First of all, it still seems really weird to say I have “Celiac Disease.” It still seems completely intangible that I have such a serious disease, despite all the symptoms that are gone now, how much I feel better and how awful I feel if I get even the tiniest bit of gluten. My hopes for writing this post is that it helps someone out there ask the right questions and get diagnosed easier and faster than I did.
The Book That Changed My Life and our Family
In March of 2011, after having 3 kids, like most mom’s out there, I wanted to get back, or close to, my pre-pregnancy weight. I had gotten there before getting pregnant with our 3rd child, but this time it was even harder so I looked for something new while trying not to use just a ‘fad’ diet. After researching a lot on the Internet, I kept running across the same theme. That it’s easy to lose weight if you control your insulin and the easiest way to do that is to control your carbs. I don’t even remember how, but I stumbled upon the book The Primal Blueprint by Mark Sisson. I had just gotten a Kindle for Christmas so I was very much into reading books again so I thought I’d give it a try.
I found that this book was so easy to read and really spoke to my Engineering mind on why you should control your insulin levels, why you should avoid processed foods, why you should exercise regularly, etc.
I was able to quickly adapt the guidelines in the book and I immediately stopped eating so many processed foods. In particular, I stopped eating a lot of processed carbohydrates. After a few weeks of eating less carbs and less processed foods in general, I noticed my constant Allergies were getting better, my Asthma was also getting better. I was immediately losing about 1-3 pounds a week. About a month later, I was able to start weaning myself off of my Allergy meds and Asthma meds! This was amazing since I was on over $400 worth of meds a month across 4 different types of meds!
Mark’s philosophy is very realistic. He realizes that you can’t be perfect 100% of the time when eating. He mentions many times that as long as you eat properly 80% of the time or more, you will get a lot of benefits of not eating processed foods. It also is good for you mentally to not have to worry 100% of the time on what you eat. For example if you go to a party, he doesn’t want you to stress about what you eat, but still eat reasonably. As long as you follow the 80%+ rule you will see great benefits.
So what I did was every Friday I’d treat myself to a local Italian sandwich shop. I’d get my favorite sandwich for lunch every Friday. The more and more I ate properly the other days of the week, the more it was apparent that I felt terrible after lunch on Fridays and I slept almost all weekend and general felt like I had the flu, including ‘bathroom issues’ all weekend. My sinuses would also clog up as well all weekend.
This combined with any other time I had something with wheat in it, I had the same issues. It became apparent that every time I ate wheat, I felt really sick. As I naturally do, I started researching what might cause this. I don’t even remember specifically coming across Celiac disease but I did and started to get suspicious. I had never noticed issues when eating wheat before, but I had never been not eating wheat. I had it regularly, every day, sometimes multiple times a day.
Trying to get a Diagnosis the First Time
A few months after I had stopped eating wheat, I brought this to my Doctor and she had me get a blood test for gluten intolerance. Unfortunately, I was probably 90% gluten free at this point and my blood tests came back negative. I still suspected something as I just knew how badly I felt when I ate wheat. She suggested if it did bother me, that I naturally shouldn’t eat it, but she didn’t think I had Celiac’s disease since my tests were negative.
A few months later I visited my Allergist and let him know that I was able to go off all Allergy and Asthma medicines. His breathing tests confirmed it. We decided to do food allergy testing and everything came back negative. He decided that I had an intolerance to wheat.
Getting Fed up with Still getting Sick
Probably 6 months later after my food allergy testing, I was getting fed up with still getting sick and not sure why since I was avoiding all wheat. I decided one Sunday at lunch in January of 2012 to eat Barley soup. I was determined to figure out if it was wheat, or all gluten. After several bites, my stomach started hurting, I kept eating though just in case I was imagining it. I stopped before I ate 1/2 a bowl. I just couldn’t eat any more.
I seemed OK at first other than my stomach not feeling well. A few hours later I started throwing up and having violent diarrhea. (Sorry if that’s TMI!) I was sick for about 3 days after this. It took what seemed like forever to stop feeling bad.
I considered this might be a one time thing, or that I might have just been getting sick already. But I decided to start eating everything gluten free just incase. I had less and less ‘random’ issues once going completely gluten free. Every time I had digestive issues, I would go back and look at what I ate and the ingredients and find that they had a hidden gluten in them or they had gluten and I didn’t know it. One weekend it was simply mini Milky-ways! Who would have thought that they have malt flavoring in them!
How it Changed our Family
Since I was finding I was so sensitive to gluten, even a tiny crumb of bread would set me off, I discussed this with the children’s pediatrician. We decided that it made sense to get blood tests for all three of them since gluten sensitivity and Celiac Disease runs in families. To our surprise in November 2012, our oldest tested positive for gluten antibodies! Keep in mind the kids really only ate gluten at Lunch at this point since breakfast and dinner was gluten free usually because of me. He did not have positive ‘anti-self’ antibodies, so it wasn’t clear yet if he had Celiac Disease or not. Apparently Children’s immune systems are not mature enough yet sometimes to start producing the anti-self antibodies (which is a higher indication of Celiac Disease, rather than just gluten intolerance).
Having him test positive for gluten antibodies helped diagnose me further since that showed it may run in the family. In December 2012, we went to a Gastroenterologist who diagnosed me with Celiac Disease simply from my symptoms alone. He wanted to do an endoscope test on our oldest, but we had to put him back on gluten first. He had been off of it for about 1 month at this point. We found though that every time he ate a small amount of gluten, that he had ‘bathroom’ issues as well! He previously had no noticeable symptoms before.
We decided as a family that since he had symptoms when eating it, to not put him through that procedure since it was apparent that gluten was making him sick as well.
I was so thankful that I figured out my issues so we could get our oldest diagnosed a lot earlier in life! Now we are both healing and both feeling SO much better! Read below about our symptoms and why our home is now gluten free!