Prevention is the best treatment

Crohn's Disease Forum

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What is Crohn's disease?
Crohn's disease in an inflammatory bowel disease.
Why to we have Crohn's disease?
They say the cause is unknown, but believe that it's the combination of
an overactive immune system, hereditary problems and environmental
factors (bacteria/viruses).
Is this true? NO !
Crohn's disease is a hypersensitivity reaction to the chemicals in our food.

Family members may share similar chemical sensitivities. Crohn's patients
are usually people who have a weak immune system, not an overactive one.
It is not caused by bacteria/viruses. It would just run its course if it was.
Bacteria from your gut may however fester in the wounds created by the
inflammation. Bad bacteria thrive in the environment created by inflammation and readily crowd out the good bacteria. If the cause is truly
unknown then why do scientists have no difficulty in inducing the disease
in lab mice, rats, etc with emulsifiers (same emulsifiers found in our food) in order to study Crohn's disease medications.

Why would they keep the truth from us?
There is a lot of money to be made. Studies are expensive and usually
sponsored by drug companies. They want a medication that they can market
and there is no money in telling someone to change there diet.

The chemicals in our food are dangerous and affect everyone. How it affects
people varies because everybody is different. It could cause IBD, chronic
constipation, stomach upset, cancer, any number of autoimmune diseases
like psoriasis. It's probably what is behind autism and alzheimer's disease.
Remember, it wasn't that long ago that everyone thought smoking was safe.
It is now generally understood that inhaling chemicals is bad for you. So
what about ingesting them?

Medications today are widespread with new ones coming out on a regular
basis. They pretty much all center around suppressing your immune system.
They also have plenty of side effects to go around. The idea here is that
you will not react to the chemicals as much. You will, however, still react.
Flares may be less often or less severe, but inflammation still exists.
Instead of trying to lessen the severity of the rash with medication, how
about we stop rolling around in the poison ivy. Prevention is the best
treatment.

Diet change.
Food is good. Humans have been eating food for a long time. It's not the
problem.

Chemicals in food:
Emulsifiers (polysorbate 80, soy lecithin, carregeenan)-avoid like the plague.

Preservatives (ie. sodium nitrate, sodium benzoate etc.)

Pesticides/Herbicides (produce should always be organic)
- accumulate in our bodies over time, affecting many systems
- can't be washed off produce
- peeling doesn't remove the chemicals either. (even found inside
watermelon)
GMO products - avoid

Chlorinated water - should filter out the chlorine which may kill the
fragile good bacteria.

Read all food labels carefully. Avoid the chemicals. If you don't know
what an ingredient is then you probably shouldn't be eating it.
Organic products may still contain carrageenan or soy lecithin.
Gluten free foods are often well tolerated because they are minimally
processed not because gluten is an issue. Still many gluten free foods
are processed with additives that should be avoided.

My wife and I are hospital pharmacists. We've done a lot of research
and feel strongly about our beliefs.

It was very traumatic for us to witness our daughter suffer so much and
then be diagnosed with Crohn's disease at the age of 5. She had extensive
ulcerations from her stomach all the way down to her anus. She was so
inflamed that the scope couldn't even get to some of her small intestine.
The pediatric GI specialist showed no emotion in telling us this except for
the little smile when he said this was his 3rd diagnosis of Crohn's this week.
He wanted to be aggressive with her treatment, because she was so severe,
with the top down approach. We were in shock. My wife, who was
undiagnosed Crohn's disease at the time, asked if diet change would help
since she had been avoiding some things that seemed to help her.
This doctor got upset. He insisted that we not change her diet, only giving
us the reason that it would be too boring. She had a course of antibiotics
and Pentasa, but we refused all other treatment. We all did the diet
change as our research suggested. She improved. She had a setback about
two months later when her teacher gave her an ice cream pop at the end
of the school day. She came home complaining of stomach pain, threw up,
and had bloody diarrhea for several days. After that, we took full control
of her diet and made sure the school wouldn't feed her anything ever again.
We follow this diet strictly and I'm thrilled to say my daughter has had
no flares and no symptoms for 3 years now. Her blood tests don't even
show any inflammation. She's growing like a weed, more than a foot just
this past year. My wife is becoming very good at making things from
scratch like candy for holidays, cake for birthdays, and breads. We now
are also big into gardening.

