"We teach best what we most need to learn." Richard Bach, Illusions
. I guess that is the SHORT short version of why I'm doing this.
I know it may puzzle people who know me that I am spending my free time on this gluten free thing. And before I got diagnosed with celiac, I would have thought so too. I remember a conversation with our pediatrician 9 years ago when talking with her about our older son's mild reflux issues. She mentioned celiac and I made a face and said something enlightened like, "Isn't that pretty weird and rare?" She said no, not that rare (she ignored the "weird" comment), but because we didn't have any other indications that he might have gluten issues, we didn't pursue testing. [My son, now 10, and I are not biologically related and he has no symptoms of celiac, FYI.]
And is my way, once I got diagnosed, I began a steep learning curve on how to live gluten free and about the disease itself. What I found is that it's a way bigger deal than most people think it is, and it looks like it's only going to get bigger. (More about that in a minute if you want a deeper dive.) But what's the big deal anyway? So you have an upset stomach, so what? Well, for one, "upset stomach" doesn't begin to approach the severity and host of symptoms that some people experience. For two, untreated celiac can open the door to a whole host of conditions and illnesses, including cancer, which can make your life miserable and shorter. That's the big deal. If you have celiac, go gluten free, feel better, live longer. If you have any reason to suspect you might have celiac, talk to your doctor and ask to have the antibody tests for celiac that may indicate a need for further testing. Go here to see a symptoms checklist
Before I got the celiac diagnosis, I was interested in helping people adopt strategies that would increase their general level of happiness. Since diagnosis, I've met and interacted with lots of people with celiac in person and in the cyberworld who could really use some techniques to get happier. This is supported by research that indicates that people with celiac, especially women, are more likely to be depressed and anxious.
So that's the point of my quest to help others be happy, healthy and gluten free. Keep reading if you want the numbers.
The number of people needing to live gluten-free is exploding. 1 in 133 Americans are diagnosed with celiac, many more are gluten-intolerant, their caretakers add to the ranks of people who assist with their meals, and many more people will be diagnosed in the near future as information about celiac and gluten intolerance increases testing and diagnosis.
In the United States, celiac disease is a genetic disease that affects at least 3 million people. That's 1 in 133 (for comparison, that's more than twice as many people as those who have Type I diabetes). But the number more than doubles if you have any symptoms (and there are LOTS of symptoms that you wouldn't necessarily connect to a GI issue), and the incidence of celiac is 6 times higher if you have a relative that has it. And what's more, researchers studying a population of both symptomatic and non-symptomatic people found that 60% of children and 41% of adults diagnosed during the study were asymptomatic, meaning that they would have had no physical reason to seek out testing. (Source: A multi-center study on the sero-prevalence of celiac disease in the United States among both at risk and not at risk groups. Fasano et. al., Archives of Internal Medicine. February 2003.) If you add in the number of people who are gluten intolerant (which means that they have symptoms but haven't tested positive for celiac) and the number goes up from there.
What's more, the time it takes for a symptomatic person to be diagnosed with celiac disease in the US is four years, increasing that person's risk of developing other autoimmune disorders, neurological problems, osteoporosis and even cancer. (Source: Characteristics of adult celiac disease in the USA: results of a national survey. Green, P.H. et.al. American Journal of Gastroenterology, 2001, 2006.)
And what about the Happy part of my equation? There are numerous studies that indicate that people, especially women, with celiac are more likely to be depressed and anxious than the general population even after they have gone gluten free. (Source: Future issue of Journal of Chronic Illness. Josh Smyth.; World J Gastroenterol. 2010 Jun 14;16(22):2780-7. Häuser W,; Janke KH,; Klump B,; Gregor M,; Hinz A.)
Here's to your good health and happiness!
This is my mom and dad and my grandparents in 1959. Since celiac is genetic, at least one person in this picture also carried the gene and may have suffered with a whole host of related symptoms for years. Fortunately awareness is on the rise, testing is getting better, and I'm confident that diagnosis and the time it takes to get a diagnosis will improve drastically in the years to come.
The warm and inviting Toté Bakery & Store -- much better than that which preceded it.
