Symptoms

     In recent years, there has been quite a lot of research on Celiac Disease, and how to diagnose and manage it. For a while, Non Celiac Gluten Sensitivity was not well understood, and some even doubted that it existed at all.
     Now Non Celiac Gluten Sensitivity has been recognized as a condition in its own right. There are blood tests that can indicate whether a person is likely to be suffering from it. The symptoms apparently are somewhat different from Celiac Disease. Then again, there is not a whole lot of agreement as to what the symptoms of Celiac Disease are, so that is not a lot of help.
     In my case, the symptoms that led to my NCGS diagnosis were not digestive at all. I was chronically tired and feeling depressed; my muscles and joints hurt all the time; I seemed to be able to work for a few hours and then just "hit the wall" and be almost unable to keep my eyes open.
     A blood test revealed that I was suffering from NCGS. My doctor said it was not necessary to test for Celiac Disease (a fairly complicated and presumably expensive process) since the treatment was exactly the same -- avoid all gluten, forever. I immediately started working on that. And it is still a work in progress, as from time to time I discover something new.
     My doctor has since retired, and I have found a new one. She has done blood tests too, and confirms that I have NCGS and I do not have CD.
     Although NCGS has been recognized as a distinct "thing", the literature -- and presumably the medical community -- continues to view it as a less-serious condition.
     I recently had another exposure to gluten -- yes, again, despite my being careful to the point of being compulsive. Or obsessive. Whatever. This time I apparently ingested quite a bit (I think it was in the form of pancake batter added to scrambled eggs, in a Miami diner) and was sick for weeks. A major symptom this time was gastric distress, along with muscle and joint pain and fatigue and depression and brain fog. I required a diet of clear fluids for a while, and then a "soft foods diet" with severe restrictions on dietary fibre. Three months from exposure I am still gradually re-introducing normal foods.
      My reaction has been so extreme that I am beginning to wonder where I truly fit on the spectrum of celiac and non-celiac disorders. Just because I have NCGS, does that mean that I DO NOT have some other condition going on at the same time? Diverticulitis? IBS? Does the Celiac Disease blood test give a true picture if the patient is NOT consuming gluten at the time of the test? Or is the problem simply that there is STILL not enough known about symptoms?
     Since every cloud has a silver lining, I am now quite familiar with the "soft foods diet", the one that is appropriate for recovering from intestinal surgery (not the one for sore teeth). The mainstay of every meal is mashed boiled potatoes. I make soup with potato, chicken breast and carrot. I have been able to add celery and onion to my soup lately, and that is nearly normal. In restaurants, I can eat a baked potato (if the menu does not include gluten-free pasta or rice) and a plain grilled chicken breast. That is almost normal. I avoid dairy for the most part (except for an occasional bit of butter or a bit of real cheese, not processed). Gradually moving away from the soft foods, I can now eat a lean grilled steak. Woo-hoo! Each week I try a new fruit, one without seeds. Sometimes I cannot tolerate it, and I need to rest before I try something else. So far I can eat bananas (which I don't like), cherries (which I love) and applesauce (meh). I have discovered a really nice gluten-free bread from Canyon Bake House, and I can eat a peanut butter substitute called "Wow Butter". To me, this feels like a very generous variety of foods!
     And so The Gluten Wars continue.