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top
Adverse reactions to
starting the gluten free diet
Jump to research
and theories
Jump to
reperfusion theory, Jump to
gluteomorphin withdrawal theory
Jump to
schizophrenia research
Case discussion - 8 year old girl hears voices upon withdrawal of gluten and
later milk
Family history - This an only
child, mom is vegan. The little girl is vegetarian and therefore did not
wish to take cod liver oil. Dad is
involved with a non profit organic testing lab so they are very aware of
toxins.
Note: There is schizophrenia in the extended family including
fatal violence
Links
to similar situations, comments, etc. Will update as I
find more.
Professional comments posted anonymously
unless permission is given to use practitioner's name.
Feb 20 approx -
Gluten free diet initiated for chronic diarrhea, improvement
by 1 week, negative tests next week, then removed lactose also. Cross
contamination is very likely due to lack of info.
Friday, March 6 date of first email to Olive Kaiser
www.theglutensyndrome.net
I've been trying to find out what is causing my 8 year old's chronic
diarrhea which has become worse in the last few months.
I
took her off gluten as an experiment 2 weeks ago and in the first week she
had minor improvements, not 100%, but enough that I wanted to have her
tested.
So after two weeks off gluten she came back with negative
blood test results.
Our doctor wanted us to keep her off gluten and take out lactose until she
could see a specialist (which will be in two weeks).
Close
Voices appear
around 10 day to 2 week mark and worsen over a few days, Child is sobbing,
knashing teeth, clenching fists, tearing tissues for hours
Same email continued:
About a week ago she started to complain of a negative voice in her head
that seemed to be around all of the time and was bothering her and wanted
to know if it was normal. I told her it was and it should pass.
It never
passed, she talked about it all day every day. She began crying over it
frequently, seeming to be tormented by it and the things it was saying.
She would walk around with red eyes, following me to tell me what it was
telling her.
Two days ago she became completely inconsolable, sobbing, knashing her teeth, clenching her fists, tearing apart tissues for hours.
She refused to watch tv or listen to books on tape, her two favorite
things to do, because they "made it worse."
I looked up gluten withdrawal
on the web and found some a cases of toddlers having severe tantrums, or
heroin-like withdrawal after being gluten free.
Close
Gluten is reintroduced with some temporary
unstable relief.
Continued:
We called her doctor and she suggested giving her gluten. This was
yesterday. I gave her 4 girl scout cookies and within an hour we went for
a walk and she was laughing, smiling, climbing trees.
By dinnertime she
was regressing back to the voice and the whimpering, but not at the level
of the day before. We gave her
whole wheat pasta for
dinner and she was quiet for an hour after dinner. She went to bed a
little whimpery but not hysterical.
This morning she had fruit for breakfast and was slightly bothered by the
voice but said it was "repeating the same old stuff" and was saying, "um,"
like it couldn't think of anything new. She still wanted it to go away but
wasn't crying as in days before.
I hope this information helps you and others. Our doctor had never heard
of this before but trusted our observations. We still have to wait two
weeks to see the specialist, but hopefully having her back on gluten will
help with a diagnosis.
I'm so frightened this experience that I want to say good-bye to gluten
for good but I dread the next time we take her off it which will be gradual,
for sure.
If you have any advice for us we would greatly appreciate it.
Close
March 10 Avoids concert, diarrhea worsens, voices, ER recommends
psychotherapy
Tuesday, March 10, 2009:
Since going back on gluten on Thursday Dylan's emotional symptoms have
improved but not cleared completely, diarrhea continues.
She had a rough
night emotionally Saturday, begging me to make the negative thoughts stop.
Sunday she was great all day mentally,
bouncing off the walls with joy, it seemed.
That night we took her
to a concert at her music school and she wanted to hide in the bathroom
for the whole concert because it felt better in there, the noise was too
much. This is not typical for her.
Yesterday she wasn't crying or
hysterical but complained about her "ego" constantly saying it was killing
her so I made an apt. with her pediatrician.
My husband and I
went with her and I gave her the whole story, complete with a history of
symptoms I had printed and a copy of the home page of your website. She
decided Dylan definitely needed help and after a few calls decided to send
us to
Children's Hospital
in Boston, Emergency
Room. She thought this was the only way we could get help in a hurry and
they might have every type of specialist there to help her.
We were there from 6 pm until 2 am so we didn't get home and to sleep
until 3 am.
She never saw a GI specialist, just the attending and a psych
person (not a doctor).
I brought more copies of my notes which only the
psych person read and I told them all about our theory of gluten
withdrawal. No one had heard of it and it appeared that was the end of
that.
They took blood and checked her thyroid, blood count and
electrolytes - all normal. They did an EKG and gave her a psych exam at
1:30 in the morning, plus an interview with me.
Their conclusion was that
she needed to attend an intensive two week psych program with other
troubled kids. We said we'd sleep on it.
There's no way we're sending her to the program they have in mind for many
reasons but our biggest concern is that no one is looking into the gluten
withdrawal. "Never heard of it" is their mantra.
She's even better mentally today
as we've continued the gluten but her diarrhea is getting
worse.
We still may seek out a psychiatrist to help her through this but
we're looking for one who is holistic, who may consider her GI issues as
related to the stuff going on in her brain.
I guess you had told me we probably wouldn't find any documentation of
gluten withdrawal. Not giving up, just continuing on our journey
to health for our daughter!
Close
March 11 and 12
Child avoids social contact with peers
March 11 History of tactile issues, continuing voices and
social avoidance. Diarrhea worse. Mom has a complete diary.
Comments from Olive Kaiser
Mom Thursday March 12
This is very interesting. I can’t say my daughter is sad or feels down.
She says
she’s avoiding seeing large groups of people because they give her ego too
much ammunition so it becomes out of control saying negative things about
everyone around her. She also says it’s “too much noise” which she has
never had a problem with before.
She has always wanted to be naked!!
