Sorry if this is a repeat. I looked online but I only found things from 2008 or 2009 and I wanted to get some fresh insight.
This is a somewhat personal story for me, so when responding please try to keep that in mind. I do welcome everyone's opinion though. And sorry for the length.
My story in short is that I went to college when I was 18 in the fall of 2005 as a normal human being and came home for Thanksgiving break with an eating disorder. From August until Thanksgiving I had basically starved myself unbeknownst to my parents and lost 1/4th of my body weight. They reluctantly let me return to college but my mom and dad would alternate living with me. I quit school that December and as soon as I was home for Christmas, something triggered me to begin to binge on thousands of calories at night and starve myself during the day by eating zero calories. To get rid of the bloated stomach during the day, I began to take laxatives. This horrible cycle went on for four months until I was dragged to treatment.
I had 'successfully' completed treatment by August of 2006 and while I struggled that first year, I did manage to eventually bring my eating to a more 'normal' style. However, no matter what I ate I almost daily had mild diarrhea. To be honest, I never told anyone because I wanted it. In my still warped ED thinking, I wanted it to help my stomach stay flat. Slowly, the diarrhea became worse, and it was accompanied by mild gas and cramps.
In the fall of 2007 one day I developed a severe bacterial infection from eating undercooked meat and was hospitalized overnight. I got better quickly, but even though my stomach was fine according to my doctor, the constant diarrhea continued and actually got worse. By the fall of 2008, I had gained a considerable amount of weight and felt just bad all the time. The symptoms were worsening. I was gassy, bloated, and just sick but I was afraid to say anything because while I was suffering from my eating disorder I told everyone I had an ulcer and they believed me and I even believed it, even though it was a lie. I didn't want to have to convince my parents or doctors that this time I was telling the truth.
The summer of 2009, I moved to Brazil where I was fed by a host family. Violent bouts of diarrhea ensued and everyone told me it was just the water. Because of the sudden increase in severity, I believed them. About this time, joint pain began to surface, dry skin, and brittle hair.
I returned to the U.S. after three months and shortly after moved to Korea. In Korea, the symptoms continued until March 2010 when I made a decision to give up western food, buy a bike, and give up alcohol (and men for that matter ;> ). I felt amazing. While I did still have mild diarrhea, I lost weight and no longer felt sick. I made no connection with anything really at that time.
I moved to the Republic of Georgia in January 2011 for six months (I'm an ESL teacher btw). My symptoms returned almost immediately and much more severely. I stopped being able to walk up stairs easily, I had to rest after standing for more than twenty minutes, I would have bouts of cramping where I couldn't stand up straight. I threw up in the middle of the night, I missed school, I just felt awful. And I gained weight again. Again, people and doctors claimed it was from the water so I just took what medicine they would give me and put up with it. Some days it were better than others. I then moved to Iraq for six months where the symptoms ameliorated slightly but the joint pain in my knees and hips had gotten severe enough for me to quit and return to the U.S. My life of teaching and traveling had ended in my mind. I had no idea what was wrong.
After numerous doctor's visits over three months, I was diagnosed by a blood test. I got x-rays on my knees and hips, and the joints look fine. I got gum grafts because my gums had receded. But the doctor left me with just "don't eat gluten."
1) If I hadn't developed my ED, would I be diagnosed right now? I have this distinct feeling it was a trigger, although I'm really scared to say this aloud. I feel like some people might think I'm crazy.
2) I went gluten-free in November 2012 and felt 80% better in two weeks. However, despite the fact I try my best, the suffering continues. I stupidly ate from an almond butter jar from a non-Celiac friend and I was suffering for a week. Furthermore, dairy makes me terribly sick now and even nightshades (especially potatoes and tomatoes). After reading many posts on here I have started to take a pro-biotic and I'm reluctantly dairy free and night-shade free. Is there a chance I will win those two back?
I thought I would send you my thoughts on your post and questions.
First, from my own experience with eating problems, in my view it is more likely the other way around and the celiac has caused chaos with your eating and eating habits. At least, I think this was the case with me. Over 20 years ago I had an 'eating disorder' that involved bingeing and starving and exercising like mad - I used to get up in the middle of the night to do Jane Fonda workouts (that dates it )!
I would be desperate to eat, but the food made me ill and totally bloated so I would exercise like mad to try and get rid of it. I also had permanent migraine.
Stress just makes the whole cycle worse.
My own view (as told to psychologists) was that I felt desperate to eat and thought my body may be craving a certain vitamin or mineral. I was also depressed and felt 'fed up' in the truest sense of the word.
I cannot count the number of times I have told docs over the years that I felt it was something to do with what I was eating!!!!!!!!!!!
I think for some of us that celiac can trigger this kind of eating problem. I don't know if this is from the gluten itself or due to malnutrition from lack of nutrients. Either way, disrupted eating patterns can easily become difficult to alter and digestion and the brain seem to be closely linked.
Number one priority is to establish a good gluten free diet and put effort into reversing the old ED patterns.
I also believe it is the other way around. I had unexplained weight from the time I was a toddler...never overeating and we lived on a very steep hill...it was a one mile uphill walk from my elementary school that I walked each day from the time I was 5. Three miles on bike to and from school for junior high and about two on bike RT to HS before we started driving.
At 11 or 12 when girls start to really worry about their body image as they become interested in boys -- I began to eat even less - and I had never eaten much to begin with. By age 13 I was eating two salads a day with "Tab" (diet soda before diet coke) filling me up all day long. During my high school days when all of my friends were extra concerned with weight we used dexatrim and diet coke as the staples with very little real nutrition added in. Now here is the strange part -- I felt better during those teen years than I did anytime in my childhood or early adulthood when I was eating good healthful food.
