoscopy I started
paying closer attention.
Your weight loss really calls for immediate action of some kind-diagnostic
or treatment. I went through the same thing before I was diagnosed and then
10 years ago when I needed an emergency gall bladder removal.
If CD is your problem, then you really need to do your research. Dr.'s are
not helpful with the diet.
I digressed a little. The important thing with your biopsy is that the
pathologist knows what to look for. That is why the Dr. wrote:Rule out CD.
Usually the pathologist will report on any other conditions he sees.
36. Yes I suffered from low-grade fever, and still do fairly often even
after years of diet-control. I simply seem to pick up infections in all
sorts of strange places, but especially sinuses, throat, vaginal and
intestinal (appendix). This improves with really good nutrition - it's
medically known as "chronic malabsorption syndrome", and you combat it with
a diet that is nutritionally intensive., You will need to find vitamins you
can take daily, and try to make sure that every bite you eat is
nutritional - don't go for the pretend pastas and rice breads, but for a lot
of fruit, nuts and vegetables. We don't need calories, we need to make up
for years of passing out the nutrients and build up a good base of trace
elements. My doctor recommended eating organ meats such as spleens, hearts,
kidneys etc because I had been a vegetarian for years and don't like meat,
and these give great nutrition in very concentrated form. (His words were
"anything you are premitted to eat, you are now nequired to eat, except
starches." And it really helped. ( By the way, I was also down to about 95
pounds before diagnosis, and ny healthy weight is about 125-130). Just be
patient and also realise that stress and emotional extremes are a symptom of
this disease, one they often don't bother to tell you about. So depression
is a sign that you are still eating something not right for you.
Use your own senses for a guide - your body will soon be able to tell
you whether you are eating well enough or not, and try not to take the
doctors too seriously. They tend to down-play the impact these problems have
on us, mainly from lack of experience, so use them for the big issues, but
use other sufferes for a guide to all the smaller issue. And good luck,
So that's it. That's all. All kinds of responses with all kinds of interesting
bits of info!
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Coming to you live from Where The Wild Things Are
-A division of the Eliyanah Delicate Update News Service
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