I was first diagnosed with anemia when I was twenty. I was trying to donate blood and win tickets to a Heart concert in 1984 at the tender age of 20. I'd organized the blood drives in high school and had donated at least three times prior, so I didn't expect there to be any problem. The blood drive lady sent me away and I didn't have the nerve to ask for a chance to win the Heart tickets anyway. (No worries, I've seen them, like, four times all together.) On the way back to Stillwater from Oklahoma City, my back really started hurting. In true college student fashion, I decided to deal with it when I got home by splitting a pizza and drinking beer with my roommates. The pain increased, and long story short, I went to the hospital and it turns out I had a kidney stone. To make an even longer story shorter, I ended up being hospitalized for a week because they didn't want to remove the kidney stone which wouldn't pass without ruling out leukemia as the cause of my anemia. One good thing about the bone marrow biopsy was that it really took my mind off of the discomfort of the kidney stone, at least for the 42 seconds of excruciating pain it caused. Fortunately I didn't have cancer, they gave me an iron infusion, surgically removed the kidney stone and sent me home with instructions about all kinds of crazy things to not eat to avoid another stone. And oh yeah, take some iron.
The anemia never really went away. Every new doctor, every physical exam, the answer was, oh yeah, and take some iron. It was when I switched to a terrific young female doctor that something changed. She said, after I had taken my iron faithfully for months, "You know, something's not right here and we need to get it figured out." She sent me to a hematologist, who connected my anemia to a recent bout of GI distress. It was he who first suggested that I might have celiac disease. Blood tests and one endoscopy and biopsy later and the celiac suspicion was confirmed. I've been on the gluten free diet for more than 18 months and I feel better in many ways, but inexplicably my anemia persists.
In the 28 years I've gotten used to being blamed for my anemia. Of course I was anemic when I was 20 -- I was a college student eating junk and drinking too much alcohol. Of course I was anemic through the 1990's and 2000's because I'm a vegetarian and what can I expect if I choose to not eat meat? Of course I'm anemic -- I'm a woman of reproductive age and I carelessly throw away copious amounts of blood every month. When I got the celiac diagnosis, I was both relieved to have an answer and infuriated that no one had suggested looking for a real cause until my new fabulous doctor and hematologist came along.
The gf diet has been life-changing, but so far it hasn't fixed my anemia. I've been going monthly for IV iron infusions, a two-hour treatment in a chemo ward with a nice view of Washington Square Park. I decided that this cannot be the long-term solution and that I don't want to spend any more years with a big medical shrug for an anwer regarding the cause of my anemia. The hematologist and I are certain my diet is sufficiently iron rich. So at my last appointment with my GI doc at the Celiac Center at Thomas Jefferson University Hospital, we decided to do another endoscopy (to see if I still have villious atrophy despite a strict gf diet) and a colonoscopy to see if there is some issue with my colon (I'd had a bout of colitis in 1987 -- at least that's what was diagnosed). Those procedures happened this morning, and I'll be happy to not go through that again, especially the prep, for another 10 years. Things looked good. I will call for biopsy results in a couple of weeks. Hopefully everything will come back normal. Which will leave me to continue to sleuth out the cause of my anemia. Or just continue to deal with it until menopause and see if it resolves then.
There were a couple of highlights to the day. One is that it is an absolutely gorgeous day out, and while I can't operate heavy machinery, I did get to operate a rake and a pitchfork in the garden. Another was that, though the experience is generally unpleasant, I have a loving spouse who rearranged her schedule to look after me and drive me around. And the third, a biggy, was a post-procedure side trip to Toté Bakery & Store
in the Italiam Market section of Philadelphia. Everyone should console themselves with gluten-free raisin challah warm from the oven after half a dozen medical professionals have colluded to drive a camera and other assorted equipment through the entire length of their alimentary canal after a day of no eating and an evening and night of -- ahem -- cleansing.