It is is struggle to get her to wear
enough clothes. In the winter she insists on wearing shorts and camis or
short sleeved shirts as long as we’re inside (and would wear them outside
if I didn’t make her put on more). She has stopped wearing jeans and other
stiff clothes, preferring sweat pants or soft shorts. OH!! She cries when
I make her wear gloves or mittens. She puts up a huge fight. I’ve never
understood how gloves can make someone cry, now it makes sense. This
information gets better every day.
The good news is I’ve written down everything that has gone into her mouth
for the past month, also every GI symptom day by day and now every
emotional symptom. I also have a list of things her “ego” says to her.
Other good news from today – her therapist has celiac!
Mom Thursday March 12, 2009
I
shouldn't be up doing this but I can't seem to let go of this now that the
flood gates have opened. I've been thinking about the tactile dysfunction
all day and for some reason it really gives me hope that a lot of our
daughter's
nagging issues might start to resolve themselves if we get her on the
right diet. I saw some connections between tactile dysfunction and bad
handwriting, so that might explain her handwriting issues and why she had
a really hard time holding cutlery properly.
It's all just very
interesting. Her diarrhea is even worse and her bowels leaked today
while
she was running outside. Really can't wait to take her off gluten.
Close
iHistory
of bad teeth,
causing infection near eye. Father's alcohol
intolerance spreads to hangover effect after normal meals, responds to amitriptyline.
Fatal schizophrenic violence in Mom's extended family.
Mom Thursday March 12, 2009
As if I haven't taken enough of your time, I'm wondering about her teeth.
One of the biggest problems of her childhood was her teeth. The
enamel of
her baby teeth wore away so quickly she ended up with two abscessed teeth,
one of which led to an infection that spread dangerously close to her eye
and she ended up in the emergency room. Those two teeth had to be
extracted and she had multiple fillings at a very young age. I've seen
some references to tooth enamel and celiac and I wondered if this was
referring to baby teeth or permanent teeth. Her Dad has terrible teeth too
but we thought that was his British genes.
I haven't mentioned this up until now but her Dad
has suffered from undiagnosed
health problems. He has developed an intolerance to alcohol,
not the type
common to Asian people, but he gets a terrible hangover after a very small
amount of alcohol (any kind). That problem was easy enough to solve,
he gave up drinking but then he began having
problems after eating. For at
least a couple of years he began to feel very unwell he describes it like
a hangover and it was very debilitating. He saw a GI specialist who did
multiple tests for H Pylori and other common GI problems, endoscopy,
colonoscopy and nothing was ever found. He wondered if different foods
were causing the problem because he seemed to feel sick after eating. As a
last resort his doctor prescribed 10 mg. of amitriptyline (an
antidepressant) and it worked like a charm. As long as he takes it he has
no sickness, but no one can explain to him why. His doctor said "it just
works for some people."
Just wondering if there could be a connection?
between his undiagnosed
illness and our daughter's health issues. He would love to know what is wrong
with him so he can stop taking the drugs.
Close
Diet clarification Voices appeared in an initial GF trial that was
likely cross contaminated. How to wean her back off gluten?
Friday, March 13
There's one thing I'm
wondering when it comes to taking my daughter off gluten. How do you know if
your child is so sensitive they can't have any contact with gluten
(separate cutting board, toaster, etc.). When I took her off gluten I just
eliminated the obvious gluten and I was feeding her wheat free oat bread
because I'm still not clear on where oat falls. I keep hearing things
about skin products and even homemade play dough (which she uses).
I'm already trying to figure out a way to wean her off gluten. Right now
my plan is eliminating a gluten meal a week. Right now she's having gluten
at 3 meals a day, so I would do two meals for a week and then one meal for
a week, but after that time I don't know if I need to eliminate all
contact with gluten.
Also very confused by corn, soy, dairy, etc. If it were you, would you
remove these from her diet? I've ordered at least 3 books about celiac,
maybe I should look into books about the other food intolerances.
Close
March 16
Child still struggling, Vojdani diagrams
explained to parents
Monday, March 16
Today I kind of hit rock bottom after a tough
morning of watching Dylan struggle and then a fruitless afternoon of
making pointless phone calls to doctors' offices to try and get her more
psychiatric help. But I had a good productive cry for the first time and
now I'm just exhausted.
Close
March 18 Voices continue. Severe
constipation found on x ray. Celiac, gene
tests run.
Here's the latest: Our
daughter
had an x-ray done this morning at Mass General and her colon was
completely compacted with constipation. In the doctor's words, "She's
crazy constipated!" He showed us the x-ray and it was frightening.
So he
said there's two possibilities - either she's created this constipation
with her personal habits (holding it in or not drinking enough) and that
created the diarrhea, or it's another symptom of gluten intolerance.
He
just happens to have celiac himself and wasn't diagnosed until he was
35.
He ordered blood tests for genetic work and allergy tests, sent us
out to buy magnesium citrate and Miralax and advised us to feed her
anything she wants - gluten and lactose until the next visit and
continue her on the Miralax for the next month to clean her out. When
she goes back in to see him on April 22 she'll do a lactose breath test.
He says celiac is still a good possibility but he doesn't want to do the endoscopy and colonoscopy unless he absolutely has to and wants to see
if cleaning her out helps resolve this and then see what happens.
I don't know how I feel about
all of this. I'm very skeptical about the self-induced diarrhea because I
looked up all the reasons for it and nothing really fits - she eats lots
of fruits and vegetables (high fiber, high water content foods), she's
very active, she goes to the bathroom at least twice a day.
I remember
what you said about your daughter having severe constipation so I would
love to hear what you think and what you experienced. This isn't something
I was expecting so I'm trying to process it.
I guess the doctor's feeling
is that he wants to rule everything else out before he gives her a
diagnosis of gluten intolerance because he describes it as a pretty awful
thing to have to do to a kid, from his experience.
I offered to explain
testing but it didn't work out for tonight.
Later that night.
Our daughter is
having a particularly bad night emotionally.
Olive's response:
He's right. The
constipation could easily be the
gluten intolerance.
My daughter, and husband and several others in our family have that
type, severely. Prunes help and there are some herbal tablets,
like Herb Lax from Shaklee and one from the drug store that help my
husband, although I think Herb Lax might have gluten in it (to keep
in mind for later).
