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Ashley Boynes

Living (Well!) With IllnessSyndicate content

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!

By Ashley Boynes
Ashley Boynes
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.

18 Reader Comments (so far…) Sign In or Register to comment

David Cain
Great article!  Here is some more information:  http://unifiedhealth.blogspot.com/
By David Cain on 06/26/2009 12:53 am
Deniseann Taylor

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.

By Deniseann Taylor on 06/26/2009 1:33 am
f p
As long as you don’t write a book plagiarizing someone else’s book on this topic. 
By f p on 06/26/2009 5:50 am
ann penn

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. 

 

 

By ann penn on 06/26/2009 12:25 pm
Lena B
Thank you Ashley!  I have an autoimmune condition called alopecia areata.  Having had other allergies all of my life, this information that you’ve graciously given is timely for me.  I know that I should be tested for CD and I plan to do so this summer. Your story will help others understand the insidious nature of chronic illnesses like those that are autoimmune.  I’m learning self-care through diet, exercise and stress management.  I wish all the best for your future Ashley; continue to stay strong.
By Lena B on 06/26/2009 2:23 pm
andrea haber
I have Crohn’s disease, Sjogren’s syndrome, interstitial cystitis and chronic fatigue syndrome. I got the first two before I was twenty, interstitial cystitis at thirty four and cfs at fifty. I met women with Crohn’s who had celiac disease who were in their 3o’s. It’s been a tough road for me, but I’m still around at sixty five. The Crohn’s went into a mysterious remission and the Sjogren’s and i.c. now flare but are not with me everyday. The CFS is.Most autoimmune diseases are women’s diseases and I suspect that is why they’ve been ignored. If you have one, odds are you’ll get two more. Lena, I’ve had incidents of alopecia areata in spots (not whole head) and have responded to 5% minoxidol. Not 2%, considered the female dose. I’ve also had spontaneous regrowth without it but now when I see a patch I go right for it. If anyone lives in the Boston area there is a small restaurant, Hearthstone Pizza, that sells gluten free pizza. I’ve spoken to the owner and he seems to know what he’s doing. I have a friend with celiac disease who was diagnosed forty years ago and eating out was treacherous for both of us (I was severely lactose intolerant then due to the Crohn’s.) Things have improved.
By andrea haber on 06/26/2009 6:17 pm
Dorothy K

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.

 

By Dorothy K on 06/27/2009 1:50 pm
Dorothy K

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!

 

By Dorothy K on 06/27/2009 1:53 pm
andrea haber
When I worked for the Crohn’s and Colitis Foundation of America I met many people who had Crohn’s or ulcerative colitis and celiac disease. I did ask my gastro about the possiblity of me having it but he told me I had multiple biopsies and he always looks for it. But I chose him because he’s one of the best in the area. I did go on a gluten free diet and didn’t improve but some people with Crohn’s and colitis do. My friend, who was diagnosed forty years ago, was having severe g.i. symptoms and was scheduled for tests that in those days wouldn’t have shown it. But she was so sick she started living on tea and toast four days before her tests and got violently ill. When she told her doctor she’d only eaten toast, he knew immediately. Although Crohn’s and ulcerative colitis have a high incidence in Jewish people, I have not heard that about celiac disease. That doesn’t mean it’s not true. The Catholic church has a special wafer for those taking communion for those with celiac disease. Doctor’s should look for it; the good ones do. My sixty three year old cousin was misdiagnosed with it when she was two years old. She did have a gluten intolerance that fortunately disappeared when she was five. Her pediatrician had five children with her symptoms. Three did have celiac disease. He probably saved all their lives. The epidemiolgy isn’t clear, but most likely it is most common in caucasions. I also have a high forehead, large eyes and a small frame (I resemble all the women in my mother’s family) but only one person I met looked like this. And yes, I know one man who has celiac disease; he developed a line of baked goods that are gluten free.
By andrea haber on 06/27/2009 9:18 pm
Lotus Kann
Ooou, good one.  Hmmm I’m wondering who you may be refering to?  Could it be a very personal friend of one Hannity, the person that also reiterate his words almost verbatim?  Hmmmm 
By Lotus Kann on 06/28/2009 9:47 am
Lotus Kann
We had a colleage 22 year old son, who had Celiac.  Went off to college and just could not maintain the diet.  Eat pizza like all of his friends.  Ended up in the hospital and after 3 days, pass away.  His stomach lining were too far gone for the doctor to do anything.  He had been off of the Celiac life style as soon as he went to college.  Totally damaged his system.  Sad. 
By Lotus Kann on 06/28/2009 9:49 am
elaine s
Just wanted to add that an additional symptom of Celiac disease is very itchy, little blisters on the elbows.  If you have gastrointestinal problems and don’t know for sure what is wrong, these little blisters are a dead giveaway that it is Celiac disease. 
By elaine s on 06/29/2009 10:47 am
C jay

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!!).

By C jay on 07/01/2009 11:36 pm
Ashley Boynes
I personally think its great that the GF diet has become "trendy" via stars like Elisabeth Hasslebeck. It will make food more commonplace and accessible for those of us who need it, and will make the adjustment to the lifestyle easier for those who are not yet diagosed and transitioning! :)
By Ashley Boynes on 07/08/2009 10:38 am
Julie  Gibson
By Julie Gibson on 07/13/2009 6:12 am