New Blog

Due to the fact that I have multiple AI conditions, and the idea I have behind my blog is to help all those with AI concerns, I have created a new blog that I will strive to keep updated with not only PBC, but all AI information I get.  I also plan to add a recipes section, as many often ask for various ideas.


Please take a look at the new Wellness in Autoimmunity: Trying to Create Health by Improving Nutrition Goals -  WATCHING blog.  Start watching what you put in your body, so that you may gain better health.  I hope it's helpful!!

New year, Renewed Commitment

I haven't updated in awhile.  I only see the liver doctor once a year now, but that might be changing.  I'll find out Tuesday.  I only get my blood work done every 3 months, though I only did it twice last year.  It was a super busy year, and I just didn't do as well as I'd hoped.

I've still remained 100% grain free of course, but some of my other good habits of working out and morning green drinks got inconsistent.  I've also been eating more sugar and legumes that I did before.  All these things combined, and my numbers are up, my symptoms are worse, and I have new symptoms now of joint pain, extremely dry mouth and eyes.  Not good.  So back to research I went.  I knew I had to step up my game in order to fight this.

So, I've decided to go to the complete AutoImmune Protocol (AIP).  It's pretty strict, but I'm not ok with dying sooner than I have to, I have a family that I'd like to see grow up/old.  I am engaged to be married soon and he and I have decided to do this together.  He already ate a fairly strict diet, much like I do, so the change isn't exceptionally hard on him (except not having spicy food), but I will say he is an exceptional man for doing it.  In fact, our whole house is AIP complaint for all meals.  We have 3 girls aged 6,8 and 9 and they will not be getting separate meals.
Grains are out completely, but we do allow them some nuts, seeds, chocolate and dairy in limited quantities for their school lunches and for treats.

Today completes the first week of the AIP for us.

The first couple of days without any coffee, sugar or chocolate were actually much worse than I would have thought they would have been.  Usually the worst addiction is wheat.  Many people don’t know this, but wheat can cross the blood brain barrier like opiates (heroine, morphine, oxycodone).  This is part of why it is so addictive.  And it can cause actual, physically painful withdrawal symptoms when taken out of your diet.  But I did that 3 years ago, and it honestly wasn’t that bad for me.  I also have a pancreas problem, Not AI, that caused me to have to eat very low carb for a long time.  So I haven’t eaten many wheat products for 16 years now (minus a short stent of thinking fresh, homemade whole wheat bread made the difference from the highly processed kind a few years ago, which it does not).

Those first few days I felt so tired, had headaches and generally felt like I’d been hit by a truck.  I hadn’t expected much of anything because I didn’t think this was such a HUGE change from our normal eating, so this was a bit tough for me to accept.  After about the 3rd day I started feeling better.  I actually made it to the gym this week too, which is pretty amazing.  Today I’m feeling pretty good as far as the diet change goes.  My hip and knees still hurt, but it is slightly less than it was.

I don’t expect miracles in just 1 week.

Generally the diet is fine.  Not having any chocolate or coffee is really the worst of it for me, but choosing life over coffee is an easy choice.  Our daughters haven’t really even noticed much of a change, I think, except that we've all talked about it.  We never had bread or any grains at a meal anyway.  Just now there’s also no dairy or legumes as well.  Those are 2 things we probably used fairly commonly.  Today was the first weekend morning breakfast to make.  We can’t have eggs, so instead we made homemade turkey sausage and sweet potato hash.  Turned out pretty good, but I think the girls would have preferred my grain free waffles or an omelet…Maybe in a few months.

Besides hopefully fixing, or at least preventing further damage of my liver, this diet has had some really cool side effects too.  My fiancé and I actually get to cook together now, not him cook and I bake.  We’re doing it together.  And it makes us feel closer.  This ‘thing’ we’re doing together, for us.  I REALLY like that.



So it’s been a week.  I’m feeling better from the initial drag, but we probably have many more weeks to go before other things improve, but I’m in it to win it - WE’RE in it to win it! :)

For all the people I know with AI, and for those I haven’t met yet- I plan to continue to update the progress of things.  There needs to be a better solution to AI diseases.  Taking a pill to (marginally) manage symptoms, and even cause worse side effects is just no way to live.  We exist, having moments of less pain where we can enjoy life, but that’s not enough. I actually want to FEEL better, to GET better.  With the AIP and other lifestyle changes, I hope to accomplish that.

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For those that don’t know what the AIP is, the short list.

