<<Disclaimer: Verify this information before applying it to your situation.>>
 
Hello to all,
 
At long last, I am summarizing responses to a very long post I made back in June
about our preschool daughter. It's bound to be a very long posting. I apologize
in advance if this causes trouble for anyone's email (but this is what happens
when a novelist tries to write a simple email).
 
To recap briefly: Our daughter (now five) had a severe reaction in May, which
continued for weeks. We saw a highly recommended pediatric GI twice, and we came
away from our appointments extremely upset. I posted our most pressing questions
to the list; most of the answers are given below. (Unfortunately, we were having
trouble with our email, and some transmissions were not successfully received.)
I can't thank you all enough for the wonderful support and information. This
list is one of the most important elements of our day-to-day life, and I can't
imagine where we would be without the people here.
 
Based on the responses we received and our own instincts, we made several
changes over the summer:
* We started using bottled water.
* We made more of an effort to rotate foods.
* We made virtually every meal from fresh ingredients, avoiding packaged foods,
  spices, juices, and so on, even if they were supposed to be reliably GF.
* Our daughter ate only food from home--no restaurants, friends, etc.
* We included more natural fats in our diet--coconut milk, avocado, nut butters,
  olives.
* We began to supplement with flaxseed oil.
 
Within two weeks of making these changes, our daughter was herself again. Her
BMs are usually what we would consider normal, except for the occasional very
loose movement. She's not having nearly as many hunger binges. She's usually
happy, energetic, sleeping well, and very sociable.
 
I can't single out any one change as being most important. But I do think the
flaxseed oil has been a big factor--when we forget to give it to her, she gets
hungrier. It seems to slow down the digestive process and allow her to make
better use of what she's eaten, aside from any other benefits.
 
We had a follow-up appointment this week with the same doctor. I had spoken to
him about his previous treatment of us, and I'm pleased to say that his attitude
was much better--I felt like we were two people talking respectfully together,
trying to solve a puzzle. He had clearly done a lot of research on my daughter's
case and I felt that what he said made sense.
 
We are doing additional tests to see if her thyroid function is too high and to
see if she has a selective IgA deficiency, both of which seem
to be strong possibilities.
 
Here are the questions we originally asked:
 
1) What is a normal stool?
 
2) Could a wheat allergy make a child stop gaining weight and growing? Could an
allergy cause calcium malabsorption resulting in dental enamel defects?
 
3) Can you cause a severe reaction to gluten by being on a GF diet, even if you
do not have celiac disease? In other words, if a person without celiac disease
went on a GF diet for a few months, then ate, say, regular wheat-laden cookies,
would that cause diarrhea or other symptoms?
 
4) What is the medical significance of  "very long eyelashes"? Why would this be
noted on a chart?
 
5) How can we be confident of the right diagnosis?
 
Here are the responses we successfully received. Thank you all again!
 
=====
 
>1) What is a normal stool?
 
In classic celiac the stools are steatorrhea. Steatorrhea is the passage of
fatty stools that are pale, bulky, frothy, greasy, malodorous and they
float. They may be liquid or semi-formed. The causes of steatorrhea include:
 
 celiac disease (gluten intolerance)
 pancreatic disease
 cirrhosis
 other liver diseases
 malabsorption due to other causes
 giardia infection
 vascular disease
 Whipple's disease
 small bowel crohn's
 and about a 100 other diseases
 
Note the key to steatorrhea is *floating*. Fat floats. The doctor is an
idiot if he isn't concerned. When I get a light gluten contamination the
sign is steatorrhea, but still is fully formed. The other characteristics
are present. To me it just means a mild case.
 
=====
 
Your letter last month intrigued me, although I am very late in responding.
 I was diagnosed with CD last October and since then have been trying to
figure out if my three daughters (ages 5,8,9) have it.  My bloodwork and
their bloodwork always turned out fine (which didn't help out in the
diagnosis), but finally had my daughters undergo endoscopies last May.  Their
biopsies clearly showed they had Giardia (parasite) and were treated with
antibiotics, and itseemed to take the edge off, but they still continued to
have stomachaches and a lot of stools.  I have started them on a GF diet (one
month so far) and it seemed  to make a difference in their stools (maybe just
once a day instead of two or more), plus less stomachaches.
 