Remember how I explained
about the antibodies binding to innocent tissues that "look like"
gluten? Well, that molecular mimicry can happen to the nerves in the
gut and cause them to not work, essentially paralyze them or partly so.
Also the gluteomorphins can bind to the opiate receptors in the gut as
well as the brain. All this can mean the peristalsis, or the wave like
motion of the gut is interfered. The food doesn't get moved
along like it should hence severe constipation. Sometimes all that gets
through is the liquid, as the dr mentioned. And if this has gone on for
a while naturally there would be a lot of toxicity.
I hope those tests
give you a positive. Be prepared that most likely they will not. There
are
other antibodies
including
gluteomorphins
that will have not been tested so from the wider gluten syndrome
perspective a negative is inconclusive. (More
references to
gluteomorphins
and other
gluten opiods.
However, in her case, if she is positive he will want to do an endoscopy.
That is because he has been taught by the celiac community very
definitely that if someone is reacting to gluten they will have villi
damage, even if it is submicroscopic damage, or only increased
intraepithelial cells.
According to other researchers including Dr. Vojdani, there is a much
bigger picture. Villi damage is
only one of the many places including
the
brain and nervous system in particular that severe damage can
occur. Often
when the damage is elsewhere,
the villi are not damaged.
So if he wants to do an endoscopy be aware that the biopsy just checks one possible
place of damage. You know for sure she is having problems in other
tissues, namely the brain and nervous system. She may have villi damage
but more than likely she might not. If she is constipated because
of gut nerve damage, a villi biopsy won't find it.
So if you do a biopsy be prepared for a negative. However the
doctor may have other unrelated reasons he wants to examine her gut,
such as for infections or other types of damage.
Dr. Vojdani and others insist that a properly run positive antibody
test of itself indicates that the immune system is mounting a reaction
to gluten.
Regarding the gene test, be aware that there are
differences in gene tests in the amount
of information they report. Also one researcher, Dr. Ken Fine,
believes there are
more genes involved than the recognized
celiac genes and another researcher, Dr. Vojdani, believes the genes
predispose for a reaction but
they are not needed, as toxins
themselves can trigger an immune response. We can go over those
perspectives in a phone call so you will be prepared for the results of
the tests.
Close
March 19
Colon cleansing ramps up voices to "awful". Barely making it hour by hour.
After spending the day
watching Dylan suffer mentally (we think everything that's being kicked up
by this colon cleanse is making things worse) I was feeling defeated and
hopeless. Trying to imagine another month of this just made everything
look dismal. I've felt powerless and lost all of my motivation and
optimism.
So then I started thinking about what I would do if I could take over this
situation. For one I would overhaul her diet and clear out the gluten
completely. I would stop obsessing over a positive test and work toward
making her feel better. I realized the only reason I'm feeding her gluten
at all is because the doctor told me to so that he could see if he could
get a positive test in a month. A test that's not reliable to begin with.
I've gone over and over the new diagnosis of fecal impaction with overflow
diarrhea. Everything I read says it's caused either by lifestyle or a
disorder. Nothing about her lifestyle fits. The causes are an unhealthy
diet - refined, low fiber, low fruits and vegetables with little
hydration, plus inactivity. Also a lifestyle change or avoiding the
bathroom for a variety of reasons. None of those fit Dylan - she eats a
whole grain diet with lots of high water content fruits and vegetables and
is typically extremely active.
So I'm flexing my parental muscle. I called Iain at work and told him I
want to take her off gluten NOW, not in a month. He supported me but
didn't completely agree. He feels that this impaction could be the problem
in and of itself and that if we clear it out she might improve. My point
is, if the gluten is causing the impaction, cleaning it out is going to be
fruitless if we're continuing to give her the problem food. I called the
doctor and unfortunately he only had a minute so I had to talk as fast as
I could, but I explained that we can't continue as we are for another
month just for the hope of a possible positive biopsy. He also disagreed
but said the choice is ultimately mine. He did ask very suddenly if I
would be willing to bring her in for a scope tomorrow if there was a
cancellation because he desperately wants to find celiac if he can so that
we know. I said we would do it, but I wasn't willing to wait even a couple
weeks as he previously suggested.
The reality is, a negative test isn't going to mean anything to me. But a
positive test would erase a lot of doubt. Regardless, she's coming off
gluten so that I can try to heal her back to health with motherly
instincts rather than faulty tests. For the first time in many weeks I
feel empowered and hopeful. I don't know where I would be without your
help and guidance and all of the information on your website. I will look
forward to the day when I can tell you Dylan is feeling good again.
I recommended contacting
an biomedical autism specialist for guidance through the withdrawal.
7 hours later
We’re in survival mode
here. The
colon cleansing has amped up the voices to a point that we can
barely handle, it’s awful. We can’t make any plans, just trying to get
through hour to hour.
Close
March 20 Still unstable. Will limit her to one gluten
meal a day.
Thanks Olive. I called ___ (Autism dr on recommended list) today but
they’re closed for the weekend, which is a shame because Iain is home
today to help me. We couldn’t get in for endoscopy today so I don’t know
what’s going to happen.
For now I’m going to limit
her to one gluten meal a day so it’s in her system but limited.
Talking is a little tough right
now with our daughter so unstable, sorry.
Close
March 21 and 22, Weekend - Screaming, growling,
attacking couch, parents distracting with bike rides. Plan to call ____(an
autism aware doc) on Monday.
I ordered a gluten and casein stool test from Entero Lab so at least I
feel like we're doing something.
When our daughter is home alone with us she
spends all of her time screaming, growling and attacking the couch (her
ego). She can control it when she's around other people so right now she's
riding bikes with her friend who has cancer so Iain and I are both taking
a break from watching her thrash all day long. If nothing else it got her
to sleep earlier last night.
I have her on one gluten meal a day and
Monday I'll call the doc in Wisconsin. Iain's now bottoming out from fear
and would love to get her in for an MRI but for now he's driving to the
hobby store.
This is excellent information. I will read through all of this and check
it out. I got the email from XXXX and I’m making a shopping list right
now.
