Welcome to our discussion blog into the symptoms, diagnosis and treatment of Celiac Disease.
Wheat and celiac
Celiac disease goes by a number of different names these include celiac sprue, non-tropical sprue, endemic sprue, gluten enteropathy or gluten-sensitive enteropathy, and gluten intolerance.
To find out more about the condition please have a look at our previous Celiac awareness blog https://patienttalk.org/?p=349
The purpose of this blog is to provide you with an opportunity for you tell to share your Celiac disease journey with other readers. We hope it will give you an opportunity to share your knowledge and learn from others. .
Here are some questions we’d like you to think about but do feel free to talk about any part of your celiac story.
- What were your original symptoms?
- When did they start to appear and at what age?
- How easy was it to get a diagnosis? Was it a surprise to you?
- What kind of tests did you have?
- How easy is it to keep to your diet? Do you ever eat an gluten products?
- What do you think of the available information regarding the Celiac disease?
Please enter your answers in the comments box below.
Thanks very much for your help.
The more I remember about my early life, I had symptoms. I had diarrhea sometimes, but my mom assured me it was normal. My sister said that I looked pregnant long before I was fertile. I had many cavities and lost the enamel off of my teeth at 17. However, it was after a bout with mono that I had undeniable symptoms. My head grew foggy and I couldn’t shake the fatigue. My tummy would bloat up mysteriously. I woke up in the morning as exhausted as before going to bed. I did many things over the next 30 years to try to feel better again, but couldn’t.
I sought help from a chiropractor trained in Nutrition. She found I had an unhealthy curve in my ortho static blood pressure. My pressure would dive bomb when I stood up and stay down. This, I found was a dangerous situation. I took supplements which helped to normalize my blood pressure curve, but didn’t discover that I had celiac yet. I continued working with the chiropractor and taking the supplements for several years. A few summers back I lamented that in spite of the supplements I felt that every tissue in my body was irritated. My chiro asked if I still ate gluten and I said yes. I went home and researched it and decided that if I had this, it would explain a few things! I began a gluten free diet and went through 3 months of withdrawal/ cross contamination symptoms before I could get gluten out of my house. At that point I discovered I may have problems with rice, withdrew it, and went through foggy, fatigue, withdrawal again.
I didn’t feel I could ever eat gluten again, so I did a genetic test for celiac. I had no family history of celiac. I didn’t want to have celiac, but sure would be glad to know that I could feel better by just following a diet. My test results came by e-mail and I held my breath as I opened them. I won the genetic lottery, I had 2 copies of DQ2 and 2 copies of DQ8! I took these results to an MD. I described my reaction to the gluten free diet. We marveled at my belly that at the time looked 5 months pregnant. She told me that I had celiac disease and should never eat gluten again.
I used forums to help discover that other folks were struggling with this diagnosis just like I was. I felt my family could not relate to my situation. Now I have a grain free home. When I get near grain I react to it which is not necessarily a celiac symptoms. I have been unable to eat in kitchens that have gluten in them. Have reacted while drinking water someone inadvertently got a crumb in. The doctor told me that I eat at home. My extended family, at least a couple of significant ones think I am obsessed with health. It has been a huge struggle to follow the diet, but I don’t mind anymore.
One year ago I had blood tests to see what my nutrient levels were. I was low in several key nutrients even though I took supplements. I added digestive enzymes and adrenal support to my regime and retook the nutrient level tests. All but one of my levels had pulled up to normal and vitamin B to good! I feel so much better that I feel the work was worth it.
I eat meat, eggs, vegetables, and nuts which I make at home. Everything that can be washed is washed before I eat it. Much of my food I raise myself and that seems to be the safest for me. The one processed gluten free bar I tried left me fatigued for an entire week.
I hope to help others that feel fatigued or have other symptoms to discover whether they have celiac. Many tell me they will not follow the diet even if they do. I can’t imagine how they could see that when they have watched me struggle. I feel many people need to be instructed and warned about celiac, so they will understand.