Denial:
I couldn't believe that these food additives could do this. I mean, the
FDA protects us from things that would hurt people right.

Anger:
I was very familiar with the tight regulation the FDA has over new medications. That they had to have extensive trials to prove that they
were safe and all possible side effects were documented. I assumed they
did the same for food additives and was very angry to learn that this was
not the case. As far as food additives go, they are allowed by the FDA until
they are proven to be harmful. Studies to prove that an additive was
harmful would be very expensive and no one's going to do that when there's
not going to be a profit for doing so. I was angry to learn that many of
the additives used in america have been banned in other countries.
I was angry at myself for not figuring this out sooner and for providing the
food that made my daughter sick. At the time, my daughter was big into
have hot cocoa with toast. She was having 3 to 4 packets per day. We blame the hot cocoa mix for initially causing her Crohn's since it is loaded
with carrageenan.

My daughter is happy and full of energy. She is now 9 y/o. and has had
perfect attendance at school the last 2 years. The pediatric GI doctor says
each year how amazed he is at how well she is doing without any medication
other than Pentasa and that he's never seen anything like it.

Thank you for allowing me to tell our story.
 
I'm so happy that diet has worked for you. It doesn't work for everyone though. There are a number of kids on this forum that have been through the diets, all of them, Paleo, SCD, clean eating FODMAPS. No GMO, dairy, chemical, carrageenan, gluten and the list goes on and on yet they still flare. So, unfortunately, diet isn't the answer for everyone nor is chemical hypersensitivity the cause for everyone's CD.

I hope your child has continued success with diet. It's great that she has done so well.
 
Second that
Diet does not work for everyone
Believe me we tried it all
Crohns exclusive diet /fodmaps /all organic no additive /only whole foods
Currently Ds needs diet AND meds
Is she being monitored by scopes /imaging
I only say this because some kids show nothing in bloodwork - Ds is one of those and still can be flaring.

Glad you found something that works but realize this is a very individual disease so what works for one may not work for many .
 
Diet change is the answer because it's what we're eating that's causing it.
You can list a bunch of diet types an say they fail and I understand that they
would fail because there isn't a certain one diet plan that will work. They all
have their flaws. It would be more like a combination of them that would work.
You have to read all labels and educate yourself about everything being consumed.
You need full compliance with no exceptions. It's not easy at times to find these
foods or to stick to it. You really have to work at it. We had to throw out just about
everything that was in our kitchen and pantry. We had to special order some things.
There is no eating out anymore. If it's not working for you then there is still a source
of contamination it your diet. We recently discovered that they changed the bread
we've been buying from a bakery the last 3 years. They now get the doe balls from
their central supplier which contain soy lecithin, soy flour and 2 different preservatives.
My wife was sick with diarrhea for most of the week from 2 slices of this bread.
It's very difficult for us to find bread that doesn't have emulsifiers or preservatives.
We now make our own.

I usually get resistance when I try to educate people. They will change some things
in their diet, but will not fully commit to the change.

Denial and anger are the first stages of grief. I was there.
You can deny that diet isn't the cause in your particular case.
You can deny that certain additives aren't really the problem.
You can be angry about giving up certain foods.
You can be angry about about not going out to eat.
You can be angry at me for everything I'm saying.

The truth, however, is the truth.

You have to be your own advocate. You can't fully trust most doctors. Most
don't really care if you get better as long as the money keeps flowing.
example: Did you know that your colon is a microbial competition for space.
There are good bacteria, bad bacteria, as well as fungal varieties. If you've
had antibiotics and also have a suppressed immune system, fungal colonization
takes over. This can be just as damaging as bad bacteria. GI doctors will rarely
ever treat for this. Treatment consists of taking an antifungal like fluconazole
for 4 to 6 weeks. We did this for our daughter. Autopsies of Crohn's disease
patients usually show widespread fungal infections in the colon.
It's fungal overgrowth that is behind the dietary recommendations for sugar and carb
restrictions. This isn't very effective and should be treated with antifungals.
If your immune system is suppressed, you should be treated repeatedly for as
long as your immune system is compromised. We chose to strengthen our immune
systems with vitamin d and avoiding brominated flour.

