Living (Well!) With Illness
I’m 25 years old and I have health conditions. I was recently
diagnosed with Celiac Disease, even though the ‘average’ onset of CD
is more commonly diagnosed in women over the age of 40. Symptoms of
Rheumatoid Arthritis typically begin after the age of 40; I was
diagnosed with Juvenile Rheumatoid Arthritis, or JRA, at age 11. This
blog is about my personal struggles. Living with invisible autoimmune
conditions can be discouraging at times – but you don’t have to go
through it alone. Here, I will share my personal stories and thoughts,
as well as news on medical breakthroughs and ways to live well while
coping with illness. I’m also here to encourage dialogue about living
a happy, normal life – despite feeling sick at times. Like I said, I’m
25 years old and have health conditions. But they don’t have me.
Living (Well!) With Illness | 06/25/2009 11:00 pm
Creating Awareness: Celiac Disease – Follow Your Gut Instinct!
In September – on my 25th birthday, to be exact – I got a call from my endocrinologist that my anti-gliadin AB antibodies were high and that I needed to schedule an appointment to see her. Like anyone who is not an expert in medical jargon, I immediately panicked – but thank goodness for Google, I found that this is only an indicator of what appeared to be a fairly harmless illness called Celiac Disease. What a relief! I thought that I would go on a very strict gluten-free diet, and all would be fine.
I was wrong.
While it is often true, Celiac Disease – a chronic malabsorptive autoimmune disease – can be very serious, especially if left untreated. Also, it can affect more than just the digestive system, as initially thought. I’m here to spread the word and encourage more people to be tested for Celiac Disease if experiencing "mystery symptoms" – it could be the answer you’ve been looking for!
Celiac Disease is very common, though many people have never even heard of it. For those of you who are unfamiliar with Celiac Disease, it is a genetic autoimmune condition in which a person’s intolerance to the protein gluten triggers an immune-system response that damages the villi of the small intestine. (The villi are the small fingerlike projections that are responsible for absorbing the vitamins, minerals and nutrients out of food.) When a person with Celiac Disease ingests gluten, these villi become more and more damaged – over time, becoming scalloped or even flattened.
There is no cure. The only treatment for Celiac Disease is a strict and lifelong gluten-free diet. Gluten can be found in wheat, barley and rye, as well as certain additives and preservatives. People with Celiac have to be careful of cross contamination, and must use their own butter, toasters, etc. to avoid crumbs and particles from bread and other "to-be-avoided" foods. Many restaurants, including chains like Outback Steakhouse and UNO Chicago Grille offer gluten-free or "Celiac-friendly" menus, and the hopes are that more are on the horizon. Specialty health-food stores and even your local grocery store are beginning to carry foods specially labeled as "gluten-free." However, for some it is difficult to part with pasta, pizza, beer and those luscious desserts – but well worth it in the long run.
One may be inclined to cheat on this diet – but I implore you to reconsider! If left untreated, or if one continually eats products containing gluten, Celiac can cause infertility, intestinal lymphoma, colorectal cancers, gall-bladder malfunction, life-threatening changes to the small bowel, pancreatic insufficiency, vitamin deficiency and both neurological and cognitive complications. Due to the combination of it being both an autoimmune disease and a condition of malnourishment, Celiac can affect patients on the digestive, hormonal, metabolic and neurological levels.
Common symptoms of Celiac are of a gastrointestinal nature – bloating, nausea, vomiting, irregular bowel movements, reflux and diarrhea. Sometimes, it can be misdiagnosed as or come along with IBS and other gastrointestinal disorders. However, there are other symptoms as well that are becoming more readily recognized as Celiac symptoms. These include (but are not limited to) fatigue, migraines, neuropathy, joint and muscle pains and weight loss. Recently, a doctor even informed me that I had "the look" of a Celiac patient – large eyes, high forehead and a slight build with a short stature.
I personally went 25 years undiagnosed with this disease, and did not even have many of the "typical" digestive symptoms. While there is no way to tell how long I have had Celiac Disease, I have been plagued by chronic health problems my whole life. This, coupled with the fact that my anti-gliadin levels were high and my villi were completely flattened would indicate an advanced case of Celiac Disease. It has affected me in many ways both physically and emotionally, and has also affected my ability to live my everyday life as normal. I have not yet responded to the gluten-free diet, and have experienced neurological complications from the Celiac Disease, but I am living each day in hopes that I will improve with time.
I was wrong.
While it is often true, Celiac Disease – a chronic malabsorptive autoimmune disease – can be very serious, especially if left untreated. Also, it can affect more than just the digestive system, as initially thought. I’m here to spread the word and encourage more people to be tested for Celiac Disease if experiencing "mystery symptoms" – it could be the answer you’ve been looking for!
Celiac Disease is very common, though many people have never even heard of it. For those of you who are unfamiliar with Celiac Disease, it is a genetic autoimmune condition in which a person’s intolerance to the protein gluten triggers an immune-system response that damages the villi of the small intestine. (The villi are the small fingerlike projections that are responsible for absorbing the vitamins, minerals and nutrients out of food.) When a person with Celiac Disease ingests gluten, these villi become more and more damaged – over time, becoming scalloped or even flattened.