I feel I am doing the right thing, but feel I am doing it alone without the
help of our doctors.  Since the villi looked pretty well preserved, they felt
they only had Giardia and not CD.   Your one question "What is a normal BM"
 is the best question I have ever heard, because I struggle with that same
question!!!.
 
The girls may go one day having a normal (solid) stool, and the next day it
may be loose and more than one.  The color is usually yellowish brown.
 Before I had CD, I always felt dark brown was the normal, but since be
diagnosed everything changed and I would say my normal isyellowish brown to
brown.  I feel our sensitivity levels are not as sensitive as others,  so
sometimes it is hard to know if we are reacting to something or not.
 
=====
 
My husband has Crohn's.  Diet has cleared up all
cramps,bloating,gas,diarrhea,etc.  Diet has been excluding ANY FOOD which
caused him any problems - in his case gluten, yeast, and MSG.  Since joining
the list I sometimes wonder if he was misdiagnosed and actually had celiac
but then I did see the ulcers in his colon on his colonoscopy so probably
not - just a similar disease which he has found can be controlled by diet.
He was sick all his life - doctors called it nerves, ulcers, you name it.
He was finally diagnosed at 18.  On and off medication (prednisone) for the
next 8 1/2 years. Then they wanted to put him on a drug he would take for
life - a leukemia drug which I can't remember it's name - he would have to
go for blood counts every 3 months for the rest of his life.  At this point
all my reading kicked in and he decided to try to totally control it with
diet (he had earlier went mostly gluten free which had helped immensely, but
not totally).  He has not been on any medication since he started a strict
gf,yeast and msg free diet about 1 1/2 years now.  He feels great - put on
weight, has more energy and only on accidental ingestions suffers the old
symptoms.  His BM's (when I see them) are normal colored and formed but not
normal looking - he says that is due to the constrictions in his intestine
and they will never be normal looking.  EYELASHES - he had the longest
eyelashes all his life,  I think they are still long but it is hard to say.
The canadian celiac handbook lists long eyelashes as a symptom.
 
Now,  Our daughter was severely constipated, foul smelling floating tarry
colored rabbit turds from the addition of gluten (malt extract ) from 6
months on.  Always had a lot of gas and I feel she had a distended stomach -
I know she always had a very big funny looking outsie belly button.  After
she turned a year, we introduced wheat into her diet.  Constipation
continued to worsen, more mucus in her BM's and at about 19 months she had a
constantly runny nose and eczema.  At 20 months she started a week long of
very explosive bubbly diarrhea.  At this point I cut wheat out of her diet.
Eczema, diarrhea an [note: the rest of this response did not translate]
 
=====
 
I read your "questions!" this morning and really felt for you.  I wish I
had answers, but at least I can reassure you that you are not the only one
who has felt this way.
 
"1) What is a normal stool?"   I have gotten the same vague answers with
this question.  I consider normal stools to be the "play dough" type, the
doctors we have dealt with don't.
 
"2) Could a wheat allergy make a child stop gaining weight and growing?"
I also got the "allergy" answer from a pediatric GI (who we are not going
back to).
 
"3) Can you cause a severe reaction to gluten by being on a GF diet, even
if you do not have celiac disease?"   Our son reacts to the smallest
amount of gluten, but that didn't cause much interest in the pediatric GI.
 
"Basically, he left us feeling confused, treated us like bumbling
overprotective parents"   BEEN THERE!!  Doesn't scrutinizing everything
that goes into and comes out of your child month after month give you any
right to feel like you know "something"??  I may not know the reasons why
my son reacts, but I know what works with him and what doesn't.  The
pediatric GI we saw also "knew his stuff", but I bet he has never spent a
day caring for a child who had diarrhea ten or more times a day.
Certainly not all GIs lack compassion on this level, do they?
 
"We can see beyond a shadow of a doubt that the GF diet has completely
changed our daughter's health, personality, and relationships. But what if
we're wrong? What if there's some other explanation?"  We also don't have
a definite diagnosis, just hard evidence such as you have.  We stick with
the diet BECAUSE IT WORKS, and we pray that we are not missing anything
that will hurt our son.
 
=====
 
>>3) Can you cause a severe reaction to gluten by being on a GF diet, even if
you do not have celiac disease? In other words, if a person without celiac
disease went on a GF diet for a few months, then ate, say, regular wheat-laden
cookies, would that cause diarrhea or other symptoms?
 