I went a little crazy at Toté
. In addition to the challah, I got two other kinds of gf bread (quinoa and teff), an onion roll, a piece of gf carrot cake, a couple of nutrition snack bars, and a jar of their special hot sauce. I got Jenn a thank you cannoli. The nice lady who helped me assured me that the bread freezes well, which is good, since I don't really need to eat a bunch of refined carbs non-stop -- it would be contrary to my weight management strategy -- but having them on hand for the occasional treat will be nice. I spent nearly $40, which is twice as much as my co-pay. I ate at least a third of the warm challah in the car on the way home. Worth every penny.
The Wall Street Journal ran this article
a few days ago. It reports on a recently published medical opinion paper that posits that the medical community should acknowledge three levels of gluten issues: 1) Allergy, 2) autoimmune disorders like celiac disease, and 3) gluten sensitivity in which neither an allergy or autoimmune disorder is detected, but in which individuals who go on a gf diet show an improvement in symptoms. Many doctors these days don't take the claim of gluten sensitivity from their patients very seriously. In my own case, the GI doc who did my upper endoscopy and biopsy was skeptical of my (and my hematologist's) suspicious that I had celiac, even in light of my positive antibody tests (frankly, he was a moron and I don't think he read my file, but that's another story. I have a much better GI doc now.) Needless to say, I think it's really important for more doctors to take diet and nutrition into account when addressing physical and mental challenges presented by their patients. I'd go so far as to say that they should look at diet and nutrition FIRST. I recently blogged about and attached a link to a TEDx Talks by Dr. Terry Wahls
in which through diet (a paleo diet, which is devoid of grains) she makes a remarkable recovery from debilitating symptoms of MS. I recently read an article
about a possible connection between gluten and ALS (aka Lou Gehrig's disease.) In my own life, I know people who have tested negative for allergies or celiac or who haven't been tested at all, but who have shown a complete abatement of symptoms when going gluten free.
Here's my friend Betty's story
. She discovered that gluten was behind her persistent cough. (Betty's the president of Guardian Nurses
-- truly you want GN in your corner if you are dealing with complicated or long-term health issues for yourself or a loved one.) Other people I know personally are benefiting from a GF diet without the benefit of a celiac or allergy diagnosis. A friend and co-worker who has persistent debilitating GI distress who tested negative for celiac feels fine when she adheres to a GF diet. The asthma of child of another co-worker and friend is much improved from following a GF diet. A dear relative of mine whose doctor was ill-equipped to pursue a definitive diagnosis cleared up many significant GI issues AND supported his fitness regimin by going gluten-free. One friend had Dermatitis Herpetiformis (a classic sign of celiac) but tested negative when biopsied, who has resolved her issues on the GF diet. How many people do you know that suffer from canker sores or rheumatoid arthritis or lupus or teeth enamel problems or fertility issues or a host of other problems who have no idea what the cause is and can't seem to get better?
I don't believe that all of our ills are caused by gluten. I do believe that as a society we regularly eat things that are either not healthy or which have been so genetically engineered over time as to make them unrecognizable as food to our systems, confusing our natural defense mechanisms and setting off a chain reaction within our bodies from which we get sick.
I strongly believe that each of us needs to take responsibility for our own health and well-being. I try to avoid preaching. I do believe that if a person gets a diagnosis that confirms that damage is being done to the body by eating gluten that they are more likely to adhere to a strict GF diet and improve not only their quality of life NOW but decreasing the likelihood of related more serious health issues later. But for those who haven't tested positive, don't buy it if your doctor says that gluten isn't the issue. Trust your intuition. Listen to your body. Keep looking for the answer. It's your life and you should feel as good as you possibly can to make the most of it.
I have anemia. My primary phsyician sent me to a hematologist after I religiously took iron supplements for months with no improvement. It was my hematologist who put the various pieces together and tested for celiac disease. Turns out he was right.
Enter the gf diet as of September 2010. I feel better. I have more energy.Improved GI quality of life. No more canker sores. And yet, my anemia persists. Maybe the vast quantities of dark green leafy veggies aren't enough to keep up with demand. Maybe my heavy periods are to blame. My celiac antibody tests have come back normal, and all signs indicate that my gut has healed. For the time being, I'm going in monthly for the two-hour iron transfusion process. I'd rather this not be the long-term solution. I see my celiac doc next week, so I plan to explore it more then.
