Easy Gluten Free Living

Posts Tagged ‘Celiac Sprue’

I thought I should let you all know why I have been  missing in action this week.

After 22 years of a gluten free diet and never having any follow-ups, my daughter thought that I should have a check up. 

I’ve been having some indigestion type discomfort for the past several months.  My daughter is a Cardiovascular Technologist in the cath lab of one of the major hospitals in Pittsburgh, so naturally we went down the road of ruling out heart disease.  I had a walking stress test which was fine, in fact the cardiologist told me that my “heart was as healthy as a horse”.  Thank you, I think. 

So next off to the Gastroenterologist.  She read my diagnosis from 22 years ago, asked me my age and said, “I want you to have an Endoscopy and a Colonoscopy.  Yeah

So this week I’ve been preparing for my tests that I had done yesterday.  Monday night was my last real meal.  Tuesday was a day of all liquids.  That was fun, especially being at work. 

Tuesday evening at 6:30 pm I got to start my magic elixer.  It wasn’t a glass of fine wine, but it didn’t taste as bad as everyone kept telling me it would.  I’ll spare you the details of what happened over the next 3 hours, but bright and early Wednesday morning I was off to the hospital for my tests.

The testing went smoothly and a lot faster than I anticipated.  I got most of the results back right away.  Everything was normal and the doctor said that there was some rippling typical of celiac disease but not abnormal.  In fact if he wouldn’t have known I had Celiac Disease he would not have attributed the rippling to that.   So my vigilance of a gluten free diet has been successful. 

Proof positive that if you are careful, watch your diet and stay on a gluten free diet.  You can stay healthy, even without follow up medical attention.

Oh and the diagnosis for my digestive discomfort?  Acid Reflux.  So I take an acid controller twice a day.  Well at least I know I’m still healthy.

By now it is Thanksgiving 1987 and I am down to 100 pounds and beginning to feel so weak that I can hardly keep up with my family.  It takes all my strength to get my kids off to school and my husband off to work in the morning.  My house is a wreck, dishes are piling up in the sink.

I am feeling numbness in my face and tingling in my hands.  I am constantly hungry and extremely thirsty.  After I eat, I have extremely bad stomach aches and bloating.  I can’t venture too far from home due to the need of being near a bathroom at all times.

I need to go Christmas shopping for my children, but I am so weak by now that I spend most of my days in my pajamas and robe.  Nothing seems to help and my PCP really can’t tell me what is wrong.

Finally, the last straw for my husband is the weekend after Thanksgiving.  We were at my in-laws for the weekend and I just couldn’t wait to get home.  The diarrhea is almost non stop now.  If I eat, I need a bathroom, period. 

My husband tells me to call my gynecologist.  So first thing Monday morning I do.  Thankfully, he gives me the name of a gastroenterologist.  I call him, go see him, and schedule a biopsy of my small intestine.  This in itself is a miracle, because there weren’t a whole lot of Doctors with any knowledge of Celiac Disease back then.  Thank you Dr. Richard Raizman for saving my life.

The biopsy shows that the villi in my small intestine is pretty much gone.  Villi are microscopic hair like fingers in your small intestine that greatly increase the surface of your intestines so that your body can catch and absorb digested nutrients that your body needs, more efficiently.

The diagnosis, I have Celiac Disease or at that time they called it Celiac Sprue.  Basically, the food I am eating is poisoning me.  I am told I need to cut out all foods with gluten in my diet.  No bread, no pasta, no pizza, nothing with wheat, barley, rye, or oats.  At first, I really have no idea what this is going to mean for my family and I.

Then I go to the grocery store and begin reading labels.  Do you know that gluten or wheat is found in almost every processed food?   Soups, cereal, gravy, soy sauce.  It is hidden in just about everything that I have fed my family over the past 11 years that my husband and I have been married.  I am devastated.

Unlike now, store bought gluten free food is almost non-existant and what is out there is awful.  It tastes like saw dust.  When my husband and I got married I didn’t know how to cook.  His love and encouragement helped me to become a great cook.   Now I have to start all over again and re-learn how to make good food that won’t kill me.

