Author: mgclarkco

When I got diagnosed, one of my concerns was that I enjoyed beer. I has attended almost every Great American Beer Festival since I turned twenty-one years old and I was a member of the American Home Brewers Association. I have spent many a weekend touring the great breweries of Colorado and this diagnosis told me those days were over.

While that answer is not completely true, a person with Celiac Disease must pay attention. The first thing is that they must understand gluten free versus gluten reduced. A gluten free beer is made without the use of any wheat whereas gluten reduced beer is made with wheat and then a process is completed to reduce the gluten. The most important thing to know once you read through all of the science is that most people with Celiac Disease must know the level of gluten to consume.

Why is this important? Go to a bar or brewery and ask if they have gluten free beer and if they have gluten reduced beer, the answer will be yes. I experienced this first hand at The Yard House. The well intended waiter provided me the beer in a glass and only upon getting the second one with a bottle did I see the “gluten reduced” label.

“Gluten reduced” is not the same as gluten free. By knowing your condition and understanding the labelling a person with Celiac can make an informed decision on their choice of beer.

I have seen news stories about kids bullying other kids over allergies to nuts or dairy and the like. I always thought it was unfortunate but labeled it as school yard antics. I was, unfortunately, wrong to think this was isolated to kids.

Living with Celiac Disease is a 24/7 job that I take ownership in, as I want my health to be better. What I have found is that many people will make comments that seem harmless enough but they fell like the actions of bully’s. No one chooses to have the disease, rather they must live with it. What does that mean? No two people are the same but I can tell you what it means for me. It means being vigilant so that I do not feel ill, have eczema, having urgency issues, having no energy and having diarrhea.

It also means constant questions eating out, work lunches, etc. What is telling and frustrating that you can have the same conversation several times in the same year.  However, the problem is that people without Celiac Disease do not understand the restriction of a Celiac Diet.  I was told that one slice of pizza wouldn’t make me sick.  I had made a demonstration that educated my co-workers on just sensitive I am to gluten.  This is something I hope to share with you soon.

The bottom line is that people with diet restrictions should be respected and not questioned about their disease.

What does anyone do when they need an answer? They search the Internet and that is just what I did. Below are the biggest things I learned in the first 24 hours after the diagnosis:

Celiac Disease, is not an allergy but rather your body responding to gluten in a negative way. The response is that gluten takes the inner lining of your stomach and destroys it making it flat and unable to absorb nutrients, as shown in my low iron levels.

Celiac Disease affects between one and two million people in the United States.

It often takes ten to twenty years for a correct diagnosis of Celiac Disease.

Many people who suffer from Celiac Disease often suffer other conditions, a notable one being an allergy to dairy. I do not have an allergy to dairy but may possibly have Microscopic Colitis. (Like Celiac Disease, diagnosing Microscopic Colitis takes time.)

If you are on a gluten free diet and you accidentally eat gluten, it is called being glutened.

One crumb of gluten can have devastating effects on a person with Celiac Disease. It is not just an upset stomach but can take weeks to recover from.

Once you start a gluten free diet, it can takes months (up to three to six) before you will feel better. 

At my yearly physical, my treating physician requested blood work be completed. Something that the doctor had been tracking was my fatty liver numbers. From what I have learned this number can tell you the fat in your liver which is a good indicator or the fat in your other organs and thus is really critical. Up to this time, if my weight was in check. The fatty liver number was generally acceptable but this year the number increased with my weight staying the same which concerned the doctor and led her to refer me to a Gastroenterologist.

At my first appointment, the specialist spent a great deal of time reviewing my records and ruling out alcohol fatty liver. Once that was done, a battery of blood tests was run. The one test result that the doctor kept reiterating is that my iron level was EXTREMELY low. While the blood test was telling, the doctor ordered an endoscopy to get biopsy of the stomach for a pathologist to review the samples to determine if I had Celiac Disease.

Less than two weeks later I had the procedure and within 72 hours I was diagnosed with Celiac Disease.

