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.
    

One More Thing

It seems that as I get close to having one allergy or sensitivity under control, something else pops up. It's  always "one more thing". Proponents of clean eating and the paleo lifestyle suggest that this is due to the preponderance of chemical additives in our modern diet. I don't  know. Maybe that is the case.

Each time I think I have found a suitable gluten-free substitute for a food I used to eat -- and now cannot eat -- it seems like there is still something wrong with it. Like bread. Most gluten-free breads are long on corn starch and short on nutrients. I found a nice brown whole grain bread at Costco.  I don't usually eat a lot of bread but toast is nice now and then. A few days after I got the new bread I found I was suffering from nausea and indigestion. It took a while to figure out what it might be -- symptoms were kinda flu-like -- and by the time I solved the problem I had a major digestive disturbance. Back to the drawing board.

The enemy appears, disguised as a trusted friend.

THE GLUTEN WARS

The enemy appears, disguised as a trusted friend.  Sept. 21, 2015

     When I began to blog, my main interest was to share my weight loss journey (s) in the hope that I could help somebody else. Pretty simple.

     My focus has changed. So has my weight. Since being diagnosed as “gluten sensitive” or in other words “gluten intolerant”, although not celiac, I have had to radically change the way I eat. My doctor directed me to the Internet, where I would find “lots of information”. Either he neglected to tell me that there was also lots of MIS-information, or I did not hear him. I have read a few dozen books on the subject of “eating gluten free”. The cheapest ones are the ones that are the least useful, or the most harmful, depending on how you look at it. My mom always said, “You get what you pay for.” True.

     Internet websites, blogs, books, magazines – what is a person to believe? And how does eating gluten-free fit in with eating healthy foods and maintaining (wait – too late!) or achieving a healthy weight? AND how does a person manage to NOT feel totally deprived of all socialization with humans that are not eating gluten-free? Or healthy. That is my focus now.

     I think that the best book I have read on celiac disease and eating gluten-free is Jennifer’s Way by Jennifer Esposito.

     It would make sense to start at the beginning, but that would take too long. Here is where I am now. I have been glutened! AGAIN! Despite my near-constant vigilance, I made a mistake the day before yesterday and was sick yesterday, and am sick today, and expect to be sick for a week to ten days, and then to have a “sensitive stomach” for another couple of weeks. SIGH.  *SWEAR*.

     This time, my husband tried to warn me by saying, “Are you sure you should be eating that?”  (“That” being a handful of delightful chocolate chips, which my daughter-in-law had provided to my delightful grandchildren.) I mindlessly grabbed and ate some. He tried to warn me. I said, “Of course I can eat these. I eat them all the time.”  True. In Miami. When the package says “gluten free”.  Now I am not in Miami and the package is not there at all and the chips are likely from Bulk Barn and could not say “gluten free” if they tried. What an idiot! Just because they look like something I eat from time to time, I automatically assume that they are the same. NO, no, no. And that is the subject of today’s blog:  How eating gluten-free products ruins you for the real world. I suppose people who have better impulse control than I do may not encounter this problem very often.

     When I began my war against gluten, I bought various gluten-free flours and followed various gluten-free recipes in an effort to make and eat food that looked and tasted like the “real” foods that I loved, and yet would not make me sick. The upshot was that, as a result of eating various flours and other things high in carbs and low in nutrition and fibre, I began to gain weight. The more I tried to “eat right”, the worse it got. I tried going carb-free. So far, that has not worked out well for me. Years ago, it was hard to find anything gluten-free in a restaurant; now there are many options that claim to be gluten-free. I don’t know if they are or not, but let’s assume for now that they are. Sometimes they are just made from the same nasty flours that I should be avoiding, as in “gluten free pasta”. I guess “pasta” is just another word for “weight gain”.

    I cannot seem to maintain two containers of every livin’ thing in my cupboards, one for me and one for everyone else, so I spent a LOT of time discarding everything in my house that was not gluten-free. Then somebody brought some salad dressing, and left it in my fridge, and I ate it. It was not gluten free. I was sick. I felt I should not have to read every label every time I eat something, especially in my own gluten-free home. Wrong again.  My husband buys things – for his own consumption – that are not gluten-free. They look the same. They get put in the same place. But they are not gluten-free. My daughter-in-law buys gluten-free products when I visit, but since she herself eats “gluten-reduced” out of choice, a lot of her things are not gluten-free. Of course the children do not eat gluten-free. And I have tried so hard to find treats for myself that are gluten-free. BUT impulsively I might eat without thinking. Well, I did. This is a warning to those of you who must be gluten-free, to maintain eternal vigilance. And it is a stark reminder to those of you who think that eating gluten-free can’t be that hard – it IS that hard!

     Now that I have been glutened, and as part and parcel of my spectrum of symptoms, I am feeling depressed and hopeless. I will never be able to go anywhere again or go out with friends or have any fun or eat anything. At all. And I will starve to death without ever losing weight and be very sorry for myself (wait – I am already doing that part!) boo-hoo.

     In a few days my mood will improve, and I will go back to living a quasi-normal life with renewed resolve to be more careful. It seems that for a few weeks after one of these episodes  I need to eat a bland diet, until the inflammation in my innards heals; so far I have not been able to find a bland diet that does not pack on extra pounds at every meal. Once I can tolerate high fibre foods again, and have enough energy to do more than type a rant, I can resume my weight-loss journey.

     And that is today’s bulletin from The Gluten Wars.