Crohns and Food
What a difficult and confusing topic.  Crohn's disease is all about the digestive track.  And every professional advises that food does not cause Crohn's disease. With that said, food definitely correlates with everything about the disease.

The longer I live with the disease, the more complicated my relationship is with food. I am going to try to share my perspective on this topic, but please remember that everyone is unique in this disease.  One size does not fit all.  It is about trial and error which is frustrating but worth the effort.
 As I think about how to share my experiences (in hope of helping another) I suggest that you have to think about your food strategy in phases.  Phases in this disease include: "the Flare", deficiencies during a "Flare", Healing Phase, Remission phase, and then sadly, start all over again.

 The Flare
My strategy is to identify foods that are kind to my gut.  When I had my whole digestive track in place it was all about the avoidance of the pain of diarrhea while trying to maintain hydration and still try to maintain my weight.  Not easy!   The following website lists the top thirteen foods for Crohn's patients.  http://www.health.com/health/gallery/0,,20559874,00.html

Oatmeal and chicken soup with an electrolyte water have been my mainstay during flares.  But that's just me.  The key is to find out what works for you.

Deficiencies during a flare.
I have a wonderful internist who is very good about doing blood work to see what deficiencies I need to supplement.  A detailed site on diet and nutrition can be found at http://www.ccfa.org/resources/diet-and-nutrition.html

Identifying the deficiencies includes knowing what part of your gut is diseased and the nutritional
function that is lost when that area is not working properly.  Balancing deficiencies is critical to
preventing future problems, complications or even secondary disease.  (Because of medication side effects, I was diagnosed with Diabetes three years ago).

Top Ten Deficiencies
The following is a list of top ten vitamin or mineral deficiencies associated with Crohns. http://www.health.com/health/gallery/0,,20562810,00.html. What can be confusing is that different doctors and different professional websites can list different deficiencies.  My recommendation, find a good internist (along with your Gastro) who can be a detective for you.  Please do this with a doctors assistance. It's to dangerous to guess at this.

Here is an excerpt that shows researched common deficiencies related to Crohns.

The diets of most patients who have IBD are deficient in one or more vitamins or minerals. Vitamin D and vitamin K deficiencies are frequently found in those with Crohn’s disease, as 

well as deficiencies in iron, vitamin B6, carotene, vitamin B12, and albumin (protein). Patients with Crohn’s disease are usually under increased oxidative stress and have lower 
levels of antioxidant vitamins. Supplementation with vitamins C and E reduces oxidative stress. 

From the website. http://www.lef.org/PDFMaker/MakePDF.aspx?a=1&pdf=1&fn=LE-PAGEID-
113899&url=http://www.lef.org/Health-Wellness/LECMS/PrintVersionMagic.aspx?CmsID=113899

On my next post I will discuss other options being used including the GAPS diet.

My most important advice to you is be assertive on researching your illness and expecting the help and care you deserve.
 This is challenging and if you are too sick get someone like a family member to help you.  Sadly doctors don't know everything and it takes a "village" to support us.
Ask yourself:
What support do I need to put in place?
Does my doctor seem unwilling to help?  Find someone new or add on another professional in the area that is neede.  (Such as pain management, nutrition, stress relief, identifying nutritional deficiencies, mental health therapist, etc.).

Best wishes on your journey to wellness

Have you looked for different ways to try and cope with a chronic disease?
I thought I had tried it all!
Yoga, therapy, nutrition counseling, ...therapy, trying to find someone who would listen, trying to find someone who cared, more therapy, meditation, lots of self help books, blogs, websites, medical research papers, massage therapy, reikei, ....therapy, herbs, diets, more therapy and so forth.

I had gotten to the point where I believed that there really wasn't anything out there that could really help me cope let alone maintain wellness.

But, as I said in a previous post, my mother encouraged me to "hang in there, until something else comes along"
Well, I hung in there and last month I stumbled on a program called EFT, Emotional Freedom Technique or "tapping" for short.

What is it?