As soon as she started to fuss this morning Iain took her out for a bike
ride in the sun. We’re going to try a museum this afternoon.
Close
March 23
Rough, 1st day gluten free, epsom salts and
clay baths, fish oils, bowels are moving.
It's been another rough day but it has ended well.
From the moment her eyes opened this morning our daughter has been complaining,
shrieking, moaning, yelling out over her "ego." It's very jarring and
heart-breaking, not to mention tiring as we're trying to home school. She's
been having lots of movement in her bowels today too.
I called the doctor in Wisconsin and set up a webcam consult for Wednesday
but will have to change it because my husband has to go away. At least we're in
the system now. I left a message for the neurologist at Mass General that
you sent me so we'll see if she calls back. I also booked an appointment
with an acupuncturist for her for Friday after I read an article about
acupuncture being helpful for moving opioid peptides out of the colon
(!).
After sitting through a grating dinner of our daughter alternately eating and
shrieking I crawled back to my laptop to research the one thing I can't
place - her voices. I understand all of the connections between gluten and
the brain, but all of the research seems to be about autism or ADD.
Nothing seemed to speak to her specific problem. And then I found it:
http://naturalcareworks.com/Default.aspx?ContentPageID=282
Hopefully this link will work for you, but it's the first place where I've
actually seen "child hearing voices = gluten intolerance" in language that
I can understand. I was elated. And then I received the lovely email from
_____, and it further confirmed my theory.
Today was her first day gluten free (I've been easing her off) and
we've been doing the epsom salt baths, fish oils, aromatherapy and tonight
she had a calcium bentonite clay bath which she loved while I read to her
by candlelight. I feel like we're finally moving forward rather than being
stuck.
Hopefully there will be more good news to come soon!
Close
March 27 Friday Still struggling. Child is vegetarian
and prefers a substitute for cod liver oil.
No, of course you haven’t offended us! To be honest I’m completely burnt
out. Between looking after our daughter, relearning how to feed her, taking her
to appointments (accupuncture today), and trying to keep her up to date
with school and handling the barrage of questions from friends and family
I have no energy left. Plus my husband has been away so I’ve had all the house
and animal duties. I should also mention she’s finding it hard to cope
with all of this and her behavior has been challenging.
When I have more energy I’ll give you a full update (she’s doing ok) but
to answer your question she is a vegetarian, not vegan. She’s not willing
to take the cod liver oil for moral reasons so we’re trying to replace
that. We’ve also shifted her off of the Miralax because it makes her
nauseous so she’s taking two natural products.
Thank you so much for keeping in touch, we appreciate it as always.
Close
March 31, Tuesday - Much better - waiting for tests to return.
Biomed specialist consult on hold.
Just wanted to let you know that Dylan is so much better! She hasn’t
mentioned her “ego” in TWO DAYS which is stunning. She’s talking non-stop,
riding her bike for miles, watching tv again, reading again, it’s amazing.
I don’t think she would say she’s all better yet, but if I don’t bring it
up neither does she.
I sent in her stool test to Entero Lab yesterday so we’ll have to wait for
that. I now own a copy of Healthier Without Wheat, which I started today,
and soon we’ll be going back to Mass General to see the pediatric GI
doctor who will have the results of her genetic testing, allergy tests and
will give her a lactose breath test.
I think we’re going to hold off on speaking with Dr. XXXX for now since
she’s so much better. We have another family emergency which needs our
attention – Iain’s nephew needs to have open heart surgery (he was born
with a heart condition and is now 21) so I don’t think he could handle any
more right now.
Close
April
3, Friday - Nightmares, some growling, acupuncture
Thanks for the great
information, I’ll have lots of reading to do. It’s funny, a few weeks ago
I was watching an episode of “The Raw World” show on you tube which is put
out by Matt Monarch and Angela Stokes. He was testing a new product in
their online store – Living Green Clay and he had it smeared all over, so
he was taping the show covered in clay. There was a break in the show when
he rinsed it off and came back to show the results and it was very
amusing, he was stunned by the results. He kept saying “Oh my GOSH, this
is crazy!” It was very entertaining, but that clay always stuck in the
back of my head, and now here it is again. When I went shopping for clay
they didn’t have that brand so I bought the only one they had for external
use and that’s what Dylan has been playing with in the bath. I will
definitely look into it! Thank you for contacting her.
So we’re at a little bump in the road. The week started out great, she was
happy and active, and the last three days she’s developed bad nightmares,
which I’m sure is not a coincidence, but she had one that plagued her all
of yesterday and really knocked her down a bit, on top of having a cold.
She has a tendency to growl to herself lately and she explained that it’s
not the ego, but just things that are bugging her. I have her on herbal
laxative tea every other night now, and at bedtime I give her “toothbrush
acupuncture” and an abdominal massage. The toothbrush idea came from the
acupuncturist, she’s having me stroke it down either side of her spine
and down her outer arms and legs and tapping above her tailbone. The arms
and legs are for the emotional symptoms and above the tailbone is for her
colon. The ab massage is a deep little circles in a clockwise direction.
We’ve switched her shampoo and at the moment I’m baking her bread from a
Bob’s Red Mill mix before she goes to acupuncture in an hour.
Oh, I’ve also ordered a book I had never heard of, but was mentioned in
Healthier Without Wheat. It’s called Full of It and it’s about the gluten
brain connection, a must for us.
Close
April 5 and
6 - Child socialized all weekend. Some voices in evening, cleanup
time, and when spinach is eaten. (Note: Spinach breaks down into
morphins.) No nightmares for 2 days.
I've had a long but
wonderful gardening weekend while Dylan socialized all weekend.
Our daughter hasn’t had a
nightmare in a couple of days. At the moment she complains a little of the
voices in the evening, but also at clean-up time and whenever spinach is
on the menu. Most of the day she is happy and busy. She’s still going to
acupuncture which makes her incredibly sleepy. Her GI system is still
very unpredictable. She’s definitely going a lot, no problems there, but
she complains of anything from diarrhea, leaking, and feeling clogged up,
plus many times it’s normal so there’s still a lot to be worked out.
