Friday's Making the Switch Story is posting a day early. Please welcome Sarah—one inspiring and perservering young woman and mother who has finally found answers and a return to health. Thank you for sharing your story, Sarah!
The Road to a Celiac Diagnosis
Sarah | Age 31 | Santa Rosa, California USA
I thank God for the road that has led me to being diagnosed with Celiac disease. My diagnosis has changed my life completely. My body feels different—so free, so healthy—for the first time since I can remember. This has not been an easy journey to say the least. I share my story with you to encourage you to keep seeking for answers when you think you have been mis-diagnosed. I want to encourage you to do what it takes to get healthy and stay healthy.
Since I can remember, I have had digestive issues.
Let me start at the beginning. I have had digestive issues since I was a little girl. When I was at home eating homemade healthy meals, usually I was fine. But it seemed every time I was away from home on a mission trip or vacation I would get sick. I dealt with constipation, diarrhea, fatigue and I felt awful. I never knew why, I just dealt with it.
My doctors couldn’t figure it out.
During nursing school I was diagnosed with migraines and they got increasingly worse. When working at Children's Hospital in Oakland, often I would barely make it home before throwing up. I would collapse in bed with a severe migraine and fatigue. I lost so much weight and at one point was down to 100 pounds. I was fatigued—all the time—and was anemic. The doctors couldn’t figure it out. I was hospitalized in 2004 for two weeks with horrible stomach pain and non-stop throwing up. Every thing I ate made me sick. Since the doctors couldn't figure out the problem, they told me I was under too much stress and that that was the cause of my sickness. Some implied it was all in my head. I went to doctor after doctor for years for my fatigue. I had to nap for 2-4 hours EVERY day or I couldn't make it through the day. Most days by 10 a.m. I was so tired I could barely feed the kids and make it to nap time. I was irritable and snapped at them at times. I knew that food could make me feel better or worse, but couldn't figure out what food was making me feel so awful. Little did I know that wheat—which is in everything—was the culprit.
A chiropractor’s sage advice, unheeded.
Five years ago I started seeing an amazing chiropractor multiple times a month to help with my migraines. He kept encouraging me to get tested for a gluten intolerance. He was convinced that something was wrong with my body. He would adjust me and stop the the spasms. However, anything—two minutes of working out or lifting something—would send my muscles into horrible spasms again and back to him. I was not healing right and my chiropractor was concerned that I was not absorbing the nutrients my body needed so that it could heal itself.
Trust me! I didn't want to go on a gluten-free diet if I didn’t really need it. I didn't want to have something like that wrong with me. So I continued to it eat.
Still sick and tired—off to see the GI Doc.
Four months ago I called a GI doctor and set up an appointment. He summed it all up to be Irritable Bowel Syndrome and gave me some meds to take to feel better (note: many doctors make the “Irritable Bowel Syndrome” diagnosis when they don't know what it is. Many Celiacs receive this diagnosis before actually being correctly diagnosed). I had to ask him to test me for Celiac disease. He gave me a doubtful look, but ordered the blood test. I also discussed starting a gluten-free diet. He said that I could try it to see if it helped. He had no information on it. He told me if I could find a nutritionist, that he would refer me. He said, "I only deal with organs, not nutrition." Wow! I was kind of taken aback that a doctor who dealt with organs that absorb nutrients had no idea how to support people who needed help with nutrition. I was on my own.
The Celiac diagnosis—now what?
Two weeks later, I got the call,"You have Celiac disease. Call back in a month and let us know if you are feeling better." That was it! No further testing to make sure it was Celiac (you should have a small intestine biopsy done). No testing for nutritional deficiencies. So I turned to the internet and started doing my own research. I am so thankful that there is so much out there to support those with Celiac disease. I have a five-page typed list of things that have gluten in them that I have to stay away from. I got a list of tests to run (which I had to ask my doctor to do). I have read lots of articles regarding the research out there and many testimonials.
It was a scary world to be thrown into at first. It was daunting trying to fix gluten-free meals the whole family would enjoy. Trying to come up with snacks that I could have on hand while everyone else had cake or cookies. Little by little I am building an arsenal of resources and support. I now have a couple of gluten-free cookbooks. I have emails from friends and family that have had to go on this diet. I have a list of restaurants that have things that are safe for me to eat. Life is getting easier and so much better all the time.
I am healing and feel fantastic!
It is amazing the change I feel in my body. My head is clear. I don't feel "foggy brained.” I have tons of energy. My stomach pains, nausea, diarrhea, bloating and loud stomach noises are gone! My muscles feel different. They are relaxed and healing well. The migraines are gone. A rash I had for seven years is gone. My irritability is gone. I feel peaceful now. My whole body is different!! I thank God for my diagnosis and for taking me on this journey.
The pantry purge.
Little by little I am figuring out this whole thing. I started by finding all the things that I could naturally eat that didn't have gluten in them. We ate a lot of chicken, rice, veggies, fruit and tacos for a while. Then I found some yummy gluten-free bread, bagels and flour. After my sweet husband made a delicious roast using ingredients that contained gluten (by accident), I decided that we needed to make a gluten-free kitchen. I spent an entire afternoon reading every ingredient on every product in my kitchen. I found out that the non-stick spray I used on my gluten-free cookies had wheat in it. Whoops! I pulled out the soy sauce, bread crumbs, all soups, crackers, pasta, graham cracker crumbs, some spaghetti sauce, some spices, onion soup mix and a bunch more products. I ended up giving almost all of it away. I have a small shelf in the laundry room that contains gluten-containing food for my husband and girls. All gluten flour is out of our house for good.
I had to wipe down everything in the kitchen that had wheat flour on it (the mixer, all the drawers, all cooking utensils). Then I had to go shopping and get my own butter dish (the other one is contaminated with wheat bread crumbs), cutting boards, squeeze bottle for mayo. I had to get new baking dishes that will bake gluten-free food better. Slowly I am stocking gluten-free ingredients in my kitchen. I never in a million years thought that I would have agave nectar, xanthan gum, tapioca flour, and a bunch of other stuff like that in my kitchen.
Make the switch little by little.
The best advice I have for someone making a lifestyle change like going gluten-free or switching to whole foods is to take it slow. Each week pick something to change. I first started by cooking gluten-free and finding a few new things to eat. Then I made my kitchen gluten-free. A few weeks later I got the gluten-free kitchen things I needed (cutting board, toaster, etc). Then I signed up for a Celiac support group. Each week find something else to do that will help you get healthy. It can be an exciting adventure for you and your family.
Follow our everyday gluten-free life at The New Kuhner Family.
Encouragement for the Newly Diagnosed
There are a couple of links I would like to close with that have encouraged me again this week.
Gluten Free 101 over at Adventures of a Gluten-Free Mom
Grieving Gluten over at Gluten-Free Easily
Making the Switch, spotlights everyday people journeying on to better health and well-being by choosing pure food over processed. For some, it has been gradual. For others it was a complete about-face.
Putting the modified diet focus of this blog aside, Making the Switch is open to all. The point being to bring personal stories to light that encourage young and old to get back into the kitchen to cook real food. As Jamie Oliver puts it, “make only a few small changes and magical things will happen.” Whether it’s weight loss, improvements in a child's behavior or the regaining of health, magical things will happen.
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