Yep, this is why I believe I had undiagnosed celiac disease - my entire life. How about you?
Thanks for the responses. Lady Eowyn, I had never thought that my celiacs triggered an eating disorder. It's hard to look back objectively, because now that I've been diagnosed it's easy for me to say, "Oh that must have been because of gluten" but to be honest, I could see where my ed perhaps simply made my celiacs more apparent? I'm newly diagnosed, so I'm still trying to figure things out but from what I've read you may not have symptoms but something happens in some people to suddenly make the symptoms appear.
GottaSki, my problem was always gaining weight. My weight would fluctuate drastically and in fact never stabilized until now that I'm gluten-free. So in that sense, I could see where my celiacs cause my ed. Even now, when I have an cc episode, I automatically gain 3 to 5 pounds of water weight and if I have a couple of bad episodes in a row my weight rises by a few pounds for weeks.
Thanks again. It sounds weird, but my first thought when I was diagnosed was that maybe many of my ed habits would return now that I have to worry about what I eat so much. The whole point of getting rid of your ed is to eat healthfully and treat your body well, but at the same time feel comfortable eating anything when the occasion calls for it. Most importantly, getting rid of your ed means that you're no longer that person that eats strangely, the one with special foods needs. Now that I'm that special person again, I'm worried. But we'll see.....
This is why I think it is necessary to do some serious push- back to the Media Themes of the Month, regarding whether or not gluten free dieting is necessary or a "fad." I have seen editors targeted, and then several pieces placed in women's magazines and online soft news, with the faux- concern that if one is restricting any food group it is a sign of a potential psychological disorder. Too bad the people passing the links around the most just happen to be long time opponents of gluten free labeling standards, because of their financial ties to the other agricultural industries. I can't shame them, nor can I out right stop them, but I can continue to point out the reasons why we are seeing this crop- out of stories about "imaginary" "faddish" "harmful" gluten intolerance dieting, vs. the so- called legitimate 1% of celiacs who have the real reason for eating gluten free.
To the original poster:
1. Don't worry what other people "think," because you may have had celiac from infancy or early toddlerhood, and never been diagnosed. It takes a long time for the damage from auto immune malnutrition to accumulate to the point where it shows up on the medical tests, and even so, the doctor(s) have to be considering this possibility as the reason, or it doesn't matter. Blaming the ED for the celiac is putting the cart before the horse, so to speak, because being low in nutrients affects moods and behavior. Most people don't recognize that the gut, not the brain, is the source of most serotonin, and that poor gut health = poor brain health. Digestion does not take place without those bacteria working in the gut, and if you alter the bacteria, by eating certain foods to make them healthier, you also alter how digestion works, for the better. They also do not realize that certain medications taken, including those to treat mood disorders, can impact the absorption of certain nutrients.
2. As your gut heals from avoiding the problem protein (gluten) which is triggering your auto immune system, you may indeed "win those foods" back which are making you sick, after avoiding them for awhile. I am speaking from experience as I was dairy free at one point, and if I can go dairy free, anybody can. I think I set the record for trying different brands of yogurts before I stopped trying. Turns out that I am sensitive to non- organic dairy, and to certain yogurts which are using dry milk as thickeners which are not totally processed by the bacteria to be lactose free. That was then, this is now, I can now eat cheese, yogurt, cultured organic butter, organic cream, and very small amounts of organic milk. Tracking down the hidden gluten in other items, led me down many false paths. In the meantime, you can select alternative foods for your protein and fat sources, and try them out and see how you get along with them. Don't be afraid of "good" sources of fat, such as from extra virgin olive oil and coconut oil, avocado, nuts, eggs, etc, because your brain just isn't going to function without it. Some people have to use traditional things like lard, or even palm oil shortening, to be able to bake their own foods and get the texture they want in the finished result. I can do almost anything with olive oil, and was making cake with oil a long time before going gluten free, that is how my mother baked, so it was just a matter of switching flours. For the "nightshade" problem with white potatoes, you can substitute sweet potatoes or yams. In the past, when I lived in rural flyover- America, and we could not get a decent tomato for about 4 to 5 months a year in the groceries, after the garden went dormant, I learned to use different types of fruit in salads to get the same resulting contrast in flavors, anything from grapes, to kiwis, to berries or thinly sliced apple. Cooked, sliced beets would also work. If you have never had sliced beets sauteed in olive oil (optional, fresh garlic and sprinkled with sesame seeds) and a bit of agave nectar, you are really missing out on an interesting vegetable. Eating gluten free is not restrictive, it is eating outside the fast - food box that other people have corralled themselves into, because they can't cook.
I can understand your feeling that the eating gluten free is embarking on another 'obsessing over food thing' and that this might seem encouraging to an eating disorder.
All I can say is that it hasn't worked out like that with me. Simply DON'T let yourself view it like that. You have discovered what to eat to keep your body happy and healthy so just go for it and keep the whole gluten free way of eating as a positive move.
Without gluten my appetite and eating habits are normal (without trying) but one of my symptoms of cc is that it triggers me to want to eat. I will add here that one or two other foods do this to me as well. All those years of desperate eating were from the gluten. Luckily (sort of ) I never gained any weight in spite of eating masses and whenever I tried to eat healthily (cutting out the packets of biscuits, cakes, etc) I lost more weight - thought I had a great metabolism!!!! I couldn't do it now - I would gain weight now and would be appallingly ill.