EFT Tapping is a Combination of Ancient Chinese Acupressure and Modern Psychology, to Improve Your Health, Wealth, Relationships, Level of Happiness, and Much More… 

EFT Tapping, a Combination of Ancient Chinese Acupressure and Modern Psychology, to Improve Your Health, Wealth, Relationships, Level of Happiness, and Much More… - See more at: http://www.thetappingsolution.com/#sthash.lJAjFNUY.dpuf

The website http://www.thetappingsolution.com/ is where they held a ten day "Summit" with a long list of well know self help "celebrities" like Norman Shealy, Dr. Wayne Dyer, Jack Canfield,  as speakers on this topic.

The Summit is over but the "knowledge" is still available.  This website can connect you to most everything about tapping including:

• What is tapping?
• Why does it work?
• How to tap
• Science/Research
• What the experts are saying
• Resources
• How to get started

I had an amazing ten days of filling my head with knowledge, being empowered to learn how to control or relieve pain, deal with the continuous emotions of dealing with an emotion, etc.
I have learned a new technique that is helping me cope.

Helpful hint:  There are lots of free videos that teach you how to use this technique for yourself.   (see my resource page for websites on EFT)
Videos on using EFT and every topic of physical and emotional issues:
 Getting Started:http://eft.mercola.com/
 "Coping with Anger" http://www.youtube.com/watch?v=VuEIqI82mwA&feature=youtu.be

Ebook - free
     Transform Your Emotions with Energy Tapping (EFT) http://www.thrivingnow.com/tapping/

I have to tell you, returning to this blog is hard.  It stirs up such emotion, fears and anxiety.  Emotion in recalling the past, fears of what I may face in the future and anxiety in trying to control the uncontrollable.

So with that said, what do you do with all that "stuff" in your head.

I have tried every thing I could to deal with the stress and fears of living with Crohn's disease.

• Denial - only lasts so long when you gut hurts
• Anger - keeps coming back no matter how I work on it
• Stifling - probably what makes my gut hurt more
• Isolation - the pity party that says "nobody understands"
• Negotiating - trying to find someone who cares and can give me hope.  "God please let me get well and I will ________(fill in the blank) or I will do yoga three times a week, not take out my frustration on my loved ones if only _______ (fill in the blank)
• Acceptance - well it's really more like resignation that this is my reality after dealing with it for 25+ years.  And I am still here!
• Hoping for Hope - searching for a new medication, trial, doctor, break through, anything
• Hope - being well enough to think and function again

 And the cycle starts over and over again.



Sound familiar?

So, I am now starting a phase of Hope - Yeah for me.  The brain fog is lifting; my anemia/blood work is back to normal; my muscle fatigue doesn't show up until 15-30 minutes after doing housework; and lots and lots of rest.

Okay, okay, so I am a work in progress.....

Next post - I am hopeful about an acupressure technique called EFT, Emotional Freedom Therapy.
Sounds good doesn't it!

Well, I thought I had abandoned this blog.  When a person is in survival mode it's hard to imagine interacting with the outside world.  I defaulted to my disease and the stresses of life and went into "reserve" mode.  That's just part of the journey of a chronic illness.  I have borrowed a phrase from a friend and call it "cocooning".  She used the phrase to identify a period when she needed to withdraw, refresh and transform.  With a chronic disease like Crohn's it's more dire than that.  It's a time to hunker down and try to preserve yourself.   I am sure you all have had to go there.

For the remainder of 2011, it was a battle to fight the disease, the side effects of trying to find a medication that I would respond to and the long recovery back to functioning health.
On top of that came a job change for my husband, a move across the state and many other life stressors to numerous to mention.  A new life can be exciting, but it is stressful no matter what you do to ease the transition.  (And over and over again, we "crohnies" see on IBD medical websites that we need to work on reducing stress.  Ha!!). So I have been in a looonnngg phase of cocooning. I sure hoped the butterfly would appear and was worth it!!