Don’t eat:
* Grains
* Pseudo grains
* Legumes
* Nuts
* Seeds
* Sugars (including honey, maple syrup and artificial sweeteners)
* Dairy
* Night shades (here's a good list http://www.thepaleomom.com/2013/08/what-are-nightshades.html)
* Eggs

Do enjoy:
* Meat
* Seafood
* Sea vegetables
* Green leafy vegetables
* Cruciferous vegetables
* Fruit
* Gourds (squash, pumpkin, etc)
* Sweet potatoes
* Alliums (onions, garlic, shallots, etc)
* Spices as long as it doesn’t fall into a category above
* Coconut

We also have a green, blended drink ever morning with:
* Frozen fruit
* spinach
* kale
* carrots
* cucumber
* lime
* aloe cut from a plant
* aloe juice
* coconut water
* parsley
* avocado
* ACV
* Milk Thistle Extract

With the right fruit, the smoothie is delicious.


And for those interested, besides my liver meds, these are the supplements I take (some are for AI in general, some are due to my liver disease specifically):

Fat soluble vitamins / and because my liver doesn’t process them: A, C, D, E, K and Calcium/Magnesium
Gut healing: Probiotics, Digestive enzymes, L-Glutamine, NAC, Betaine HCL +Pepsin, slippery elm
For SIBO / Yeast overgrowth in the gut: Anti-microbial, Caprylic Acid
L-lysine
Krill Oil
Biotin (my liver meds make my hair fall out)


Some Good Resources:
http://www.AmyMyersMD.com
http://www.GlutenFreeSociety.org
http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol
Wheat Belly Book by William Davis, MD

Leaky Gut

 What is the Leaky Gut Syndrome (LGS)?

Leaky gut syndrome is a term often used in complementary or alternative medicine circles and by the lay public that describes a collection of symptoms believed to be due to what medical researchers call increased intestinal permeability or altered intestinal or gut barrier function. This concept is increasingly recognized as one of the most important problems, if not the most important, in the prevention or development of various diseases such as celiac disease, Crohn's disease and various autoimmune disorders. An intact gut barrier is part of the innate immune system defense mechanism that is important for health and prevention of disease. The intestine is lined with a single layer of epithelial cells, called enterocytes in the small bowel and colonocytes in the large bowel or colon. These epithelial cells constitute the intestinal barrier or defensive wall from what enters our body when we eat.

Can gluten cause leaky gut with or without celiac disease?

Chronic gluten exposure has been shown to activate zonulin resulting in increased intestinal permeability (or leaky gut) even in the absence of celiac disease. ...

http://www.thefooddoc.com/leaky_gut

Study Sheds Light On Gluten Sensitivity - WSJ.com

Very interesting article. Like I keep saying- this information is still very new, but it's real!
http://online.wsj.com/article/SB10001424052748704893604576200393522456636.html

Is gliadin really safe for non‐coeliac individuals?

"The data obtained in this pilot study support the hypothesis that gluten elicits its harmful effect, throughout an IL15 innate immune response, on all the individuals. This innate response is found in both patients with and without CD, although the triggering of an adaptive response is CD specific. We propose that somehow patients with CD need to be DQ2 and also have a lower threshold for triggering an adaptive TH1 response. This lower threshold could be mediated by the higher basal levels of immune mediators, like IFNγ mRNA, found in patients with CD, a defect in the CD permeability or even a higher IL15‐sensitive response under the same stimulus, which might be mediated by a higher density of IL15 receptor in patients with CD."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1954879/?tool=pmcentrez

Some videos concerning gluten and our health

So there are tons of things to find that will talk about gluten and how it negatively impacts our health.  I find more stuff all the time.

Here's a different mode.  Instead of giving more articles to read (which I will soon anyway :).  Here are some videos to watch/listen to.  Good info...I'm sure I'll find more soon.  They are all over the place. 