It certainly would.  I am gluten intolerant, but don't have CD.  I cannot
have any gluten at all.  For me, it causes bowel problems, stomach/intestinal
pain, acne, problems with vision and balance.
 
I no longer seek western medical treatment.  I don't deserve to be treated
the way you describe.  So often I have encountered the attitude of: if I
don't know about it, or if I don't understand it completely, it doesn't
exist.  So,,, I stopped going.  (Not that I am suggesting that you do this
with you daughter.)
I hope that you find the diagnosis and treatment that is 'correct' and that
helps her.
 
=====
 
I am not a medically-trained person, simply one who has some
experience with the symptoms your daughter has, and would like to send my
thoughts along for your consideration.  I have not yet been diagnosed with
Celiac Disease formally.  A doctor did suggest the possibility and put me on a
gluten/dairy free diet.  I felt *much* better.  However, on occasion, I still
have digestive problems, manifesting as diarrhea, sometimes so severe I pass
little-digested food.  For me, this has nothing to do with celiac.  I am *very*
sensitive to dust and mold, and these will cause digestive symptoms with or
without gluten in my diet.  Although without gluten/diary, it seems that I can
tolerate more dust or mold than with gluten in my diet.  If you want to explore
this, a doctor who specializes in environmental illness is the person to see.
 
I sure don't want to discourage you from seeking the best doctor for your
daughter, but for myself, I am wary of any "professional" who puts me down or
puts down other "professionals" or their diagnoses.  It seems to me that a
good doctor would welcome a parent's cooperation.  Maybe you could check this
fellow out with the parents of other CD children in your support group.  Or
maybe it's a matter of personality differences.  You need someone you trust and
can work with freely.
 
=====
 
>2) Could a wheat allergy make a child stop gaining weight and growing?
>Could an allergy cause calcium malabsorption resulting in dental
>enamel defects?
 
>From personal experience the answer to the first part of question 2
above is yes. We started weening our son at about 3 months. He continued
to gain weight but at a slower and slower rate until at 10 months he
started to lose weight. The switch to a gluten free diet was the
solution - he is now a very fit 24 year old and still on a gluten free
diet. As far as calcium malabsorbtion is concerned I have no information
and am unqualfied to comment.
Good luck.
 
=====
 
Assuming she doesn't have a flu bug, have you considered reactions to
food coloring, fruit & juices, nutra sweet, too much sugar?  I felt our
son got reactions from some or all of these. Some of the characteristics
of her bm's sound familiar - it seemed to take a long time for them to
firm up here, however, I no longer see or check them on our 8 yr. old. I
don't recall those cloudy disintegrating bowels occurring suddenly after
being somewhat healthy. In time I think they stabilized.
I'm sure you don't want yet another doctor, did you ever look up Dr.
Melvin Heyman at UCSF? I would think his opinion would be quite valuable
if insurance allows.
I've heard of long lashes before, and our son was born with that, but
it is gone and nothing we notice any longer.  I sure don't know what it
meant but found it interesting too.
 
Good luck and good health to all of you. When all else fails, do what
works.
 
=====
 
I'm just curious about you mentioning the long eyelashes. I'm a Celiac,
24 yrs old, male, and have too long eyelashes.
 
I'm thinking this could be a trend...
 
=====
 
I don't have any answers for you except in regards to
the "very long eyelashes" comment.  MD's and RN's are trained to note
all observations on the chart, especially during the first
examination (History and Physical section of their notes).  This way,
hopefully, nothing is missed.  Unless someone says otherwise, I would
tend to believe this comment has no bearing on the problem at hand.
I'm a pediatric RN.  My niece is suspected of having celiac.  She is
17 months, biopsy will be done soon.  She is currently GF and doing
great.  She will have to go back on gluten for 2 weeks prior to
testing.  My sister says the same thing about her stools, she is not
sure if they are normal or not.  Hopefully,  your summary will help
us, too.
 
=====
 
Another question:  have you talked to Elaine Monarch of the Celiac Disease
Foundation in Los Angeles?  Her phone is 818-990-2354.  She is terrific.
 