Soccer starts soon, so that’s good news!
Close
April 11,
Saturday - child doing well, blue greenish round things in stool.
Sorry this is not the most pleasant subject, and I will preface this
by saying that our daughter is doing great - her creativity has blossomed this
week and she's back to listening to audio books with relish - but here
goes. This past week she seems to be doing a lot of colon flushing. I've
been giving
her a fruit/fiber supplement made with prunes - a very concentrated paste
from the health food store and it seems to be working. She's had a lot of
activity and called me in once to the bathroom, slightly alarmed. She told
me there were blue things in her stool so I looked and saw a very strange
bluish green roundish thing in the stool. A very odd color which didn't
remind me of anything she had eaten. I didn't think to examine it any
closer and then she reported another one later, which I didn't see. It
occurred to me that the only thing it reminded me of was pictures I had
seen of gallstones after a liver/gallbladder flush. I realize that's a
wild guess and I could be completely wrong but I'm very curious to know if
there could be any connection or if you'd heard of anything like this.
It's just very strange.
I commented: Blue!! hmmm. Very little in
the body is blue except eyes. Usually gall bladder flush stuff is green
isn't it?" I recommended collecting a sample and consulting a specialist
possibly for testing.
Mom's response: Thanks Olive! It was really more
green than anything (blue to Dylan). Figured it was a long shot.
Close
April 14 and 16,
Tuesday and Thursday - Child is fine, eating non stop, stool test positive
April 14, Tuesday
All is well here - Dylan is a machine, between art projects, scootering,
chatting online with friends and back to soccer she is busy. The funniest
thing is her appetite! She is eating non-stop! I've taken her off all
laxatives since they're really starting to bother her. The accupuncturist
massaged her belly and felt that the blockage was only at the end of her
colon. I received the book Full of It and think the person who may really
benefit from it is Iain.
April 16 Thursday
We heard back from Entero Labs today. Dylan's anti-gliadin IgA count was
71 and her anti-casein IgA count was 23. I'm sure you understand this
better than I do, but there was a very clear recommendation remove gluten
from the diet, and for the casein it was a little more confusing but
seemed to be saying there's not a lot of research in this area but they
recommend taking her off it.
I've spent so much time researching gluten I know almost nothing about
casein other than what you've taught me about caseinomorphins and how they
act on the brain the same way that gluten does. I'm happy to take her off
but I can feel the resistance around me from family members to wait and
see what the doctor says. I also don't think my family is taking me
seriously about getting themselves tested for gluten intolerance. We'll
see.
I'm pleased, was just unprepared for the casein results.
Close
April 22,
Wednesday - Disappointing dr visit, negative celiac antibody tests,
susceptible genes
I'm trying to calm myself
down after our latest doctors visit. I was so disappointed. Despite the
fact that he found that Dylan's colon has cleared, and I told him her
mental symptoms were gone, and she told him how much better she felt after
going off gluten and dairy, he was unmoved. After I gave him printouts of
the Entero Lab results he said Dr. Fine is considered a "charlatan" and
that all foods cause an immune reaction in the gut. I know you told me
he'd say something similar but I was hopeful. He said her blood tests were
clean, lactose test was negative, but her genetic test puts her in a high
risk group. He said he can't give her a celiac diagnosis without a biopsy,
which he assumes will be negative but he wants to do it anyway to offer us
that reassurance that he thinks we're looking for. I told him I didn't
need to know if she had celiac because she has gluten sensitivity that may
or may not ever affect her small intestine.
He didn't seem at all interested in the fact that her mental symptoms had
cleared when we changed her diet and wanted to know what psychiatrists
were saying about her. When he learned I had taken her off dairy he said
he thought that was cruel (but quickly corrected his wording) since she's
already off gluten because these are the foods the American diet is based
on and there is no evidence that dairy is a problem (her blood test was
negative). He said eventually she would put herself back on dairy to
challenge us if we didn't have evidence.
What he doesn't realize is that Dylan has been the biggest cheerleader of
her new way of eating because of the way she feels and she tried to tell
him that. I gave him a printout of your home page, the email from Dr.
Hoggan and an article about another boy who heard voices and was cured
going off gluten.
I progressively became more and more upset but tried to smile and keep it
together, not because he was changing my mind about anything, but because
he seemed completely close-minded about everything I said. He didn't look
at any of the things I gave him, I mentioned the book Full of It and he
smirked. The final straw was when he asked if there was some history of
mental illness in the family, some "crazy aunt" (if he had read the
paperwork I had filled out he would know that it was my cousin who killed
my uncle). Obviously that was the wrong thing to say about something so
sensitive but at that point I just wanted to get out of there as quickly
as possible because I was holding back tears.
We agreed to an endoscopy because the doctor said if they find something
(which none of us believe they will) then we can "feel confident" in the
diagnosis and he will actually treat her as a child with serious health
condition and write letters for her to make sure gluten stays out of her
diet forever.
So there's the latest, I'll calm down soon enough and focus on my healthy
happy girl. Sorry for this, but I thought you might want to know.
Close
May 13 Wed, Child was fine, voices/bowel
problems recur on vacation despite GF efforts.
Just wanted to let you know
we're back from New Orleans but are very busy preparing for my husband to get
his honorary doctorate this weekend in Maine. Lots more people coming in
from out of town than expected, including his sister coming from
Bangladesh - big thrill for all of us!
Our daughter was doing fantastic until our trip. Finding her gluten free and
dairy free food there was tough and there must have been some cross
contamination somewhere because her "ego" came back during the trip at
bedtime and hasn't totally cleared out. My husband also took her out to eat this
weekend while I worried at home, and this week she's back to passing clear
liquid and leaking it in her clothes, along with the voices. Feeding her
at home is no problem, it's just eating on the road that's a problem.
After everyone clears out we'll book our apt. with the doctor and give you
a call.
Generally she's doing great, though, so no worries.
Close
NOTE: Professional comments will be
posted anonymously unless permission is given to use practitioner's name. The purpose of this page is not to
solicit free advice but to find practitioners qualified to treat this type
of reaction, and provide and possibly exchange information between
practitioners who may be faced with a similar patient. It is
the goal of this website to provide support for patients and practitioners
in these situations.