I work at the same hospital that sees GI patients. I rarely ever see antifungals used.
I've seen colonoscopies gone bad. Perforated bowels lead to sepsis and an extensive
ICU stays. No procedure is completely safe. I've seen many Crohn's admissions.
More and more all the time. I recently was called to a CPR for a woman with no
previous medical history other than Crohn's. She had a flare which became septic
causing emboli which caused PE and MI taking her life. I see many children having
surgeries. These are things that motivate me to try to help others.
Please keep trying.
 
Second that
Diet does not work for everyone
Believe me we tried it all
Crohns exclusive diet /fodmaps /all organic no additive /only whole foods
Currently Ds needs diet AND meds
Is she being monitored by scopes /imaging
I only say this because some kids show nothing in bloodwork - Ds is one of those and still can be flaring.

Glad you found something that works but realize this is a very individual disease so what works for one may not work for many .
I have a nutritionist who says you can do all the right things and still have issues with the disease.
 
Diet does not work for all
You are making assumptions about how others treat diets without really knowing them

My son has life threatening food allergies and has had anaphylaxis so I am well aware of how to read labels and call companies - there are no "cheats" when food can kill you .

We placed him on elemental formula only and trialed one whole food time no additives preservatives all organic etc. not just a specfic diet - those were just examples
As I said I am very glad your dd has had success
Sharing your beliefs is fine and others may try it
I know we have
But that doesn't mean your particular diet will work for every single adult and child and no meds will ever be needed .
Add in your dd would have very early onset Ibd since she was dx at age 5.
http://www.ncbi.nlm.nih.gov/m/pubmed/25058236/

http://www.naspghan.org/files/documents/pdfs/annual-meeting/2012/Muise - FINAL - NASPGHAN 2012.pdf


There are numerous studies on it explain how convential meds for regular Ibd are less likely to work .

It is a completely different entity than those dx after age 5 and still different phenotype from those dx as teenagers /young adults .
When was your dd last scope and imaging since disease can be silent and asymptomatic as well?


This is a place to be supportive of all types of treatment diet /lifestyle and medicine .
 
I appreciate the feedback.
Denial and anger are normal reactions.
Please don't be so quick to say you've tried everything.
Have you been treated for fungal overgrowth?
If you're using an immune suppressant, it could be what is needed.
I can't think of a diet that could possibly work if you have fungal overgrowth.
Food allergies are something different. This is real and must be taken very seriously.
True food allergies aren't as common as society would have you believe.
True gluten allergies do exit, but are rare. People may benefit from eating gluten free
foods because many of these foods are minimally processed. True peanut allergies
are very real, but seems widespread now. There seems to be multiple kids in each
of my kids classes that have this. I love peanuts. I've been eating them my whole
life with no problem until about 8 years ago. I started have very severe cramping and
diarrhea after eating peanuts. I didn't believe it at first, but it kept happening. I
started thinking that I must have developed a peanut allergy. However, I could eat
Jif all natural peanut butter without problem. I contacted Jif an they explained that
normally peanuts are rotated with other crops, but they have contracted farmers
who only grow peanuts and nothing else. So, normal peanuts are exposed to pesticides
and herbicides from the times of other crop use. I started eating organic peanuts
and had no problems.
Formulas are gut rippers. You've tried organic ones without preservatives. That's
better than most, but they still have emulsifiers.
As far as the thought of the diet change only working for little kids, my wife is 43 y/o
and only takes mesalamine. She has no symptoms.

Please do not give up. I understand the resistance, the denial and the anger. I was
there.
I hope I can help some out there. We wish someone would have told us when my
wife first had symptoms some 25 years ago.
I'm a pharmacist that is saying that medication is not the answer.
thank you.
 
We are doing everything we possibly can to avoid having our daughter ever scoped
again. No procedure is entirely safe and if there no symptoms then we will continue
to refuse to allow this.
 
OK that ends this conversation then..
The members of this forum are not 'in denial or angry', you just simply have 0 evidence to back up your claims right now.
Unfortunately blood work and symptoms are not reliable indicators for what is going on with the disease inside.
The disease could be doing silent damage that only a scope can pick up (I have had CT scans normal, no symptoms, fecal calproctectin normal, blood work normal... BUT ulcers on scope). Silent damage often leads to surgery.
I am proof of that as are many members who have already posted in this post.
 