After the move, I sought a new gastroenterologist.  You would think that would be easy.  But nooooo.  I thought all gastro's treated Crohns.  But after going through a young doctor (who didn't know how to run his practice well), having a bad flare with no medical help,  to totally being rejected by another doctor, I have finally found the right one.  It only took a year and a half and another major flare up.  Aaarrrgghhh!!  (The doctor who rejected me just wanted to throw cortisoids at my problem, wouldn't listen to my 25 years of experience, and he finally said, I can't treat you if you won't follow my advice, i.e. take the drugs and shut up.  He finally said in anger, "well, if you had hepatitis C, I am an expert in that".  (He really said that, I kid you not!).   I left that office with little hope.  I won't even go into the battles of dealing with health insurance on top of all that.

So what's the "pearl" here?  Well, I am more of a realist these days so glad when I even find a pretty piece of polished beach glass.  So here is the beach glass: you can try and surround yourself with support, good people, friends and family but in the end, we are alone with this disease.  Or at least we feel that way.  But no matter how long it takes, please don't give up hope on hope.  Yes, keep believing that "hope is on it's way".  My mother, who was a wonderful person and nurse, said: "Hang in there.  The next medication or treatment or break through is coming".  And she was right.

Now that I am on the mend again, I want to reach out and share, commiserate and encourage my fellow "crohnies" and other IBD sufferers.
I have finally found a doctor who "gets" me.  There's no rolling of the eyes, nor cutting me off in mid sentence, and he actually listens to me.  He has gotten me back on track with recovering from a huge flare up (July through January) and I have hope again.
Hope that I might get stable enough to enjoy life a little.
Hope that I am actually starting to come out of my "brain fog" and can retrieve the knowledge and brain power that I thought was lost to the disease.
Hope that as winter passes and spring is starting to "peek around the corner, that I might have another chance at blossoming too!

In a better place?  Well it's been over a year since I last posted.  After a lot of changes, I am, now in a better place (in so many ways).  I have changed my diet to all natural foods and do not eat processed foods.
As I research information about the food industry, I become more disillusioned that there is very little intent for healthy food  production from the major brands.  For the most part it's all about making profit by putting cheaper yet harmful additives in the food.  Many of them are even addictive.

In my last post I said knowledge is power.  I know everything we read says that food does not cause IBD or in my case Crohn's.  But I am in disagreement.  Well, maybe I would use a different phrase.  There are foods my digestive track and immune system does not like and can put me back into a "flare-up"  So maybe foods don't cause Crohn's directly  (I am still researching!) but they sure do exacerbate it!!

So we are now enjoying wholesome farm fresh eggs, home made baked goods and the basic meats and vegetable dishes like my grandmother use to make on the farm.   Did you know farm fresh eggs  taste better?  I am in a healthy state (as much as I can be) and I am pursuing my art again.  Health and wellness are so important.  I wish you well.

Tools for a MSG, glutamate free future

I am excited. Today in my research I found a website that tells me just how much glutamate is in an ingredient. Finally no more guessing ( Well almost. There are caveats)  My apologies to those who don't like this much detail, but with this disease, knowledge is power. 

The Nutrition Data website by "Self" magazine gives nutritional details on thousands of ingredients and products including their glutamic acid content. For example: when I looked up soy sauce, I found that there were different levels/amounts of glutamic acid and aspartic acid in four different types of soy sauce.
Go to http://nutritiondata.self.com/foods-Soy%20sauce000000000000000000000.html , then click on soy sauce made from soy ( tamari) and then scroll to nutrition information and then look at protein & amino acids chart and click on "more details".
This will give you a break down on the types and amount of protein found in this ingredient. Look at both glutamic acid and aspartic acid for proteins that have an "msg" affect. (Aspartic acid is related to the controversial product called aspartame found in many diet soda drinks.)

So, soy sauce with soy (tamari) has 159 mg of aspartic acid and 434 mg of glutamic acid per tablespoon.

Here is the caveat: Compare that to another soy sauce in the list such as soy sauce with hydrolyzed vegetable protein. If you are familiar with MSG name alternatives then you know that anything hydrolyzed will have glutamate content. But when you look up the break down of proteins for this ingredient there are no details. This doesn't mean that it doesn't have glutamic acid, it just means that they haven't listed this break out.