If you are a practitioner and
wish to contribute privately or publicly please contact Olive Kaiser
jka8168@sbcglobal.net or
info@theglutensyndrome.net or call
630-628-9126 or 630-808-2079
206-264-1111
Why? These reactions
are not well understood but often
gluteomorphin withdrawal is suspected.
Go to theories and research.
UPDATE: March 12, 2009
Here are links to
several searches of
adverse reaction forum posts ,
more ,
more
Below is an update on
adverse reactions.
Rarely a patient may experience temporary symptoms that resemble
"withdrawal" near the start of a gluten free diet. More...
This reaction is very uncommon, but a
few patients (adults) have experienced depression or crying spells
at the start of the gluten free diet, or shortly into the diet.
The reaction has been severe in a few cases. In the case of
children, behavior may significantly worsen for a time, and this
reaction is more frequently seen in autism circles. Firsthand
accounts indicate that this appears to resolve eventually and the
patient usually does well once this initial reaction is over.
It is speculated that the "withdrawal"
type symptoms are due to the removal of certain types of gluten
or milk "pieces" that have an drug like "opioid" structure, similar to
opiates. They affect the brain in such a way that their removal
triggers an apparently temporary
reaction that resembles drug
or alcohol withdrawal. The pieces of gluten (or milk) are
called
gluteomorphins (or sometimes called
gliadorphins) and casomorphins (milk).
Speculation regarding reduced blood
flow when gluten is consumed and increased "normalized" blood flow
when gluten is removed is another phenomenon some professionals
suggest. It is known that in some situations such as
hypothermia or heart events, tissue damage may be inflicted when
previously constricted blood flow returns to normal. At this time there are no researched answers.
This phenomenon is not well known or well studied.
There is one such reaction in which a
senior in frail health unsuccessfully attempted suicide.
The patient continued the diet and once the reaction abated, the
patient improved dramatically compared to his condition before the
diet was implemented.
Another case is on record in which
a number of factors muddy the picture somewhat. A positive
testing adult
patient removed several foods that are cross reactive with gluten.
Several
months later she also removed gluten. At some point she also
discontinued an antidepressant possibly too quickly. A month
after going gluten free, in the autumn, a crying spell reaction
occurred which also coincided with the seasonal
affective disorder season. Two weeks into the the crying spell
the patient resumed daily consumption of gluten
and attempted to control
the situation with medications. The patient's already fragile
mental and emotional condition appeared to
dramatically worsen after gluten was reintroduced. After a
number of weeks of trials of various medications, she stabilized
somewhat and over several more months gradually improved enough to
able to ease back into her job. However she continues to cycle
periodically and is now diagnosed with bipolar illness.
This website encourages further
research on this rare phenomenon and how to manage it.
Other reactions may occur if diabetic
routines, thyroid medications or other treatments need adjustment once the gluten free
diet is established.
Professional care from practitioners
who understand the gluten syndrome is strongly advised in these
situations.
While these reactions are quite rare,
this website is looking for firsthand accounts of significant
adverse reactions to the gluten free diet, both initial reactions
and gluten challenge or serious "cheating " reactions in order to
present the information to the research community. Email
jka8168@sbcglobal.net or call 630-628-9126.
A collection of these reactions is
found on the
Adverse Reaction page of this site.
Here are links to
several searches of
forum posts ,
more ,
more
Close: More...
~~~
Below is a summary of
responses received to the following post on the ICORS celiac list,
December 2007. Thanks to all who generously contributed their
experiences and time during a busy holiday season.
Here is the original
question
Hi group,
Does anyone have experiences or research that indicate possible adverse
reactions to going gluten free?
I am aware, painfully, of bad reactions from going gluten free and then
going back to gluten either as a gluten challenge or
indiscretions and going on and off the diet.
My question is about just going gluten free to begin with, particularly
emotional/depression/psychological issues, but I include any negative
reaction in my question.
Any adverse combinations of other treatments simultaneous to starting the
GF diet?
I will summarize.
Thanks all,
Olive Kaiser www.theglutensyndrome.net,
www.glutenreactivity.net or
www.glutensensitivity.net
Also click here
for
interesting research that may be applicable.
The responses
April 2008
I add this response after
a conversation with a well known and very experienced, knowledgeable
person with diagnosed celiac disease (the villi damaged subset).
Here are his comments summarized.
"The gluteomorphins (opiods)
create an addictive opiate like response in the brain. This is known
through research. When gluten is removed from the diet, and the
gluteomorphins dissipate, the effect may be similar to withdrawal from
alcohol or other addictive substances. I know because I am an
alcoholic. I have been dry for 26 years. I recognize the
strong similarity between the discontinuance of alcohol and the
discontinuance of gluten."
December 2007
My (then) three year old
daughter seemed to "get worse" for about one month after going gf. She
seemed to experience more pain and distress, and she had terrible,
uncontrollable tantrums. (for example - she managed to get herself out of
her car seat while we were driving, and once on a flight my husband and I
between the two of us could not keep her buckled in her seat. We had to
put her on the floor of the airplane and I laid down on top of her as the
plane took off - it was a nightmare). after approx. one month gf we saw a
marked improvement - first in her mood and behavior. It took longer before
her gi symptoms got better and she resumed growing. Hope this info is
helpful, Lynn
Thank you so much for
sharing. Knowing of your daughter's severe reaction is very helpful to us.
And also that it resolved in time. Did you find any strategies that you
thought helped her through it?
Yes –I had to find a way to calm her – bubble baths
and soft lighting and music seemed to help calm her. Then I would give
her a little pepto bismol if she was complaining of pain, or feed her
very simple food such as plain white rice or yogurt.
My son – who is also celiac – was helped more by
distraction when he had pain – we would put him in front of an engrossing
movie and also give him either some pepto bismol or some very simple foods.
My daughter is now 14 and completely healthy and
normal in every way – it took her about 2 + years to fully recover after
going gf
~~~
I suppose the only people who
will Email you are those who had some sort of bad reaction. The only bad
reaction I had was when I tasted GF bread for the first time. Ugh. Now I
bake my own.
