Today, I'm thinking about the F.A.Q. for people with celiac disease. The list is pretty common. I field a few particular questions quite frequently.
-What happens if I get gluten?
-Is it any better now?
-How did I figure out what was going wrong? or How do they diagnose?
-What was it like before?
There are of course a litany of other questions, many of which annoy me, and many more very interesting ones that are just less common. Perhaps at some point I should do a "What not to say to a person with Celiac." Hehe. And actually, it might also be a helpful thing to do a "What I probably should say when I feel like panicking or flipping out about food," even though I'm still not particularly great at that latter point myself; I do remember when I was a good deal worse at it, so at least I've improved from baseline.
But anyway, today I'm going to look at that last question:
What was it like before?
I was 27 when I figured out I had Celiac disease, and my health had reached a state of collapse.
Just for clarity, I am indeed about to describe some detail of a digestive health crisis. If you'd rather not think about such things, now would be the time to go looking for something else. Here is my most popular recipe, for your distraction-enjoyment.
And if you're still with me, I think it's safe to assume you're genuinely curious, so let's move on.
When I think about it, I think I've always been like this. I just didn't know it. Looking at pictures and home video, my stomach was already protruding when I was a little girl, not like the other girls. I was a gawky skinny little kid, but with a stomach that stuck out. When I was 11 and fell rollerskating, the chiropractor was always telling me I had to stand up straight or it would hurt my lower back, but he didn't understand when I told him it hurt to stand up straight. Using my abdominal muscles was painful, so standing up straight wasn't really an option. My stomach was swollen all that time, but I didn't know any different. When I first started healing from Celiac, I suddenly started to feel healthier than I had when I remembered feeling when I was 4.
The first time I remember vomiting from eating very much of a particular food, I think I was 14, and I know it was popcorn. I had eaten most of the popcorn myself, and I threw up. That seemed normal enough at the time, I had eaten a lot of popcorn all at once. What made it unusual, what made this stand out to me, was that this occasion was only the 3rd time in my life that I had ever thrown up, and I wasn't sick. My stomach could really take a beating, and here it was rebelling strongly against something as simple as too much popcorn.
At the age of 22 I was "diagnosed" with irritable bowl syndrome. My PCP listened to my complaints of stomach discomfort and recurrent severe digestive upset, and without checking on anything, just told me I had irritable bowl syndrome. I cut a progression of foods from my diet, entirely, because it was clear I just couldn't handle them any more. Red potatoes were a definite recipe for being up vomiting all night, then later the rest of the kinds of potatoes caused either vomiting, or a sequence of painful constipation followed by terrible diarrhea. Popcorn still made me vomit, too.
By the time I was 24, foods that caused me problems were fitting into broad categories. Heavy starches would make me vomit. High fiber caused muscle spasms, painful cramping, and prolonged diarrhea. Fatty meats resulted in a prolonged burning sensation along with spasms during digestion that lasted nearly a day and was painful enough to prevent sleep. Dry, textured foods (such as nuts, popcorn, seeds, etc) caused all of the above, simultaneously. The list of foods I could eat comfortably was becoming very limited. I tried elimination of all of the 9 listed food allergens, just to see if anything would help. Medical advice continued to be: stop eating the foods that are causing you these problems. But now they were also saying: take a multi-vitamin, because you're really going to need it. Too bad that multivitamin just went straight through me completely undigested. I started crushing my multivitamins and putting them in orange juice.
Through all this, I was losing muscle mass and amassing fat. I was weak, perpetually exhausted, and since my body was largely unable to get the nutrients it needed to survive, it was doing the only thing it knew how to do under the circumstances, which was store as much fat for nutrient use as it could manage.
By age 25, digestion was no longer my only concern. I had my first asthma attack of my life that year. Then I had several more. I had developed late-onset allergic asthma.
As you might imagine, I was getting pretty desperate to try anything. I was 27, and on my way to visit a friend in Baltimore, when my travel companion said to me, "Have you ever heard of gluten?" I had not. I was willing to give anything a try.
Fortune saw fit that this same friend soon saw and snagged a free pamphlet in a Baltimore grocery store that had a big bold header that just said, "What is Gluten?" The trifold explained well, including the sneaky places that gluten can be found in ingredient lists, such as modified food starch, carmel color, and malt flavor.
The year was 2008. It was October. I brought that pamphlet home, and got started on the most detail oriented dietary change experiment I'd ever undertaken. Within a few days I knew I was finally on the right path, within a couple weeks I could hardly believe how good I felt. I gradually started reintroducing all the other foods I had cut, successfully. It was a rocky road of recovery, for sure. I do still have mild discomfort with potato starch and can't handle soy solids very well, but that's okay. As my intestines healed from the damage, slowly my setbacks became less severe. Now, five years later, my health is feeling pretty fantastic to me!