Video 1
Video 2
Video 3

A TED MED Presentation

Surprising how much stuff has gluten

TRUE Gluten Free Diet Guidelines – Avoid All of These…
Wheat
Barley (malt)
Rye
Oats
Sorghum*
Millet*
Teff*
Triticale
Spelt
Durum (semolina)
Einkorn
Emmer
Corn (maize)* (for a list of hidden corn ingredients, go here <<<)
Rice (does not include wild rice varieties but does include brown rice)*
Groat
Graham
Amaranth***
Buckwheat***
Quinoa***
*These grains are classically considered gluten free, but are not recommended on a TRUE gluten free diet.  If you would like to learn more about why these other grains should be avoided, watch the following video <<<
*** These items are technically not grains, but are at high risk for cross contamination and not recommended on a TRUE gluten free diet unless verification can be obtained.  These pseudo cereals are also very high in glutamic acid and should be discouraged as substitutes for patients with neurological symptoms.
Misc. Food Additives or Processed Foods That Can Contain Gluten
MSG
Modified food starch
Textured vegetable protein
Hydrolyzed plant protein
Hydrolyzed vegetable protein
Hydrogenated Starch Hydrolysate
Hydroxypropylated Starch
Pregelatinized starch
Vegetable gum
Vegetable protein
Extenders and binders
Maltodextrin (wheat or corn based)
Dextrin
Maltose
Non Dairy Creamer
Seasonings (check labels)
Natural Flavors
Smoke flavors
Artificial Flavors
Natural Colors
Artificial Colors
Caramel color and flavoring
Soy Sauce
Miso
Bouillon cubes or stock cubes
Candy may be dusted with wheat flour; ask.
Canned soups – Most are not acceptable.
Cheese spreads & other processed cheese foods.
Chocolate – may contain malt flavoring.
Cold cuts, Wieners, Sausages – may have gluten due to cereal fillers.
Dip mixes
Dry sauce mixes
Honey Hams – can be based with wheat starch in coating.
Ice Cream & Frozen Yogurt – check all dairy.  Cows are fed grains and many react to dairy for this reason.  Grass fed dairy recommended (or avoid dairy altogether).
Instant Teas & Coffees – cereal products may be included in the formulation.
Mayonnaise – check thickener and grain based vinegar ingredients
Mustard – Mustard powder may contain gluten
Oil, frying – Check for cross contamination or corn based oils.
Poultry and meats – Check out the flavorings and basting and inquire about meat glue
Sour cream – May contain modified food starch of indeterminate source.
Dry roasted nuts & honey roasted nuts
French fries in restaurants – Same oil may be used for wheat-containing items.
Gravies – check out thickening agent and liquid base.
Vitamin supplements (different brands contain grain based ingredients – check the labels carefully)
Baking powder (commonly contains grain – wheat or corn)
The Grasses -
Many people want to use wheat, barley, rye, and oat grass (not the seed) as a supplement in the diet.  Technically, these do not contain gluten as they are the grass part of the plant.  However; it is recommended that these be avoided to prevent the possibility of cross contamination.
Alcoholic Beverages that contain gluten-
Beer
Malted beverages
Grain based spirits (many claim that distillation removes gluten…Gluten Free Society recommends avoidance regardless)
Non Edible Items That May Contain Gluten (Read Your Labels)-
Stamps & envelopes
Toothpaste
Lipstick
Hairspray & Shampoo
Detergents
Pet Food
Medications & Vitamins
Lotions
Playdough
Makeup
Is There Gluten in Dairy?
Research has identified that gluten from mother’s milk passes into the dairy of humans.  A majority of gluten sensitive individuals do not tolerate milk or dairy based foods.  The staple diet for commercial dairy cows is grain.  Whether or not glutens from feeding cows grain crosses into dairy is still in question and has not been adequately studied.    That being said, common sense of the obvious should supersede the decision to use dairy.  Gluten Free Society recommends only dairy that comes directly from pasture fed cows if any at all.  For more in depth information on this topic, please listen to the following 2 part interview between Dr. Peter Osborne and Dr. Rodney Ford:
Part 1
Part 2
****Note – their is no such thing as a complete comprehensive list of food items that contain gluten.  Manufacturers regularly change their ingredients, mislabel, have product recalls, etc.  This is why Gluten Free Society’s stance is to avoid processed and packaged foods as much as possible as well as to avoid eating out as much as possible.  You cannot control the mistakes or ethical considerations of others.


My source:
http://www.glutenfreesociety.org/gluten-free-society-blog/guidelines-for-avoiding-gluten-unsafe-ingredients-for-gluten-sensitivity/

A start to the gluten auto immune connection

So here is a website with tons of links to studies with information about gluten and auto immune diseases:

http://www.glutenfreesociety.org/gluten-free-society-blog/gluten-and-the-autoimmune-disease-spectrum/


This is a video, it's free to watch- there's stuff on the page to buy info, but it's free to watch the video:

http://www.glutenology.net/glutenology-health-matrix-free-video/

That'll get ya started.  Many more to come!