I began to feel stronger and
more alert within two weeks of going GF. I went from being someone who had
to take two naps a day to hiking to the bottom of the Grand Canyon and
back up the same day.
~~~
There is often depression
associated with a new diagnosis of a chronic illness, and also
anxiety/depression/anger/hostility/resentment can affect both the newly GF
and their family/friends. The GF can be very hard to adapt to, and can be
viewed as a horrible burden by many.
~~~
I believe, if I remember
correctly, I mostly experienced a period of grief at the loss of all the
good things I could never eat again. Also, I expected to recover almost
immediately, and looking back, it too years. Things I learned along the
way: B-12 stopped the pain in my joints and I quit feeling 90 years old
almost immediately. Omega 3 helped lift the depression.
Presently, I am in the
clinical trial with Alba Therapies for the celiac drug. Honestly, I feel
wonderful. This drug seems to stop the inflammations that have plagued me
even after diagnosis.
I hope this isn't to much
information that you don't need. It is a microcosm of my journey.
I wish you the best, (gluten
free 5 years)
~~~
Was excited @ first to
finally be diagnosed as have had problems for years and was relieved to
finally know how to "start feeling better"- then became increasingly
stressed (frustrated) in learning "what is ok to eat." Still have my
days of feeling down-in-the dumps as the diet is difficult to cook when
another family member wants regular food and doesn't always understand.
And, of course, when I'm really tired - but take a nap and wake up feeling
ready to start fresh. So - depression is as bad as it gets for me.
Also, find a Celiac Support
group in your area, see a dietitian, and find Natural Food store(s) in
your area - we have one in town that is 10 minutes drive away - they have
a whole section in freezers and also in pkg mixes to pasta, etc. Remember,
eating fresh vegetables and fresh fruits help fill the gap. Everyone's
reaction to foods is different. Hang in there!
~~~
I think what happens is a
reaction to a lot of the non-gluten free grains/seeds, etc....I cannot
tolerate most of the stuff. If you happen to have calcium deposits in your
body and are reactive to oxalates, you can really mess yourself up by
eating buckwheat and a lot of other so called healthy foods. I highly
recommend the Low Oxalate Cookbook --for the oxalate info--not the recipes
if you think oxalates might be a problem. Lots of info on the net
about oxalates, but the cookbook is the best source of essential info. You
have to consider other possibilities---not just getting stuck on
identifying every molecule of gluten on the planet. Good luck.
~~~
I have heard that people can
feel worse when they first go gluten free. This can last from a few days
to a few weeks - sort of like a detox reaction? I know when I went gluten
free I felt much worse for the first 3 days and then on day 4 I started
noticing the first of many positive changes - I noticed my knees stopped
hurting. If I had not been warned about the "worse before getting better"
reaction, I might have given up on day 2.
~~~
weight gain!
~~~
I really don't remember
exactly how I was feeling worse - at the time I went GF, 4 years ago, I
felt so bad I thought I was dying. Fatigue and depression were two of my
many symptoms.
I don't remember crying - but
then, I have never cried much. I hold it all inside - that is a good
solution, HA! All I remember now is that it felt worse for the first few
days when I gave up gluten. I probably would be dead by now if I had not
gone GF. I did not have GI symptoms other than reflux.
~~~
When my daughter and I had to
go gluten free we both were eating a lot more than normal. So much so,
that I called the doctor. We just couldn't get full. He told me it was our
bodies' way of catching up
on all of the lost nutrients. It leveled out after a few months.
~~~
Many people will feel
depression or almost a sense of grieving over having lost their best
friend "eating as they knew it". I think this happens more often in people
that did not have severe complications and had the joy of feeling like a
new human after on the GF diet for only a few days, or of not spending
hours in the john or afraid to even go out without knowing where the
nearest lav is. Those people are overjoyed at finding out their cure is
just eating a healthy diet. For those not so afflicted, it can be
upsetting. Also,
college students have a very difficult time emotionally. Their diet
consists of pizza and beer and late night socialization with nothing to
eat and peer groups who don't understand. I think they find it very
difficult to maintain a strict GF diet and then the problems compound
again with fatigue, feeling ill, rejection, a feeling of loss, etc.
~~~
I believe in his book,
Dangerous Grains, Dr. Ron Hoggan mentions that gluten can act as an opiate
on the digestive system. When one removes it from their diet, they can
experience a period of withdrawal which can entail some irritability. I
did experience some mood swings once I eliminated gluten but I have never
regretted it! It does require perseverance so be patient with yourself as
your body adjusts but it is worth the temporary inconvenience. Good luck
and take care.
~~~
Yes, this is common. There
was a thread on the list about this a few months back. It seems that most
of us have some kind of negative reaction. My problem was mainly with
vomiting. Others reported other physical and emotional issues. The
problems clear up within a few weeks to a few months.
~~~
Going gluten-free means:
It took me 10 years to figure out why the same thing happened to me.
With the gluten-free diet, you are no longer eating *fortified*
cereals/breads, which means you are experiencing a reduction in dietary:
iron (ever notice the cereal box says: one serving provides 30% iron
requirements)
and B complex (cereals and breads are always fortified with thiamin,
riboflavin, folic acid, B6 ect..)
So, if you can, find a supplement that contains:
iron (15-20mg) and B complex (10-20 mg for each of the B vitamins)
Also: Calcium, magnesium, vitamin D are important if you are limiting
dairy intake.
~~~
While your body is ridding
itself of toxins, and trying to heal the villi, you usually do not feel so
hot. It can take a year or two to feel better and see a difference.
Depends on how young you are and how long you had CD. People who are older
may not entirely heal, some do.
~~~
I would imagine most people
going gluten free have emotional/psychological effects, particularly those
who must go GF but never had bad symptoms. You are suddenly different from
most people, you are suddenly sort of sick and at higher risk for some
diseases. Also, it is a loss -- a loss you are angry about and must
grieve. The loss includes gluten-containing foods, and also all
spontaneity. Every social gathering or outing of any sort is a big hassle
-- phone calls, special arrangements, making your own food, having the
talk center around the fact you are or are not eating something.