=====
 
You must trust your instinct and also your more
intimate knowledge of your daily observations of your child's health. You
are more in tune with if your child is feeling OK, or if something is out
of balance. It is nice to have a respected physician, but it is also necessary
to have the respect of your physician. I usually go in to a doctor's
appointment with notes, so that I can ask all of the questions I have. An
excellent physician will also be an excellent listener, and be sure that all of
your questions are answered. You have every right to insist that the
doctor address your child's health related concerns. If your Doctor is the
"one hand on the doorknob" kind of appointment, than it is time to find a
different doctor. I am going to try to include (Attach) a list of questions
for talking with medical professionals regarding potential procedures with
this e-mail. I have quit seeing physicians who have no time to answer my
questions, or are too busy to give decent service. I asked friends who are
nurses & midwives for referrals to "best doctors". This yielded some
great physicians. Good luck- trust your instinct!
 
=====
 
Our daughter, age 6 was recently diagnosed with celiac's.  We went to the
hospital in Iowa City after putting Kelly on a wheat free diet for a week
because we suspected Celiac's from our family doctor and information on the
computer.  The doctor thought it was celiac's too so we did the blood test and
the biopsy the same day.  Her blood work all came back normal(as in no Celiac's
disease).  The biopsy was positive for Celiac's disease.  The doctor questions
whether she has it because of the blood work.  The most important thing to us
as parents is when Kelly is on her gluten free diet she is a whole new person.
She craves all the foods she needs in sufficient quantities to advance her
physically, mentally and emotionally.  We don't care what it is as long as it
makes her healthy.  I hope the doctor is reasonable on our next visit.
 
=====
 
I think a lot of doctors are obnoxious.  They regularly drive me crazy.  I
think you need to concentrate on the quality of the advice you are getting.
It doesn't matter that the guy acts like a know-it-all----the issue is
getting your child diagnosed and hopefully cured.
 
=====
 
I really think that you cannot underestimate the gut reaction of a parent. It
doesn't make you right, it makes your questions valid and a doctor that makes
you feel bad about wanting to help your child does not have his/her act
totally together.  He sounds like he has a god complex and I wouldn't use him
without letting him know that you you are a proactive parent who is merrely
trying to help your child and would appreciate being treated with  a
respectful attitude. If he is critcising your previous choice of doctors, I
would suggest to him that you also choose him so questioning anyone's
judgement here is not helpful..  Good luck.
 
=====
 
My children are not so young. I was diagnosed at 47 yrs. and my 21 yr. old
daughter had been havind intestinal and menstral problems for years. She
took morphine to get through most of her periods, she was  in so much pain.
 
On my advice, she went to the same GI specialist who had diagnosed me,
although many members of the local Celiac Assn. had indicated that he rarely
diagnosed celiac.
 
After the endoscopy, he said that she had a thickening of the bowel wall,
but it was not celiac disease. She had been seeking the answer to her
problems before the endoscopy, and this was disappointing because she was
looking for an answer. She had moved to another city, when she started
vomiting daily, and was losing moreand more weight. She saw another gi
after trying a g-f diet for a few days. She underwent another endoscopy,
which again did not demonstrate villous atrophy.
 
About that time, she decided to try another general practitioner. He did'
blood tests, and diagnosed celiac. My daughter has been on the g-f diet
ever since. She has gained back about 25 pounds, but still needs to put on
a little more weight. She is about 5'8" and has a large frame, and was down
to ninety something.
 
I recently read the following article, and remember a Finnish doctor named
Maaki or something like that, who is also calling for a re-definition of
celiac disease.
 
Marsh, Michael N. "Gluten, Major Histocompatibility Complex, and the Small
Intestine" GASTROENTEROLOGY 102: pages 330-354, 1992.
 
This is a direct quote:
"Terminology involving varying degrees of so-called villous atrophy represents
a jumble
[note: rest of transmission not successful]
 
=====
 
Re the notation on your daughter's' chart of long eyelashes:  this is from my
New Child Health Encyclopedia, The Complete
Guide for Parents, Boston Children's Hospital, under Celiac Disease, Signs
and Symptons: "In severe cases, a child develops a smooth tongue, long
eyelashes, and clubbed fingers; tooth development may be delayed."
     I always felt that at least my daughter got one good thing out of this
disease:  great eyelashes!
 