That tells you how the doctors diagnosed me but an equally important part of any medical diagnosis is the symptoms I have had and worked to treat. Over the past ten years I have had digestion issues which were treated and fixed but did not resolve the problems ultimately associated with Celiac Disease. Specifically inconsistent bowel movements and urgency.

Additionally, there are other symptoms I had that are associated with Celiac Disease that included Anxiety, Excessive Gas, Eczema, and Recurring Upset Stomach.

After getting around the issue of drinking beer, the issue of eating was the next issue to tackle. I didn’t eat out for a month after I was diagnosed. After reading about the issues that people had dining out and all of the issues with cross contamination, I just didn’t want the hassle. I wanted to get my gluten free lifestyle under control. However, I hit the inevitable point when I wanted to start dining out. The first place I started was the Internet and that lead me to The Essential Gluten Free Restaurant Guide by Triumph Dining.

The book was a real jumping off point for me to see who was generally accepted as gluten free. I reviewed the book and all of my dining options and their websites and started with P.F. Chang’s which is a Chinese Bistro. I suggest this should be on any Celiac Disease persons list as a go to restaurant.

To start with, they take Celiac Disease very serious and handle it in a way that you can dine without fear. First and foremost the staff is trained on the proper way to handle and have a separate wok and utensils to cook so cross contamination doesn’t happen. Next they have a gluten free menu. Many restaurants have gluten free options labeled on their menu or an online menu but cross contamination is real talking with your waiter can give you a sense of how well the kitchen addresses this challenge.

I have done various writings for organizations that I have worked with but never felt compelled to share my thoughts with the Internet. However, when I was diagnosed with Celiac Disease in May 2018, I had to do a lot of learning, I had to change a lot of things, and I discovered that there is a lot of information to sift through. I felt that I have something valuable to offer people who have Celiac Disease as many individuals who have Celiac.

I have been on my gluten free journey for approximately two months and my gastroenterologist has said that my improvements are remarkable.

As I went through this process, I started documenting sites, recording what restaurants are truly friendly to people with Celiac Disease. As I shared information with my dietitian, treating physician, and gastroenterologist, I was interested to see them take notes on what I found. They took notes because I had the back-up to support what I had found.

Given the fact that I was compiling this information, I thought why not share what I had learned and do it with two key pieces of information. The first is to date when I learned this fact and/or last checked it and secondly to give the back-up to the information. As you will read in my upcoming blog, these two pieces of information are key to ensuring the best gluten free experience possible.

What does anyone do when they need an answer? They search the Internet and that is just what I did. Below are the biggest things I learned in the first 24 hours after the diagnosis:

Celiac Disease, is not an allergy but rather your body responding to gluten in a negative way. The response is that gluten takes the inner lining of your stomach and destroys it making it flat and unable to absorb nutrients, as shown in my low iron levels.

Celiac Disease affects between one and two million people in the United States.

It often takes ten to twenty years for a correct diagnosis of Celiac Disease.

Many people who suffer from Celiac Disease often suffer other conditions, a notable one being an allergy to dairy. I do not have an allergy to dairy but may possibly have Microscopic Colitis. (Like Celiac Disease, diagnosing Microscopic Colitis takes time.)

If you are on a gluten free diet and you accidentally eat gluten, it is called being glutened.

One crumb of gluten can have devastating effects on a person with Celiac Disease. It is not just an upset stomach but can take weeks to recover from.

Once you start a gluten free diet, it can takes months (up to three to six) before you will feel better.

At my yearly physical, my treating physician requested blood work be completed. Something that the doctor had been tracking was my fatty liver numbers. From what I have learned this number can tell you the fat in your liver which is a good indicator of the fat in your other organs and thus is really critical. Up to this time, my weight was in check. The fatty liver number was generally acceptable but this year the number increased with my weight staying the same which concerned the doctor and led her to refer me to a Gastroenterologist. 