In the meantime, I recall that I have tested low on B12 and folate, which is completely understandable given my vegetarian and enriched bread-free life. While my anemia is of the iron deficiency type, I don't really know how it is distinguished from B12 deficiency anemia or folate deficiency anemia. These are clearly questions for my doctor. But, in the meantime, I figure it can't hurt me to try to boost my dietary sources of B vitamins and folate. Which brings me to the topic of nutritional yeast, which is rich in both plus tons of other good stuff. Seems like a virtual treasure trove of health all in a weird flakey substance.
The only way I knew how to use it is to sprinkle it on popcorn. A serving of the stuff is 3 TABLESPOONS. Since I eat popcorn maybe once every 6 weeks and I would practically have to bury it in nutritional yeast, I tried adding it to my usual diet of soups and stews. I quickly learned that it has a distinct enough taste that it needs to be treated as a primary flavor, not as something I sneak into the pot.
So I googled it. The big take-away there was to use it as a replacement for parmesan cheese, which I eat even less than I do popcorn. More research and ideas were necessary.
The obvious place to turn was the celiac listserv, which is a huge list populated by real people with real experience. I got a number of replies, some with actual recipes, and some with links to most excellent websites by gluten-free folks who clearly spend a lot more time in the kitchen than I do. Here are some of the suggestions, recipes and links.
Gravy: I got a couple of suggestions and links for gravy. I'm not much of a gravy eater, but we are in the holiday season when gravy seems to live large. Here's one recipe:
Start with a rice flour roux, add similar quantity of yeast as flour, then milk (or soy or coconut milk for the vegans.) Adding a bit of onion and garlic to the fat used in the roux is good, also a splash of GF tamari or amino acids enriches the flavor if you like those seasonings. Serve with steamed veggies and rice, or as gravy for
And here's a marinara sauce enhancement recipe: 1/2 cup marinara, 1 TBSP Almond Butter, 1 TBSP flax seed meal & 1 TBSP nutritional yeast.
Wendy Gregory Kaho of celiacsinthehouse.com
suggested sprinkling it on kale chips and she recently reviewed Jules Shepard's cookbook, Free For All, which boasts a gf quiche that uses nutritional yeast as a primary ingredient.
And in addition to celiacsinthehouse.com
, here are some additional recipes and great websites I'm glad I got introduced to:http://beyondriceandtofu.com/2010/04/18/recipe-review-double-bean-pasta-with-tomatoes/http://www.bookofyum.com/blog/gluten-free-vegan-breakfast-tofu-saute-with-nutritional-yeast-8192.html
Sage gravy, cauliflower gratin, dips, etc: http://toyourhealthnutrition.blogspot.com
In the end, I know I need to do some experimenting. Since my usual cooking M.O. is to make a big pot of something on the weekend and eat it for a number of dinners the coming week, I need to figure out which of these suggestions or which sites would accommodate that. And I can definitely sprinkle it on kale chips, popcorn, in scrambled eggs, incorporated into dips and added to gf pasta and sauce.
Some people with Celiac I've talked to have reported a life-altering boost of energy when they went gluten-free. I felt much better in many ways, but had no such elevation. In fact, my anemia is still here and I'm signed up for iron transfusions every two weeks until I get into the normal range. Which tells me that even though I have celiac and I live a strict GF lifestyle, my anemia has got a different cause. And I'd really like to get that boost in energy that other people have gotten.
On a hunch, I've started researching lectin intolerance. My sister-in-law texted me last week about a runner she had heard about who was anemic because of a bean allergy. I little research later, and I discovered lectin. From the descriptions I read, it sounds like lectin intolerance can set off all the same antibody tests and causes blunting of villi in the small intestine, just as gluten does. Lectin is in just about everything, but especially grains (from what I can tell, gluten is a type of lectin), legumes, nuts, seeds and veggies in the nightshade family -- tomatoes, peppers, eggplant, and potatoes. If lectin is part of my issue, I'm not sure how I would get enough protein and remain vegetarian. No one's got a book or a suggested diet plan for lectin intolerance, though one paper I read on it suggested borrowing heavily from the Specific Carbohydrate Diet. The SCD is used primarily by people with Crohn's Disease, and it's apparently VERY helpful for that crowd. Another book to get and read in my quest for health and happiness.
