It is SO MUCH MORE Than NOT Eating Gluten: A Celiac Disease Story

You have likely heard the phrase “Gluten-Free", whether it be at a restaurant, grocery store, party, TV or in a joke.  Most people have no idea what it means other than you can’t eat the good stuff.

There are several reasons why someone might eat gluten free:


1.  They are following the gluten-free fad diet that many celebrities try to push.


2.  They have an allergy to wheat.


3.  They are doing it for health reasons such as leaky gut, autism, digestive issues, etc.


4.  They think it’s healthier.


5.  They have CELIAC DISEASE.


From someone who has Celiac disease I find #1 and #4 frustrating.  Anyone who would give up gluten when they don’t have to is just silly, but I am thankful for all those fad dieters who have paved the way to get more gluten free goodies on the shelves. 


However, they tend to give eating gluten-free a bad name which is why there are so many jokes about it.


I'm often told:


“Oh, are you on that funny fad diet?”


 “You are stupid for not allowing yourself good food.”


... and my all-time favorite ...


“I would just die if I couldn’t eat gluten.”


Let me tell you a secret, I will die if I eat gluten.


I have two kids and a niece who will die if they eat gluten. 


My mother passed away before we figured Celiac out, but in my opinion, she died from eating gluten. 


Because of this, I want to make it clear to all those who make fun of gluten-free eating to stop and become educated instead of poking fun and making our lives miserable.  


It's hard for us, and it's hard for the whole family!  

Those doing the fad diet can cheat if they want, but, those of us with Celiac disease cannot, because if we do, we are sick for days or months!  I personally lose my senses and can’t think.  I have pain so bad I can’t stand up.  My daughter spends days vomiting along with pain and my son is just miserable all over.  After we recover from the harsher symptoms we spend months in a daze, like we have been hit by a bus. 

It’s unexplainable what we go through unless you have been there, and everyone is affected differently.  It’s the damage to our bodies that is the hardest!


It is emotionally hard too.  We can’t just grab food at a party or meeting, walk into any restaurant or go to the quick stop if we are hungry.  Our food choices are limited and we play Russian roulette with our bodies every time we eat away from home. 


What we wouldn’t give to be able to stop at a fast food place on the way home.


I will say, it has gotten easier over the years, places try to accommodate but the risk of anything being cross contaminated with gluten is high.  I applaud those places that work hard to provide safe meals.


Going back to why a person would eat gluten-free and my perspective:


1.  Any and all “Fad Diets” are silly.


Many people have no idea what the diet is, it just happens that their favorite celebrity on TV is doing it and they look pretty good, so why not?


2.  There are wheat allergies, (there are allergies to everything).


 Those people who have true allergies need to stay clear of wheat.  Wheat is only one part of gluten.


3.  There are many health reasons why one would eat gluten-free.


Autism, leaky gut, and digestive issues are a few of the health issues that would lead one to be gluten-free, and I know they work from experience.


4.  Those who are changing their diet to include no grains and going all whole foods will be healthier and will lose weight.


That is clean eating, not gluten-free dieting.  It just so happens when you eat all whole foods (no preservatives, no grains) you are eating gluten-free.


Those who are eating all those processed boxed gluten-free foods, breads, etc. are not healthier, and will not lose weight.  Very little nutritional value is in those gluten-free pre-made items and it is empty calories.  Our family gained a few pounds going gluten-free until we learned this.


Let's talk about what Celiac Disease is, the symptoms and treatments:


What is Celiac Disease?

Celiac disease is an autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. 

It is estimated to affect 1 in 100 people worldwide.  Two and a half million Americans are undiagnosed and are at risk for long-term health complications.


When people with Celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine and other areas.


These attacks lead to damage on the villi, small finger like projections that line the small intestine, which promote nutrient absorption.  When the villi get damaged, nutrients cannot be absorbed properly into the body.

Other damage in the body can occur as well depending on the person, amount of gluten eaten and health issues.

Celiac disease is hereditary, meaning it runs in families. People with a first-degree relative with Celiac disease (parent, child, and sibling) have a 1 in 10 risk of developing the disease.


Think of it this way - gluten is like a poison and when it enters our bodies, instead of our body fighting it; it turns on itself and destroys the body it should be protecting.  A form of suicide so to speak.  Not only does it attack the intestines, it attacks what is weakest in our body.  


Sometimes I get pneumonia, sometimes my gall bladder wigs out, and it’s different almost each time.