There is no cure. The only treatment for Celiac Disease is a strict and lifelong gluten-free diet. Gluten can be found in wheat, barley and rye, as well as certain additives and preservatives. People with Celiac have to be careful of cross contamination, and must use their own butter, toasters, etc. to avoid crumbs and particles from bread and other "to-be-avoided" foods. Many restaurants, including chains like Outback Steakhouse and UNO Chicago Grille offer gluten-free or "Celiac-friendly" menus, and the hopes are that more are on the horizon. Specialty health-food stores and even your local grocery store are beginning to carry foods specially labeled as "gluten-free." However, for some it is difficult to part with pasta, pizza, beer and those luscious desserts – but well worth it in the long run.
One may be inclined to cheat on this diet – but I implore you to reconsider! If left untreated, or if one continually eats products containing gluten, Celiac can cause infertility, intestinal lymphoma, colorectal cancers, gall-bladder malfunction, life-threatening changes to the small bowel, pancreatic insufficiency, vitamin deficiency and both neurological and cognitive complications. Due to the combination of it being both an autoimmune disease and a condition of malnourishment, Celiac can affect patients on the digestive, hormonal, metabolic and neurological levels.
Common symptoms of Celiac are of a gastrointestinal nature – bloating, nausea, vomiting, irregular bowel movements, reflux and diarrhea. Sometimes, it can be misdiagnosed as or come along with IBS and other gastrointestinal disorders. However, there are other symptoms as well that are becoming more readily recognized as Celiac symptoms. These include (but are not limited to) fatigue, migraines, neuropathy, joint and muscle pains and weight loss. Recently, a doctor even informed me that I had "the look" of a Celiac patient – large eyes, high forehead and a slight build with a short stature.
I personally went 25 years undiagnosed with this disease, and did not even have many of the "typical" digestive symptoms. While there is no way to tell how long I have had Celiac Disease, I have been plagued by chronic health problems my whole life. This, coupled with the fact that my anti-gliadin levels were high and my villi were completely flattened would indicate an advanced case of Celiac Disease. It has affected me in many ways both physically and emotionally, and has also affected my ability to live my everyday life as normal. I have not yet responded to the gluten-free diet, and have experienced neurological complications from the Celiac Disease, but I am living each day in hopes that I will improve with time.
Read more about: Ashley Boynes, blogs, Celiac Disease, Diet, Gluten, Health, Living Well With Illness, Medical, Research

























18 Reader Comments (so far…) Sign In or Register to comment
Good article, I feel bad for anyone with a digestive disorder.
I would like to recommend Elizabeth (from the VIEW) book to anyone with Celiaic’s disease, even though I do not have it myself, I do have IBS and am unable to eat almost anything now. The foods and recipes in this book has helped me to discover things I can eat and they don’t make me sick.
One thing I can’t stand though is brown rice, can’t dress it up anyway that I would like it.
A few years ago I cleared up some digestive problems by going on a gluten free diet. I was surprised when a chronic skin condition also cleared up.
Gluten intolerance is very prevalent among people of Scandinavian, Irish, and Italian extraction (though not exclusive to these groups).
To stay on a GF diet one must read labels constantly. It is amazing how many foods have hidden gluten in them.
The only way to really expose the extent of this in the US population (where most doctors deny that it is a common challenge) is to have oneself tested. The more people who get diagnosed, the more it will be taken seriously.
I have urged my siblings to get tested, but so far they have ignored my suggestion… one can only do so much.
I was treated for colitis for years before it was discovered that I had celiac. I was practically on my deathbed in the hospital when I changed gastroenterologists and he diagnosed it. Because of the delay in treatment I also have ulcers and occasional gall bladder problems. Until recently very few people, including doctors and nurses were familiar with celiac. As it is becoming more well known, and diagnosed correctly, more and more gluten free products (edible ones) are being made available not only in health stores but in some regular supermarkets. My mother was ill for 30+ years and had a good portion of her stomach removed. Since celiac does run in families I am positive that she too had celiac but was misdiagnosed. And she was being treated by one of the country’s leading gastroenterologists in Columbia Pres. hospital in NYC.
By the way, it is not a woman’s disease. I have many men with it. Although Ann Penn was told it is prevelant with Scandanavians, Italians and Irish I was told that it was prevelant with Jewish people. See-they’re still not totally knowledgable about it!
What irritates me is that suddenly gluten free diets are becoming "chic" with some of your Hollywood faddists.
By the way. be careful of Elisabeth’s book. There are some very good recipes in there but there is also some wrong information. This was told to me by both my nutritionist and doctor.
Correction-I have not "had" many men with it-I know many men with it! It might have been interesting if the first statement was right!
Gracious, Elaine, what great information.
I have known of 2 women in the past 4 years who were on Metformin (for early diabetes), developed a skin "rash (first on arms and elbows)." Each went to a dermantologist after a FM doc failed to help them. They were both put on Cephalexin and developed Bullous Pemphighoid, a fatal condition.
Ultimately, both diagnosed with Stage IV colon cancer within a year of the skin diagnosis due to being given blood transfusions to counteract the effects of antirecjection drug given to stop the BP! Later, one worked to the point of her own death to make pharmacists and doctors realize the connection and that Cephalexin should never be given to anyone on Metformin much less for a skin condition until BP was ruled out.
We all wondered if their conditions were all caused from undiagnosed colon cancer. (but neither one had a GP or FM doc who ordered a routine colonoscopy!!).