My story continues tomarrow.

Mary Blackburn

Living Gluten Free

The year was 1987, I was a happily married 28 year old mother of 2 children, a son 9 and a daughter 8.  I had just become my daughter’s Girl Scout co-leader and we were off on our first camping trip to Girl Scout Camp Henry Kaufmann in the beautiful Laurel Mountains of Western Pennsylvania.

It was to be a 3 night 4 day trip, we were both so excited.  My family are seasoned campers, my husband and I had been camping pretty much since we first met and our children had their first camping trip when our son was 22 months old and our daughter was 6 months old.  So this was not a new thing, just that we would be staying in tents in a Girl Scout camp instead of a state campground.

Camp Henry Kaufman had it’s own full time cook and all the campers had their meals in the dining hall.  The food was great, and Cookie made all her own homemade breads and rolls for the meals.  I will later come to find out that all those great homemade glutenous breads and rolls are slowly killing me.

After day number 2, I came down with a severe case of diarrhea.  I spent a lot of time in the latrine, and sucking down large amounts of Kaopectate.  This was in the summer of ’87, the month of July to be exact and Pennsylvania was having a pretty dry season that year.  I assumed that I had picked up a case of giardia from drinking the water at camp. 

When I came home my symtoms really didn’t get any better.  I went to my primary care physician and he pretty much confirmed my thoughts on the giardia (without doing any testing).  So he gave me a stronger anti-diarrheal.  It seemed to work.

Now I have to say we were into August by now and my father-in-law had a huge garden that we pretty much ate out of all August and September.  Good things, like, fresh corn on the cob, cucumbers and onions, tomatoes, squash, zucchini,  and things like that.  Not a lot of bread or pasta meals during this time of year.  So my “problem” got better.  My conclusion…, must have been the water at camp.

However, when the seasons changed and we started eating normally again, my problem came back with a vengeance.  So back to the PCP for more anti-diarrhea medication.  Only this time it didn’t seem to work. 

I kept taking the medication, but the problem persisted.  I soon went from a healthy 135 lb woman to a tired, cranky, sick 100 lb skeleton by Thanksgiving.

Tune in tomarrow and I will give you the “Rest of the Story”.

Mary Blackburn

Living Gluten Free

Welcome to Easy Gluten Free Living, a website for Celiacs, by a celiac.  In case you stumbled upon this website by accident, let me explain to you what a celiac is.

A celiac is a person with an intollerance to gluten, protein found in just about every grain except, corn, rice and depending on who you listen to some gluten-free oats, (those processed only in a plant that does not process glutenous grains).  The reason I say depending on who you listen to follows.  I pulled this right off of the Celiac Sprue Association’s website:

“Inconclusive information exists concerning the inclusion of oats in the gluten-free diet.  Some clinical studies indicate that uncontaminated oats may be tolerated by some people with CD.  Other studies indicate that some people with CD have an immune response to oats (avenin).  Currently, there is no way to identify which people with CD may tolerate oats.  Therefore caution is advised when considering the use of uncontaminated oats in a gluten-free diet.”*

When I was diagnosed 22 years ago, I was told no wheat, barley, rye, or oats, period.  So I have basically stuck to that instruction, until recently.  However, I haven’t injested enough oats as of yet to make a decision for myself.  I’ll let you know here if I find that I am having a reaction to the “Gluten-Free Oats”.

This website will be a place for information about Celiac Disease and how to keep you or your loved one happy and healthy on a gluten free diet.

I named this site Easy Gluten Free Living because once you get over the shock and denial of being intollerant, (or as most people say “allergic”) to gluten you will find that it really isn’t that bad, just a bit inconvienient.

I hope that you will find this website informative, helpful and inspiring.  In the days and weeks to come I will be giving you meal/menu ideas to help with mealtime.

Come back often and please feel free to comment or ask questions.

Mary Blackburn

Living Gluten Free