So in January I visited my new doctor. Not surprisingly, she spotted my extreme anemia and did the one thing that probably made me get serious about following through with a plan. Instead of prescribing iron to take twice a day and asking me to make a follow-up appointment with her in three months, she gave me a scrip to get blood work done in three-months time. Whe'd get the results then we'd talk on the phone about next steps. Brilliant!
So I religiously took my iron for three months. I research iron absorption, veg vs. non-veg sources of iron and how they get aborbed, when to take it, what to take it with, etc. I missed one dose in three months, took it first thing in the morning with orange juice (then waited an hour before eating breakfast), took it last thing before bed (shooting for at least 2 hours after eating anything.)
After three months, I had my blood work done and spoke to Dr. Font on the phone. There had been a small improvement, so she recommended that I continue oral iron for three more months. I said okay.
In May, I experienced a bout of GI distress so severe I stayed home from work for three days in a row. In all, the episode of unpleasantness lasted more than three weeks. I saw a nurse practicioner at my doctor's office, who ordered all kinds of blood and stool tests (oh, joy!).
The tests revealed two things: 1) My anemia had actually gotten a little worse, and 2) there was no apparent reason for my diarrhea.
Dr. Font and I spoke over the phone again. She recommended that I see a hematologist for follow-up for the anemia. Enter the amazing Dr. Hartner. More in part 3.
So when I was twenty-one, I drove from Stillwater ot Oklahoma City to a mall to donate blood so that I could have a chance to win tickets to a Heart concert. I had organized blood drives and donated in high school, so the donating blood was no big thing. Heart tickets WERE a big thing. [I had already had a torrid love affair with my high-school-best-friend-turned-freshman-college-roommate, but hadn't consciously figured out the whole lesbian thing yet.] I was surprised when the technician, after a finger stick, reported that I was anemic and wouldn't be allowed to donate. Shit. No blood, no chance to win the tickets.
On the drive back to Stillwater, I had some weird back pains on my left side. I was very uncomfortable and had no clue as to the problem. When I got back to my rented house near campus, I did what any normal college girl would do: I ordered pizza and drank beer with my [platonic] roommates. The pain worsened, and to shorten what I tend to make a very long story, by the end of the night I was diagnosed with a kidney stone and released from Stillwater General to go home and pee through a funnel.
By the next day the stone still hadn't passed, so my mom came and got me with the intention of seeing her doctor the next day. The pain was so bad that she ended up driving me straight to the emergency room. To shortened this part of the story, these docs noted that besides the kidney stone, I was severely anemic and that maybe I had bone cancer, so they did a bone marrow biopsy. I will tell you that having a bone marrow biopsy will definitely take your mind off a kidney stone. Bottom line: No cancer. My anemia was chocked up to my being a menstruating college girl with a questionable diet. I was omnivorous at the time, but did not pay particular attention to eating balanced meals. We were all satisfied with that conclusion. The kidney stone was surgically removed (the operating room story is one for a different day), and since I was hooked up to all those IV's anyway, they gave me iron intravenously. Five days after I was admitted, I was released kidney stone free and with a replenished red blood cell count. I felt good and went about my business. No further follow-up for my anemia was ordered.
For 25 years I had recurring diagnoses of severe anemia. In fact, I NEVER had a normal red blood cell count after high school. The conclusion was always: "You are menstruating, so of course you lose a lot of blood. Take supplements. Eat more liver." Then when I became vegetarian, the tone turned more to: "What do you expect will happen if you choose to eliminate meat from your diet." I bought all of it. I'd take supplements for a while, and since my anemia didn't seem to be causing me any specific problems, I'd figure I was better, not stick with any follow-up visits to doctors to just check that, and by each regular check-up (which for me were typically 5 years apart), my iron levels would be low again. At least that's what I thought was happening.
Then in January, I started with a new primary care physician. That's where part 2 of the story will begin.