=====
 
Your daughter's situation sounds somewhat like mine after I moved
from AZ to VA & I'm 44! Maybe I can shed a little (non-medical) light on some
of your questions.   First, it seems that the docs think any kind of stool is
OK as long as you're not malabsorbing. I understand there is a much broader
definition of "normal stools" than they used to have.  I don't know about an
isolated wheat allergy that would, I think, be IgE mediated, but celiac
definitely can result in malabsorption which leads to stunted growth & dental
& bone problems.  Celiac is an autoimmune disease which is different from a
"true allergy" (like to a bee sting or some folks get to shellfish, etc).  I
suppose if your daughter had a true allergy that re-exposure could result in
a more severe reaction than she had before.  The two complications I had were
first, inadvertant gluten ingestion from swithching to new & different brands
when I moved (not knowing as much as I do now about ingredients) &, as a
result, I developed a lymphocytic colitis.  Could this be a possibility with
your daughter?  Don't give up...listen to your "gut" feelings, too.  My
daughter, a teenager who doesn't have celiac, stays GF at home, but doesn't
have any problems with the occaisional gluten she eats elsewhere.  Good luck!
 
=====
 
Your.letter.struck.a.chord.in.me.as.I.am.a.biopsy diagnosed celiac (21/2 years
ago), carefully watching my 6 year old
twin girls for symptoms.  The major factor here is your daughter's
dramatic improvement on the GF diet, and her previous diagnosis.  It is
irresponsible of your present physican to put you through all this
anxiety while your daughter is doing so well.  I have yet to meet a
diagnosed celiac who has much confidence in the medical community's
handling of this disease.
                Don't allow this new doctor to intimidate you! YOU know
what is best for your daughter right now.  (Maybe as she gets holder,
she will WANT a gluten challenge to confirm diagnosis), but right now,
isn't the  regaining of her health and  quality of life the most
important thing?
                You need to contact a local support group for support.
There are many out there with your same situation.
 
=====
 
>1) What is a normal stool?
>She usually has two BMs daily. They are a somewhat orange color.  The amount is
>fairly large, and the consistency is sandy and feathery. They are just barely
>formed when they come out. Upon the slightest motion--and always upon
>flushing--they instantly disintegrate into a sandy cloud. We often have to
flush
>a few times to clear it all away. This has been going on for several weeks now.
>This doctor was not concerned about this. He made me feel silly for being
>concerned. He said that as long as there was any form at all to the BM, as long
>as it was not liquid, it was fine. Does this sound right to you?
 
I am not a medical person, but that sounds familiar to me. I have an
intolerance to wheat and oats (at least), and milk intolerance. I am not
celiac. But if her stools float in addition to what you have stated, it may
indicate an intolerance to wheat or grain. The stools may be feathery and
grainy and float because they are full of gas, generated by the intolerance
(probably not allergy). A celiac's stools would also float, but they would
be greasy, look slimy, and leave an oil slick on the water from their
inability to assimilate or digest fats (steatorrhea). First I would
recommend Dr. Brotstoff's book, _The Complete Guide to Food Allergy and
Intolerance_. He is the head of the most respected allergy clinic in
England. It will, among other things, explain the difference between an
intolerance and an allergy. Allergies are usually for life; intolerances are
sometimes only temporary if the offending foods are avoided for several
months or a year.
>
>2) Could a wheat allergy make a child stop gaining weight and growing? Could an
>allergy cause calcium malabsorption resulting in dental enamel defects?
 
Yes.
>
>3) Can you cause a severe reaction to gluten by being on a GF diet, even if you
>do not have celiac disease? In other words, if a person without celiac disease
>went on a GF diet for a few months, then ate, say, regular wheat-laden cookies,
>would that cause diarrhea or
 
=====
 
Andrew, while I realize I am an adult with Celiac Disease and not a child one
of the first things i would do is contact any support group in your area, and
ask them the best pediatrician to deal with your child. this doc may know
what hes doing but when they're not concerned with your concerns, sack him.
 find someone who will deal with ;you, not against you.  I had to do the same
thing with my doc  You didnt say whether you moved from a diff state.  If so,
also try bottled water for a while.  Her bms certainly dont sound normal to
me.
 