When my 14yo (now 15) son was diagnosed, he had/has some depression and
anxiety about being different from other kids, how he was going to deal
with social gatherings, band trips, school lunch, college. I think it is a
lot worse for kids than adults, who have learned not to care what others
think or say, and who have a much greater degree of control over what they
do. (My son had no symptoms.)
I have read research consistent with what I have personally
seen/experienced -- you could probably find some on celiac.com. I even
read a study that found that the mortality rate of kids diagnosed with
celiac is much higher than expected, due to higher suicides and accidents.
I think that study is on celiac.com, but if not you could probably find it
by googling.
Good points, I've wondered if
the suicide rates with kids are related to cheating and mistake induced
depressions as well or more so than the social issues. My daughter went
into a severe depression when she did a gluten challenge. But she didn't
experience the severe depression originally. Thanks so much for your
reply.
~~~
Your body can actually set up
an addiction to gluten. Why - i don't know. the adverse reactions you
described are those associated with withdrawal.
~~~
I have been constipated after
going gluten-free, otherwise my digestive system has improved, especially
in the reduction of reflux. I have only been on this new and third
restrictive diet for a month but I am a believer and I resisted a chance
to cheat, a Christmas cake that I paid thirty-six dollars for.
Ok, I've heard of
constipation before. Any ideas on why and how you resolved it or did it
just resolve itself in time. Also did you substitute the gluten with the
typical higher carb/sugar substitutes? Thanks so much for your reply?
No reply to this second
question yet. Will post if a reply is received.
~~~
It could
be that in going g.f. you are adding more of something else (non-gluten)
that wasn't a problem before because 1) you immune system was overwhelmed
by the gluten, or 2) you weren't eating very much of it before...could be
almost anything. Obvious are corn, milk, soy. Less likely but possible,
are rice, tapioca.
Bean flours are not all created equal. The Eat Right for Your Type book
lists about 2 dozen different types of beans but there's an assortment
that's not good for each particular blood type.
Potatoes & potato starch in particular can also be the culprit.. I'm a
Type O so when the book suggest white potatoes could be a problem I was
skeptical but decided to go potato free for a couple of weeks. In less
than I week the pain on the outside of my bones was gone...I'd been
starting my day w 3 ibuprofen for that pain for years. The pain I get
from a large baked potato is equal to 1 Tbs. or less of potato starch.
Giving up potatoes was harder than going g.f. but I don't miss the daily
inflammation & pain. I do pass on most g.f. products as well because the
potato starch has such a potent effect.
You have to be your own detective. Attached is a
copy of
something I put in our NL a few years back. It gives info on food diary &
other resource. Enjoy!
~~~
It's been a long time but I
noticed positive changes immediately. They were so dramatic that my doctor
recommended going gluten free without the biopsy since it was before the
blood tests were developed.
That's great. You might not have had villi damage
anyway. A lot of people don't but they are damaged in some other important
places in their bodies. The villi gold standard dx may be very misleading for
those who may have the (serious and also autoimmune) intolerance reaction.
Thanks for your reply.
~~~
Many of us try to replace
gluten with sugar. The result is “Candida Albicans". You'll find many
articles on the internet about it and how to cure it. Have Happy
holidays!
~~~
Going GF was a "mixed bag"
for me. There was both a miracle & a downside. The miracle was
complete amelioration of lifelong (50 yrs.) of severe constipation & IBS.
The IBS was of such severity that I had had 3 hospitalizations for it
alone, over the decades.
But you asked about the adverse reactions/downsides of going GF. I
did suffer increased joint pain & swelling, as well as muscle pain, my
first couple of yrs. GF. It took me a while to consider that it
might be something to do with GF diet. Note, I did have arthritis
pre-exisiting GFD. But it got sig. worse. Anyway, turns out I
am nightshade sensitive in addition to being gluten intolerant. We
had done the GFD
as a family & tried to make it interesting for our celiac &
gluten-allergic (IgE) teens. That meant increasing spicy ethnic
dishes, which they love. So lots more of every sort of pepper than
pre-GFD. Lots more potato & tomato, too. I would estimate that
my personal potato consumption tripled on GFD. That incl. potato
starch used in baking. Tomato doubled, and pepper intake quadrupled.
A nightshade-free diet trial (in addition to GFD) with subsequent
challenges of nightshade foods (potato, tomato, bell & spicy peppers along
with their related spices), eggplant) confirmed that the nightshades were
responsible for the increased joint pain. Before the
NF trial, during the trial & also the challenges, I scored every
sore joint in my body on a 0-5 scale for pain, redness & swelling.
Thus I had a baseline of "grand totals" for each segment.
Nightshades roughly double my joint pain scores, which is a combination of
factors incl. severity & number of joints affected.
The nightshade issue is not an allergy, but some "other" type of
sensitivity. I have done both IgE & IgG testing for nightshades (&
gluten also) & do not have antibodies.
In a sort of backward way, the GF diet helped me discover the NF
sensitivity, but first I did go through a very painful period. To this day
I am GF, NF, DF & EF.
Good luck with your research. I do enjoy the Gluten Sensitivity
site. It is often mentioned at our local GIG meetings as a resource to
help explain things to newbies. Best wishes.
Return to top
Research that may
apply to adverse reactions to the GF diet. Reperfusion injury and
Gluteomorphin withdrawal theories.
Hypoperfusion and Ischemia Reperfusion injury theory
1. Hypoperfusion and
ischemia/reperfusion injury:
Note: this this only a
suggestion
hypoperfusion - (hypo
- less than quantity than normal) perfusion (the passage of a fluid
through the vessels of a specific organ)
and/or
ischemia/reperfusion
injury. - (Ischemia - reduced blood flow. Reperfusion
- return of normal blood flow.)
This phenomenon can be
compared to power surges that occur after electricity is reduced or cut
off in a blackout or brownout. We run around and turn off our
computers, microwaves, and sensitive equipment to protect them from
damaging surges when electricity is restored.
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