At my first appointment, the specialist spent a great deal of time reviewing my records and ruling out alcohol fatty liver. Once that was done, a battery of blood tests was run. The one test result that the doctor kept reiterating is that my iron level was EXTREMELY low. While the blood test was telling, the doctor ordered an endoscopy to get biopsy of the stomach for a pathologist to review the samples to determine if I had Celiac Disease. 

Less than two weeks later I had the procedure and within 72 hours I was diagnosed with Celiac Disease. 

That tells you how the doctors diagnosed me but an equally important part of any medical diagnosis is the symptoms I have had and worked to treat. Over the past ten years I have had digestion issues which were treated and fixed but did not resolve the problems ultimately associated with Celiac Disease. Specifically inconsistent bowel movements and urgency. 

Additionally, there are other symptoms I had that are associated with Celiac Disease that included Anxiety, Excessive Gas, Eczema, and Recurring Upset Stomach.

Before I provide insight on how I was diagnosed, I want to discuss the two biggest things that I have learned about living a gluten free lifestyle. The first revolves around people who do not suffer from Celiac Disease but rather choose to live a gluten free lifestyle. They have been tremendously helpful in making gluten free options readily available at the grocery stores and restaurants. The downside is they can order a dish and if there is cross-contamination it will not have the same devastating effects as to someone who has Celiac Disease. The issue is that some restaurants and their staff treat a gluten free request as trivial or in fashion and thus the chance of gluten contamination can be rather large. I have been told by a bartender that they have gluten free beer only to find it is gluten reduced beer which I cannot enjoy.

In May of 2018, I was diagnosed with Celiac Disease. Prior to an office visit in April I had never heard of Celiac Disease. As such, the last several years have been an educational process for me as I work to understand what Celiac Disease is, how gluten has and continues to affect me, and how to lead a gluten free life. The goal of this blog is to share the steps I have taken, the resources I found valuable, and to let people know that this is a journey and taking it one step at a time is okay.

The second thing I have learned is that the Internet is your best friend and worst enemy. People are often posting what is or is not gluten at a restaurant or if a particular food is gluten free. The problem I have found is that these posts or sites often are not dated and thus the information can be outdated. The people who choose to live a gluten free lifestyle have made products and restaurants more gluten friendly, especially over the last five years. The problem comes when you search for a particular product a post from 15 years ago may pop up before the relevant post from this year. The lesson is to be observant to what you are seeing on the Internet.

Through this blog I want to let provide you with the resources that I have found helpful in hopes that it will help you!

In May of 2018, I was diagnosed with Celiac Disease. Prior to an office visit in April I had never heard of Celiac Disease. As such, the last two months have been an educational process for me as I work to understand what Celiac Disease is, how gluten has and continues to affect me, and how to lead a gluten free life. The goal of this blog is to share the steps I have taken, the resources I found valuable, and let anyone with Celiac Disease know they are their own best advocate.

Before I provide insight on how I was diagnosed, I want to discuss the two biggest things that I have learned about living a gluten free lifestyle. The first revolves around people who do not suffer from Celiac Disease but rather choose to live a gluten free lifestyle. They have been tremendously helpful in making gluten free options readily available at the grocery stores and restaurants. The downside is they can order a dish and if there is cross-contamination it will not have the same devastating effects as to someone who has Celiac Disease. The issue is that some restaurants and their staff treat a gluten free request not as seriously and thus the chance of gluten contamination can be rather large. I have been told by a bartender that they have gluten free beer only to find it is gluten reduced beer which in most cases I cannot enjoy.

The second thing I have learned is that the Internet is your best friend and worst enemy. People are often posting what is or is not gluten at a restaurant or if a particular food is gluten free. The problem I have found is that these posts or sites often are not dated and thus the information can be outdated. The people who choose to live a gluten free lifestyle have made products and restaurants more gluten friendly, especially over the last ten years. The problem comes when you search for a particular product a post from 15 years ago may pop up before the relevant post from this year. The lesson is to be observant to what you are seeing on the Internet.

Lastly, I have learned that how Celiac Disease affects each person is different so what works for one person may not work for another. Take the move to a gluten free lifestyle in small steps and accept that there will be step backs.