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Terri's Story


Terri's Story

My journey to finding out what was wrong for me took about 10 years. I was going to the same physician for 13 years. I had a busy life like most people--raising two children, working and tending to everything mothers do after the work day is completed. I was at the time a pre-kindergarten teacher. My life was in full motion all the time. After moving into a house of our own when my children were completing their elementary school years. It was a challenge dealing with them as teenagers. In the transition of a move and the eventual end to my marriage. Things within my body started to change. I had stomach pains frequently and needed to go to the bathroom at a moments notice. Everywhere I went I always needed to know where the ladies room was located. I had conferred with my doctor about feeling tired much of the time and that I had diarrhea. She said it was irritable bowel syndrome (IBS). So, I gave up any fatty and fried foods. This seemed to help some, but it didn't give me total relief. Every morning at work, I ate my breakfast and this consisted of a multigrain bar and grapefruit juice. Shortly after eating that, my stomach would hurt for a while and then I had to go to the ladies room and suffer more pain as I went.

I recall one evening being scared because I had such great pains that I thought maybe something had burst inside of me. I called my doctor and was unsure of whether to go to the emergency room. I ended up staying home because my doctor told me I was having an intestinal spasm. I was eventually given medication for when I had spasms and this not only slowed down my digestive track, it also made me very tired. I couldn't function like that at work with 20 (4 and 5) year old children.

Every year at my annual physical, I shared with my doctor that I was tired and that I was wondering if there was anything else I could do. She just shrugged this off and said that I had a lot of stress in my life going through a divorce and that in time I would regain my normal energy levels.

Eventually as the stress continued in my life and I ate a hotdog one evening, I thought I was going to die. As the pain started it grabbed my insides and it felt like someone had not only punched me in the stomach, but was trying to pull my insides out. It was then that I decided it was time to change doctors. Besides being really tired and having frequent runs to the ladies room, there were nights I lie in bed and all the bones in body hurt. I thought I was loosing my mind.

I decided it was time to switch doctors. As I explained my symptoms to my new doctor she said she had a pretty good idea of what was wrong with me. She had a room mate while attending medical school that had these types of symptoms. She learned about the disease while finishing her degree in medicine. She sent me to the lab in the same building for a blood test. Within 4 days she called me at work and told me my numbers were off the chart and that I had Celiac Disease. I was relieved to know I wasn't imagining everything my body was telling me.

In the process of finding out what I had, I had to venture out on my own to figure out what I could eat. That was not an easy task for I was told by my new doctor to go to the internet for the information. As many of us who have been diagnosed have notice, the internet can provide some inaccurate information.

I didn't think I could eat anything. Then I was lucky enough to meet a woman at work who had a son with the same disease. She gave me the name of the support group for Celiacs that offered me accurate information on the disease along with stores where I could buy gluten- free foods.

It has been over 5 years and I have developed a pallet for new tastes. I have found foods I like and a loaf of bread that actually tastes good to me. I enjoy some baking and some things I just do without.

I have never cheated on my diet because I want to feel well. I do at times feel really tired but at least I don't have pain every time I eat something. I still have problems from time to time. I found out later by process of elimination that I also had an intolerance to dairy products. So I gave those up and found my body finally came back to a normal balance. I do drink lactaid milk and I eat rice cheese and lactaid cheese. Once on the diet, you find that there can be other things that irritate your system even if they are not gluten related. It's a process but worth paying attention to for the betterment of our health.

It was hard in the beginning and I was mislead at times on what I could eat. One time I ate spelt bread. The woman who worked at the health food store said that celiacs could eat this bread because it was processed differently. The first time I ate that bread I couldn't believe how good it tasted. However, the next time I ate it I became very sick, within and hour I was throwing up. Then I realized this was still a form of wheat and that my body had adapted so well to my new diet, that it couldn’t digest any forms of wheat ever again. That was a hard lesson for me, not to listen to anyone’s advice about food, ever again. I needed to educate myself and make my own decisions about what I should and shouldn’t be eating.

In the beginning of this transition, I was depressed about giving up so many foods that I loved. I was an avid baker and I loved making homemade goodies for my family and friends. But now that I’ve been on the diet for a significant amount of time, I am ok with things and just glad to know I am well.

I wrote my old physician a letter informing her of my newly found disease. I told her people are counting on her to really listen and do something other than telling them this is just the way you are. That was her statement to me the last time I saw her. I am tired naturally. NO WAY! We have to be our own advocates for good health.

The other thing that I felt was really difficult in the transition to this disease was educating family members. My family understood, but my but my husband’s family was not so accepting and thought I was making too big of deal out of nothing. This was very hurtful, but I had to do what was right for me! A couple years later the same people who thought I was being ridiculous had a friend who was diagnosed. Their whole perspective changed and they realized what I had was for real. So be patient with those who don't understand and if they are willing, educate them on the disease and the diet. If they are not willing to understand they don't care enough about you and it isn't worth worrying about!

Does this story sound similar to your or a family members? You might have celiac disease, find out now, take our celiac disease symptoms checklist.

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