=====
 
I am not a doctor, but it sure sounds to me like your daughter has got a
hold of something with gluten in it.  What has changed?  Are you sending her
to a different kindergarten, day care, babysitter?  Is she playing with new
friends that give her cookies?  If it was my kid, I would watch her like a
hawk and see if she was eating some snacks she shouldn't be.  Next I would
examine what you are feeding her and see if there is some hidden gluten in
the food.
 
Some doctors can be real jerks.  Before I found out about the GF diet, one
dr. said that I was imagining things and prescribed tranquilers and sent me
home!!!  I wouldn't spend another dime with that guy.  Find another dr. by
contacting the local celiac support group. They can tell you who is
sympathetic and can help you.
 
=====
 
We are just starting down this path for my daughter, 6 1/2, who has
autism, and since December has had dermatitis herpetiformis (repeatedly
misdiagnosed). I am not a medical professional and cannot give advice on
most of what you ask.
 
But the stool you describe sounds okay to me. I have heard that,
contrary to what most of us believe, healthy stool should be soft,
unformed, or *very* loosely formed. Just what I've heard.
 
Doctors often don't know as much as we'd like them to, and too often, in
my experience, put on an act to maintain their position of authority.
 
=====
 
I can sympathisize with you - my mother felt the same way.  Let me know how
the responses turn out - I can believe they treat you that way.  If the
answer is simple and doesn't require a drug, doctors are quite arrogant|
 
=====
 
I am hoping that our resident doctor will answer each point
medically for you. Meanwhile, you have done the right thing
in my book. Don't let the doctor push you around!
If your child responds positively to the diet, great! Keep it up.
 
=====
 
I think your Doctor's idea about getting the original slides is
excellent.  My biopsy report was read by three different doctors with
three different opinions.  I know three is an odd number - one said
low positive.  The third doctor who said it was positive said he
would also like to see the original slides.  I would recommend you
have him read them and if not satisfied bring them to another doctor.
 
=====
 
In  _The Allergy Self-help Book_, page 16, there is mention that "long,
silky eyelashes--unexplainably--often coincide with allergy."
Also, while I myself am not celiac, I have been GF for over a year with
great success (hence the reason I lurk on the list for recipes etc.).
In fact, after countless (often annoying) visits with doctors, I still
don't know why I can't tolerate anything with gluten. I do have a few
 food allergies, but have never tested positive for wheat, rye, barley,
etc. (including rice), but if I eat any one of them I start to slur my
speech and shake.I do know that if one is allergic to a food, a reaction
may be made worse by introduction of that food after it is avoided for
a long time. In other words, yes, if she is allergic to wheat she could
have symptoms if, after being GF for a year, she consumes wheat-based
cookies. For me, being GF, regardless of diagnosis, is not too big a
price to pay for being healthy. Keep in mind that the above is just my
personal opinion. Good luck.
 
=====
 
<<This doctor was not concerned about this. He made me feel silly for being
concerned. He said that as long as there was any form at all to the BM, as long
as it was not liquid, it was fine. Does this sound right to you?>>
 
NO NO NO!    Try another doctor!    I have had the type of stools you
described and what cured it was a course of antibiotics.   ( I believe that
celiacs may be prone to certain bacterial overgrowths).     I have three
times had a refractory malabsorption while on a gluten free diet that only
resolved after a course of anitbiotics.   At any rate, the type of stool
you describe is certainly NOT normal and the doctor is being abusiveif he
belittles you for being concerned about itl    TRY ANOTHER PHYSICIAN - one
who does not have an attitude problem.
 
>From what I've read, dental enamal defects are a classic sign of celiac (or
other malabsorption).
 
Any time you strictly avoid a food for a long period and then suddenly eat
a large amount of it, it can cause problems.    This is because your body
down regulates the production of specific enzymes needed in its digestion.
But this should be temporary if it's not due to celiac or allergy.
 
<<her dramatic response to the GF diet. (For example, after not
growing or gaining for two years, she gained three pounds in three weeks.)>>
 
This is a strong indication that she should avoid gluten whatever the
reason (celiac, allergy, whatever) she reacts to it.
 
GET ANOTHER DOCTOR!   It sounds very much to me like yours is trying to
mask his inadequacies with arrogance.     Doctors sometime get  excellent
reputat
[note: rest of transmission not successful]
 
=====
 
The end!