This disease can be a total lifestyle and life changing event.
I have been living with Celiac’s Disease for more than 5 years. I grew up with many stomach problems and was diagnosed as having Irritable Bowel at the age of 21. My friends would tease me and say I have the stomach of a 70 year old woman.
I could not eat anything!
I went through many doctors that just told me the same thing. Cut back on fatty foods and eliminate the foods that make you sick. Over a period of 8 years I was a frequent visitor in the ER. I had over 5 visits a year some of them only weeks apart. It wasn’t until I started reading online that something started to click and I thought I had figured out what was going on. I went to visit a friend in Colorado and they had this amazing store called Whole Foods. I had never seen anything like it before. To say the least, I came home with a suitcase full of GF foods and I had been gluten free for over a week.
The great test debate began…
I was later tested for Celiac’s Disease and the blood test came back positive. I also underwent the Biopsy and that actually came back negative. I later found out that being GF for over 6 months can actually heal your insides and therefore cause a false negative. I was quite the slacker when I got a negative result. BOY DID I GET SICK! I learned the hard way that this is a diet that cannot be a feel like it when I wanna thing. The damage is being done even if I don’t get sick.
It broke my heart that my daughter was sick at school everyday but she refused to call home.
She did not want to disrupt me while I was at college. We drove almost four hours to a children’s hospital for them to tell us nothing was wrong. She was tested and it came back negative. This was before they would test for DNA markers. We are living GF because I could not find a doctor that could explain why my daughter was getting massive stomach aches on a daily basis. I tried her on just a wheat free diet and that did work for a while. Recently, the stomach aches started coming back and we decided to have her go completely GF.
I cannot remember the last time she has had a stomache ache after going GF. I tell her every time she struggles with being GF that it is her choice. She looks at me with her big sad eyes and tells me she doesn’t want any more stomach aches. She is 11 years old so I feel it is important for her to be able to tell others she can’t have certain things. I am not always with her to explain.
My daughter is an amazing cook and can make a killer Shrimp Scampi. We have worked on many, many recipes. Many of us with Celiac’s Disease struggle with cooking once we are diagnosed. There are so many resources available now compared to what there used to be even 5 years ago. Children can be especially hard to please. Definately if they know what the real thing tastes like. We have tried so many recipes and they have been complete flops. But we are getting better and things are getting to be easier. My daughters just made a batch of chocolate chip cookies that went completly flat. Some of the dough was saved and later when I had a craving I tried some.
To my suprise it tasted like the real cookie dough you can get at the store. So it was horrible for cookies but excellent for cookie dough. My family is big on the dough anyways. I think they like it better than the warm out of the oven kind of cookies. We will continue to experiment until we can replace everything we have ever tried with an excellent GF substitue. I don’t want any of my children to grow up feeling like they are living without real food.




I'm so glad this disease is better known. I hope it will help others to find out sooner that they have Celiac's Disease than later. I look forward to the resources you'll share about making yummy food that fits this strict diet!
Hi Brenda! Thank you for sharing your story!
Wow Brenda thank you for that info! I have heard of Celiac disease before when I was searching the forums @ wrongdiagnosis.com. I think it often goes undiagnosed for quite awhile.
Wow to go that long with out knowing what is wrong. It's great to hear your positiveness on being Gluten-Free too. I really am looking to hear more about this as I have been thinking of going Gluten-Free with my autistic son. I have heard many good things about Gluten-Free.
I have quite a few friends who have children that have autism or ADHD and they have all seen amazing results. I plan on writing some of my blogs on amazing kid friendly recipes that would work great for you. I have a nephew who has autism so I hold this subject very close to my heart. If you decide to make the switch you have a direct contact for life right here!
You are correct. Many times it is undiagnosed. I am one of those people who are not underweight from the disease so most Drs would think I don’t have it just by glancing at me. If only they knew the pain and suffering that is not displayed on the outside. I almost get excited when someone tells me they have been diagnosed. Not because I want others to have this disease but because in the end that person is so much better off. Usually it is an end to years of suffering. RELIEF!
We'll have to check to see if we need to change our diet now. Thanks for sharing this information.
We'll have to check to see if we need to change our diet now. Thanks for sharing this information.