20 years gluten-free!

It has been 20 years since I was diagnosed with Celiac disease and that I have been eating a gluten-free diet!  I can hardly believe that it's been that long!

I always seemed to have some kind of mysterious illness, even as a child, that the doctors could never diagnose properly, or at all.  I would hear things like, "It's {this}--take this medicine," or "You need to reduce your stress level," or "It's all in your head!"  My all-time favorite was the doctor who told me, when I was at my most toxic, "You need to triple your wheat fiber intake!"  That advice almost killed me!

I finally got a doctor to listen to me and he agreed to run a panel of blood tests, although I'm pretty sure he didn't believe that there was anything wrong with me; he just wanted to shut me up and get me out of his office.  Well, 3 or 4 days later he called me and was so apologetic!  The first words out of his mouth were, "You really are sick!"  Then, he went on to tell me that there was not a single system in my body that was functioning properly, that my iron level was actually below zero, and that he couldn't believe that I could even stand, much less carry on my busy lifestyle.  Even though he knew I was sick, he had no idea what was wrong and no way to find out because there were no specialists at our little military hospital there.  We were living in Italy at the time and he wanted to have the military fly me back to the States immediately and put me in the hospital.  When I asked him if I was going to die from it, he said that he didn't think so.  Well, I had 2 months left in Italy and I didn't want to leave early or go without my family, so I opted to stay.  He buffed me up with some iron and B supplements and wished me well, after scheduling for me to be admitted to the hospital in the States the day after we arrived back.





Four months of nasty testing followed my first admission to the hospital.  I had a wonderful gastroenterologist who swore that we'd get to the bottom of things.  So, he started testing, and testing, and testing!  Every test came back negative, but I continued to get sicker and sicker and gain weight faster and faster, even though I was rarely eating and was spending all day and night on the toilet with terrible diarrhea. He finally told me that he had tested for everything he could think of, except for one thing, but he was sure it wasn't that since I didn't have any of the "proper" presenting symptoms--I should have been losing weight, not gaining and there were lots of other things that just didn't fit the "mold."  But, in the interest of being completely thorough, he wanted to do one final test (this is after I'd been scoped at least a half dozen times from both ends, had CT scans, and MRI's, and had more blood drawn than a dozen vampires would use!).  He said he was hesitant to do the test because of the risk involved, but he felt like we just had to find out and the only thing left was to do a small bowel biopsy.  He said that the danger lay in having to go so deeply into my small bowel and then, clipping out a section for testing.  After consulting with my husband, we agreed that we had to do the test.

I was pretty scared that day!  I had been through breast cancer prior to all of this and I don't think that scared me as much as this test did.  But, I really needed some answers, if there were any to be found.  I knew there was something wrong and my husband knew there was something wrong, but we just didn't know what it was.  The small bowel biopsy went perfectly and the doctor was sitting at my bedside when I woke up.  He told me that he couldn't believe it, but I had the worst case of Celiac disease he had ever seen! (That was the thing he was so sure I couldn't possibly have)!  He said that my small bowel looked like the Sahara desert and he wasn't sure if even eating gluten-free would help me, but that I had to try.  

Finally!!  I had an answer!  I didn't understand anything about what was going on, but I learned pretty quick.  It seems pretty simple now, but you have to remember that we're talking about 20 years ago! No one had heard of gluten-free back then.  The dietician who worked at the hospital had absolutely no idea what Celiac was or what gluten-free meant and most of the information she gave me was wrong (which I didn't find out for many, many years)!  Most of the doctors I came in contact with honestly had no idea what to do either.  Shortly after I was diagnosed, they determined that my iron level was so dangerously low that they had to do something because the pills and shots just weren't making any difference at all.  So, they decided to put me in the hospital and do a full-body iron infusion via IV.  During the time that I was being "filled up", the chief of staff at the military hospital rotated the doctors through my room and had me give them a tutorial on what I had and what I did to treat it!  When my lunch came, there was not a single thing on that tray that I could eat, even though I had specifically written down what gluten-free entailed.  It was a whole different world back then!  




But, I was so relieved to finally have an answer and to have some validation that I wasn't really crazy.  I have not intentionally eaten any gluten in 20 years, not even once since the day of my diagnosis.  I have had unintentional contamination and have suffered because of it, but I have been 100% gluten-free.  Interestingly, every GI doc that I've seen in the last 20 years has told me that I was their only patient who actually followed the diet!  I can't imagine purposefully eating something with gluten in it when I know the consequences.  I am a very sensitive Celiac and even a slight cross-contamination causes weeks of very nasty symptoms. 

The difference between a food allergy and Celiac disease is enormous!  With a food allergy to gluten, you're going to be sick for a few hours and really wish you hadn't eaten whatever it was, but you will recover fairly quickly and there will be no long-term damage to your system.  Celiac disease is an auto-immune disease and every time you ingest gluten, you do irreparable damage to your intestinal system.  My doctor wasn't surprised at all that I didn't heal up, even though I was eating gluten-free because he determined that I had probably been an "active" Celiac since I was a small child and the damage done was just not going to be fixable.  Many people ask me why I even bother eating gluten-free if that's the case?  And my answer is this:  I can't reverse the damage done, but I CAN prevent further damage and that's worth it to me! Plus, I live such a happier, healthier life when I'm not eating gluten.

I would love to eat a Krispy Kreme donut, or grab a slice of pizza at the local place, or never have to worry about what I eat at the monthly church potluck, but I can't--no, let me rephrase that--I won't.  I am committed to being gluten-free because I want to avoid as much damage and pain as possible and that means I have to give up some things, so I do.  

If you, or someone you love, has Celiac disease, I hope you'll do everything you can to maintain a gluten-free lifestyle!  I am always happy to answer questions, so don't hesitate to contact me.  And, I'll do my best to keep sharing wonderful, gluten-free recipes with you, because I have had my share of recipes that were written by people who obviously never actually have to eat gluten-free!  My recipes are tried, true, and tested and the majority of people who eat them never have any idea that they're eating gluten-free--that was my goal 20 years ago and I'm glad that I've achieved it :)