My Celiac Story

I wasn’t positively diagnosed for Celiac Disease until after I was 50 years old, but I started a Gluten Free diet several years before I was ever tested.

My Mom was diagnosed when she was almost 70, and when our Dr. described some of the symptoms, well it was a given. I already had so many problems at a very early age I knew I had it too. So we decided I needed to be on a Gluten Free diet too, and later I did test positive for Celiac Disease.

My symptoms started very young. I was always a very picky eater, along with Anemia, vomiting, Acid Reflux, itching, unexplained rashes, stomach cramps and constipation. My immune system was a mess, I would catch anything that came along. I also had trouble taking vaccinations, I usually came down with what they were vaccinating me for.

The Dr.s were constantly giving me Iron shots, vitamins and Iron pills, etc. I was small for my age. ( Which was always extremely annoying for me!!!) I really wanted to be big enough and strong enough to do all of the exciting things that were always going through my head!

I had trouble focusing at times. Other times everything just clicked and I could keep it together. I made very good grades in school, but it didn’t come easy for me. Most of the time I was a calm level headed, very quiet kid. Other times I just couldn’t remember things, but because of that, I did learn some skills that I still use today. I drove my sister nuts with notes and lists, (that I taped all over our room,) to myself reminding me of things I needed to do, because I couldn’t remember. Sometimes I would cry, get mad and for really no reason at all.  I was either a ball of energy or so tired I could fall asleep without notice.  (That’s the times that usually got me more Iron shots)

The times that I had all that energy, I had no fear! I’m not saying I was a holy terror, but I sure could think of things to get into. That usually got me and my sister in trouble. At 4 and 5 years old I would climb all the way to the top of trees, until the limbs would be so thin they started to break. It still didn’t scare me. I even swan dived out of the top of one of those trees, with a rope in my teeth, I still have the missing teeth to proof it. That is only one incident! Believe me there were many many more!

 You may be wondering, what this has to do with Celiac Disease? I now know it has a lot to do with it. Food sensitivities can cause all kinds of problems in kids. Including extreme behaviors like I had. I did learn self-control though. I was a preacher’s kid, and doing flips in church was frowned up on.(I didn’t do it, I just thought about it.) So I learned to control my extreme behaviors. (Most of the time.) When I would get the Heebie-Geebies, the name I gave to my episodes when I could hardly hold myself down, I developed a skill in order to cope. I still have that habit today, and it annoys the life out of my husband! If I have to sit still for very long, I bounce my knee, to the point that sometimes if anyone is sitting beside me they could be bounced out of the chair.  I don’t realize when I do it, until someone punches me, or I start getting annoying looks from people around me.

I never had the extreme diarrhea that a lot of people with Celiac Disease have. I had constipation, and horrible Acid Reflux!!! I don’t ever remember a time that I didn’t have it. Then as I got older, and more damage was done my joints started to swell and I would have such over the top joint pain that it started to slow this wild child down. The Dr.s finally diagnosed me with Juvenile Rheumatoid Arthritis. This was probably a blessing in disguise though. The young Dr. that diagnosed the JRA put me on a diet that excluded most of the Gluten I was eating. I was never a bread eater, but I did love blue cheese and a lot of other inflammatory foods. He didn’t call it a Gluten Free diet, I don’t know if they even knew what that was, but it did help. Along with some very strong medications. Of course I was still getting Gluten in other things, and the word Gluten was never mentioned. The damage to my body was already done though. As I got older, I developed menstrual problems, ( and eventually infertility) and Thyroid Disease. Among other problems, all of which are related to the damage caused by undiagnosed Celiac Disease.

What I want everyone with kids to take away from my story is, if you have a kid with any of these problems.  A picky eater. A kid that can’t control themselves at times, has trouble focusing. May or may not have stomach issues, rashes. Extreme tiredness at times. Please don’t just shrug it off. Please, take them to get them tested for food sensitivities or Celiac Disease.  Don’t take them off of Gluten right away until you talk to a good Dr. that knows about Celiac or Gluten Sensitivity. They have to be eating gluten for at least 4-6 weeks for an accurate test.

Please pay attention to those Heebie-Geebies! This is miserable! I know now that it was something that I couldn’t control. I never have them anymore unless I get accidently Glutened, or am exposed to things I’m allergic to, MSG, Flax, codeine and some artificial food colors.  I have to carry an Epi pen with me at all times now because the extreme Acid Reflux caused so much damage to my throat, it’s caused Anaphylaxis.

This is the reason I’m telling my story. If your child does have food sensitivities, the damage it is doing to their little bodies can’t be seen. They can’t tell you what is going on. As an adult, I can now recognize the symptoms I had as a kid were caused by Celiac Disease and Food allergies. Please Please, don’t ignore these symptoms in your kids. Children can’t explain why they are acting out, but I’m telling you from experience why I did! Please use my story to help your kids!!!!!