Diary of a Celiac

Tuesday, January 24, 2012

How it all began . . . .

As with most people with Celiac Disease my illness began many many years ago.
I was born with digestive problems, my Mom thought that maybe it was due to me being born 1 month late.  Shortly after I was born they discovered that I could not tolerate formula.  My Mom said that they were trying a new formula every couple of days, which must have been very expensive.  There was no WIC program available at that time, so my parents were having to pay for all this.  Many of the formulas that they tried were more than $4.00 per can!  Of course I was lactose intolerant which made the formulas even more expensive. 
I ended up hospitalized very shortly after my birth because I could not keep anything down or it went straight through me.  The nurses sent me home and my parents were advised to give me gingerale.  It was felt that I would be ok as long as they could maintain my weight.  My Mom said that someone recommended a doctor.  The doctor was Indian and had a recommendation that no one else had tried.  She recommended Kanana Banana Flakes.  My Mom said that the Kanana Banana flakes saved my life.  After a short time on the Kanana Banana Flakes I was able to keep down a Soy formula.  My health seemed to improve.  I appeared to be a healthy child.

At age 19 I began to have some serious digestive issues.  I had a lower GI done and was told that I had Ulcerative Colitis and Irritable Bowel Syndrome.  I was back and forth to the doctors for months.  The doctor was discussing a Colostomy!  I knew that I would live with the discomfort and difficulties rather than go that far!  So I stopped going to the doctors and just adjusted my lifestyle so I could accomodate the frequent trips to the bathroom and just accepted that I was going to have abdominal pain.

I had 2 healthy children with a miscarriage in between them.  I breastfed both of my children.  Shortly after the birth of my second child I had to have a complete hysterectomy due to dermoid cysts which had regrown.   

At age 28 I began having heartburn nearly every day.  They did an Endoscopy and advised that I would need to take medication to repair the damage that was done to my esophogus due to the heartburn.  I took the medication and the heartburn improved and my esophagus healed which was confirmed with a second Endoscopy.

At age 35 I was diagnosed with Fibromyalgia. 

So here I am at the current time in my life. . . . 45 years old, living with abdominal pain, frequent bowel movements, migraines, joint pain,  heartburn . . . . . . . not much fun.
I decided that I should head back to the doctor.  The doctor referred me to a Digestive Disease Specialist who suggested a Endoscopy and a Colonoscopy.  Those 2 tests were done on the 28th of December.  After the procedure the doctor advised me that he had removed a polyp and that he had taken a couple of biopsies.  He also advised me that I had a hiatal hernia.  At least it seemed like we were making progress.  On January 6th of this year the doctors office called and advised me that the intestinal biopsy showed that I had Celiac disease and that they wanted me to have some blood work done.  On the 9th of January I had my blood work done and began the task of researching what Celiac disease was.  I had never heard of Celiac disease and did not know what Celiac disease was, and my doctors appointment is not until the 31st of this month.  I am not one to wait and to be honest, I am tired of being sick!  So I researched treatments and found that I needed to eliminate gluten.  Seemed simple enough!  Boy was I wrong on that one!  I purchased 2 books, Wheat Belly and Celiac Disease for Dummies.  I read both of them and began the task of trying to understand what I could and could not eat.  I cleaned out my pantry, refrigerator and freezer.  We now have one shelf in the pantry that has food with gluten in it.  That way anyone preparing food in my kitchen will know what I can and can not have.  So far so good!  So eating at home has been fairly easy.  I have always loved vegetables and meals were pretty simple to adjust to with my new dietary requirements or restrictions depending on how you want to look at it.
Eating out . . . . that is another story altogether!  My first trip out to a restaurant was January 13th and the restaurant was a local mexican restaurant, I knew that I needed to ask  questions to be sure that what I was ordering was gluten free.  I asked lots and lots of question.  I asked so many questions that I was beginning to be concerned that I was embarrasing my husband, daughter and son-in law!  I knew that I did not want to be sick and that I had to be sure.  Well after much conversation with the server I placed my order.  I enjoyed the food and the company!  Within 1 hour of eating I was so sick.  It was such a disappointment.  I felt like I had asked all the right questions and made a good food selection.  Obviously not all restaurants take gluten free dietary requirements seriously.  I will not be going back to that restaurant any time soon!
I had a short cruise on the Disney Dream on the 19th and was very worried about how they would handle my dietary requirements.  I let them know and they did an amazing job!  I did not receive any gluten while on the ship!  They made it very easy and the food was very good (except for the rolls). 
Today is the 24th of January and I have been or tried to be gluten free for 14 days.  I have had my ups and downs.  Today I decided that I would have celery with peanut butter. . . . I made sure the peanut butter was gluten free. . . . . I did not think about having made sandwiches with that jar of peanut butter.  I definitely consumed some gluten!  I did not even think about cross contamination.  I will make sure not to do that again!  Now we have 2 jars of peanut butter.  One will be labeled for me so everyone will know not to contaminate it with gluten.

It would be so nice if there was a local support group to help with the initial questions!  But I have been unable to find one here.

I have subscribed to lots of blogs for Gluten Free and Celiac Disease and will be posting information about recipes that I have tried, ideas about how to feed a household that has many dietary requirements without making lots of extra work and hopefully how to save money on gluten free foods!
If anyone reading this has any suggestions please feel free to comment!  I need all the help I can get and hopefully I will be able to help others once I understand the disease more!

The name of my blog was suggested by my youngest daughter!  My maiden name was Pillsbury, she thought it would be a good play on words and I agree.  I am so blessed to have a wonderful and understanding husband, 2 amazing daughters and my Mom.  My Mom and my daughters all do a great job finding me recipes to try.  We will need to find a Pumpkin Cranberry Bread that is gluten free!  I think I will miss that the most.

Thank you for reading my first post and I look forward to updating it!

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