What are the symptoms?

Celiac disease can be difficult to diagnose because it affects people differently.  There are about 300 known symptoms which may occur in the digestive system or other parts of the body.  Some people with Celiac disease have no symptoms at all.  However, all people with Celiac disease are still at risk for long-term complications, whether or not they display any symptoms.

Some of the most common symptoms are:


Abdominal bloating and pain, attention deficit hyperactivity disorder (ADHD), chronic diarrhea, constipation, failure to thrive, fatigue, irritability and behavioral issues, vomiting and weight loss. 


Celiac Symptom Checker

How is it treated? 

Currently, the only treatment for Celiac disease is lifelong adherence to a strict gluten-free diet.


People living gluten-free must avoid foods with wheat, rye and barley, such as bread and beer.  Ingesting small amounts of gluten, like crumbs from a cutting board or toaster, can trigger bodily damage.

For fun look up all the foods that contain gluten.  Licorice, candies, cookies, gravies, you might be amazed at all the foods.

What are the Long Term Health Effects?

Autoimmune:
Autoimmune Hepatitis
Autoimmune Thyroid Disease
Juvenile Idiopathic Arthritis
Multiple Sclerosis
Primary Bilary Cirrhosis
Psoriasis
Sjögren’s Syndrome
Other Autoimmune Disorders

Nervous System:

Central and peripheral nervous system disorders
Gluten Ataxia
Peripheral Neuropathy

Neurological Manifestations:

ataxia, epileptic seizures, dementia, migraine, neuropathy, myopathy and multifocal leukoencephalopathy

Reproductive System:
Infertility and miscarriage

GI (Digestive System):

Crohn’s Disease
Gall bladder malfunction
Intestinal lymphomas and other GI cancers (malignancies)
Lactose intolerance
Microscopic Colitis
Pancreatic insufficiency
Primary Sclerosing Cholangitis
Ulcerative Colitis

 Skin:

 Dermatitis Herpetiformis
 Scleroderma

Cardiovascular System:

Idiopathic Dilated Cardiomyopathy
Iron deficiency anemia

Muscular-Skeletal System:

Early onset osteoporosis or osteopenia

Other:

Type 1 Diabetes Mellitus
Vitamin and mineral deficiencies

Read in more detail at:

http://celiac.org/celiac-disease/what-is-celiac-disease/#vCC3YR5pZ15Ia4FU.99

I was misdiagnosed and very ill for ten years, and was bedridden for months. 


Doctors gave me no hope for recovery until my daughter got sick and was correctly diagnosed.  I was out of bed within three months of going gluten free, walking and talking like a human again.  I call her my guardian angel because she saved my life although it was because she suffered like me.  Now we suffer together along with my youngest who was born with the gene turned on at birth.


Using the list above, I can name ten things I deal with daily due to years of damage done by gluten.


At first it was hard and we played the poor me card often.  Eventually, we came to our senses, pulled up our big people pants and embraced what we had to do.  We bake, cook, and enjoy our foods.  My daughter made her own gluten free wedding cake and it was delicious.

We take things to bake sales and potlucks and get asked for recipes.  Hardly anyone knows they are eating gluten free and we don’t either, because to us it’s just normal every day food. 

We still get discouraged from time to time at the inconvenience of it, but we never lack food to eat.  We simply make accommodations in advance to always have something with us for emergency situations, such as staying late at work or that surprise party that pops up at school where there are tons of cupcakes.

Every school year we make a batch of awesome looking cupcakes to store in the freezer at school. Whenever my son has a surprise birthday he grabs one of those to eat.  The teachers have discovered my cupcakes and occasionally ask if their student with allergies (who has no safe alternative to what was brought in) can have one. 


I am more than happy to share with anyone who has a need.  For this reason, I try to make the cupcakes stored at school gluten/dairy/soy/nut free.  

I have a full list of easy to make recipes on my website: 


http://www.glutenfreealaska.com/

You can also follow me on Facebook: www.facebook.com/glutenfreealaska or find me on Twitter, Instagram and on other social networks.

Questions are always welcomed, as I love helping others.


There are good days and there are bad days, but isn’t that normal with or without food restrictions and medical conditions?


Today's guest poster is Theresa Gates, who was diagnosed with Celiac disease in 2005. She authors an amazing website, Gluten Free Alaska that has an incredible amount of information, tips/tricks, gluten-free product reviews and many gluten free-recipes.


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