The other issue to keep in mind is that the listing glutamic acid does not differentiate from natural occurring glutamic acid and processed or "free glutamic acid" that has been manufactured through either fermentation, use of enzymes, acids, heating or drying processes that release the glutamic acid from the original protein. Whether you only react to the free glutamic acid or both free and natural glutamic acid is probably determined by your level of sensitivity.

So it's a helpful tool if you keep these limitations in mind.

Another tool that I found today that is helpful (but also has a caveat) is foodfacts.com You can look up a lot of products and find the labels with ingredients listed and allergen listings as well as what they call controversial ingredients such as MSG. This is a good site to learn about hidden glutamate ingredients. For example: look up one of the common commercial brands of peanut butter. (I love peanut butter. Favorite foods or foods you crave are a good place to start your searches. They may very well contain the stuff you are sensitive to)

The two top commercial peanut butters both have allergen listing that have different types of allergens or controversial ingredients that you can highlight by pressing on the little square button with a picture of the allergen or controversial ingredient.
When you click on the MSG button, the words "vegetable(s) oil fully hydrogenated" shows up in color. This means that this ingredient has an amount of free processed glutamic acid or MSG. (If you want to know the level of glutamic acid it contains you can look it up on the other website previously mentioned.)

The other top commercial brand has both soy protein and vegetable hydrogenated oil.

So these tools can help you get closer to identifying the foods you may be reacting to or to find MSG alternative names. Just remember that it isn't conclusive.

Knowledge is Power!

Climbing the mountain

Well, discouragement and set backs can come with the journey when climbing a mountain. That's what it feels like today after a day of challenges.

Chalk it up to a learning experience.
1) Anything with the word enriched is suspicious. In baking yesterday I found the flour I have always used contains malted barley. So watch out for your baking ingredients.

2) Walking into an organic, health food store does not assure you that the food is MSG free. I got so discouraged seeing all the "health" food containing hidden MSG. When I say hidden I mean it's labeled under another name besides MSG.

2a). The discouragement of how expensive it is to try to change to an MSG free lifestyle ( higher prices) and nearly replace everything in your pantry. (initial investment)

3) Trying to replace your favorite food products from scratch isn't easy. I found out that English Muffins are tough to make. (especially when you feel crummy. I don't know if I am going through withdrawal or what, but my blood sugar was very low yesterday and I was battling that among other things)

4). With discouragement comes the nasty feeling of " oh what the hell" especially when you are bombarded with holiday food messages, parties and people eating the food you cant have. Temptation creeps in when one is discouraged.

5). Finding out more and more information of what this chemical does to the body and how it has destroyed so much of mine is overwhelming to say the least. Wikipedia site on glutamic acid explains the issue very well albeit more scientific language http://en.wikipedia.org/wiki/Glutamic_acid

I found more info to add to my list of what to avoid including medications and vitamins, etc. in gelcaps containing MSG. (The gelatin contains free glutamic acid via processing)

Fresh produce can been sprayed with Auxigro, a plant growth enhancer that contains hydrolyzed protein(s) and MSG (some of these crops may be used in baby foods?). How do we know what is safe?

6). That the food industry is working ever harder to follow this path of adding chemicals and unhealthy processing to our foods to make a sale. Yesterday I found a health food industry white paper from the corn refiners association, touting that high fructose corn syrup ( HFCS) is no worse than sugar. (Have you seen the recent commercials ? This is the ingredient that started my illness back in the 1970's!!). http://cornnaturally.com/the-business-case/white-paper/
What they fail to mention in their marketing strategy report is the part where processing HFCS creates free glutamic acid (MSG) in the product.

So, what does one do?

1) Lick your wounds and give yourself credit for how hard this is! One can't avoid emotions, you have to work through them

2). Find others that understand. This may not be easy to do on a person to person basis, but there are a lot of bloggers out there talking about this problem and knowing you are not alone helps!

3)Baby steps and be kind to yourself. I ended up taking on too much yesterday especially when I wasn't feeling well.

4). Regroup and try again. I rested up today to recover and will be ready to tackle it again tomorrow I haven't been battling this for 30 years for nothing so why stop now when I know so much more. Knowledge is power.

Wishing you good health