You can't have that kind of damage without symptoms unless your immune system
has been suppressed. CRP values are actually a very reliable indicator of inflammation.
It's just not specific for the source of the inflammation. When you take medication
there are usually side effects that have to be dealt with. Have a strong immune system
is very important. I see it often with our cancer patients who lack the ability to
mount a response to an infection. It can't be detected with lab values, only with the
presents of a fever, a very dangerous situation.
 
Diet does not work for all
You are making assumptions about how others treat diets without really knowing them

My son has life threatening food allergies and has had anaphylaxis so I am well aware of how to read labels and call companies - there are no "cheats" when food can kill you .

We placed him on elemental formula only and trialed one whole food time no additives preservatives all organic etc. not just a specfic diet - those were just examples
As I said I am very glad your dd has had success
Sharing your beliefs is fine and others may try it
I know we have
But that doesn't mean your particular diet will work for every single adult and child and no meds will ever be needed .
Add in your dd would have very early onset Ibd since she was dx at age 5.
http://www.ncbi.nlm.nih.gov/m/pubmed/25058236/

http://www.naspghan.org/files/documents/pdfs/annual-meeting/2012/Muise - FINAL - NASPGHAN 2012.pdf


There are numerous studies on it explain how convential meds for regular Ibd are less likely to work .

It is a completely different entity than those dx after age 5 and still different phenotype from those dx as teenagers /young adults .
When was your dd last scope and imaging since disease can be silent and asymptomatic as well?


This is a place to be supportive of all types of treatment diet /lifestyle and medicine .

Amen
 
By your standards then my son is in remission too! Woohoo! No symptoms, great lab work all is apparently well! Oh wait except that he has inflammation from his terminal ileum throughout his colon and anus.

CRP actually isn't a great marker for inflammation involved with CD for a number of people. It's why fecal calprotectin stool tests are used in conjunction with blood work for some (and even its not 100% reliable). There are a number of members here that walk around with normal CRP while inflammation is present.

What you are talking about is clinical remission, the absence of symptoms and the normalization of blood work. It is no longer the treatment standard for Crohn's especially in pediatric patients who have so much to lose if a deep stable remission is not achieved.

Deep, stable remission has been proven to provide longer periods of remission and less risk of permanent damage that can lead to surgery. It includes clinical remission (absence of symptoms normalization of lab work), endoscopic remission(visually clean scopes, i.e. no inflammation visualized) and histological remission (no inflammation present at the cellular level) with full mucosal healing. (<--Super important piece of the puzzle)

It's great that your child is experiencing no symptoms and good blood work. Unfortunately, that isn't proof that her CD isn't active.

There's no denial here. You didn't enter a forum where diet isn't used or incorporated into treatment plans. It often is and there is even a sub forum about diet. What has worked for you and your child to reach "clinical remission"(which doesn't in fact rule out simmering inflammation quietly doing permanent damage) isn't new to this forum or a number of these members.

It's fine to say "this worked for my child"(hopefully with credible proof) but it is not okay to come on a support forum and claim everyone is in denial or angry.

I wish you continued success with your treatment plan.
 
Last edited:
Hopefully the child will manage to survive long enough to reach adulthood and then will be able make her own treatment decisions, at the very least she may be able to get a scope to find out what permanent damage has (or hasn't been done).
Currently you are risking her life by not knowing.
 
Also when I had normal blood work, normal stool sample and normal CT scan BUT ulcers on my scope, I was not immune suppressed. I had never taken a Crohn's medication in my life at that point. I was very healthy and never got sick, my immune system was strong and I had never taken any immune suppressant medication. I don't know why you have to be in denial about this - Crohn's can do silent and permanent damage that doesn't show up in blood work or through symptoms.
 
Now that we've all established that I'm presumptuous jerk and a bad parent,
I was wondering if perhaps I made any points that could benefit your situation.

I didn't receive any feedback about my comment regarding fungal overgrowth
in people taking medication to suppress their immune system. It's been my
experience that this is seldom treated. I don't believe many people are aware
of this issue. Perhaps this could be something helpful that comes from our
discussion.
 
This thread has been locked because it's not supportive.
 
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