After 14 Months

[Laura]

This is my first time here, but I was diagnosed 14 months ago. And I suspect I'm going to go on a bit, for which I'm sorry. I just feel this really deep need to assess where I stand right now, and I actually originally was going to go see a therapist but then I thought I'd try this first, since maybe the thoughts of other people who've gone through the same thing would be more helpful.

I'd had a stomach flu that was going around and that caused most people a couple days of discomfort. Two hours after my symptoms started I was too dehydrated to stand. The university health service admitted me as an inpatient and sent me back to the gastroenterologist I'd seen 2 years earlier for serious food poisoning. She just shook her head and said basically that people don't get this sick twice without an underlying cause. My immunoglobulins on the routine blood test were low, so she tested for IgA deficiency and when that came back positive she tested for celiac disease. She called to tell me that was positive literally as I was getting dressed for my friend's birthday party. I spent the evening and indeed the next several weeks shoving gluten foods into my mouth and belligerently telling everyone around me "I shouldn't be eating this."

Then I got sick of listening to myself and gradually began to cut gluten out of my diet. It was gradual because while I'd obviously been sick, I didn't have immediate symptoms (I thought). I didn't and still don't have diarrhea or anything like that from gluten. So I thought I didn't have symptoms other than what led to the two visits to the gastroenterologist.

Well, I used to get 6-8 colds a year. And I mean bad colds. My housemates would come home with mild sniffles and a few days later I'd get something so bad I had to go to bed for 2 days with body aches and chills. In the past 14 months I've had 2 colds, and neither was worse than what people around me were getting, nothing like what I used to get. The second one did turn into a sinus infection, but because my beloved, wonderful doctor had told me that I could expect to be prone to sinus infections, I was on antibiotics within a day of having symptoms, rather than letting it drag on for months like I'd done in the past.

I used to get my period every 2-3 months. It started being regular immediately I gave up gluten. Doctor said it was because I wasn't absorbing nutrients. The funny thing about that is that I was getting FAT. I gave up gluten and lost 10 pounds immediately, and one of the times I cheated since, I gained 5 pounds in 2 days. People act like it's because if I'm not eating gluten it must be because it's like being on Atkins, but since I eat french fries, corn tortillas, rice, ice cream, etc I don't really see that argument. I eat whatever I want, so long as it's gluten-free, and I don't gain a pound!

But the amazing thing that happened was that I'd always thought I was depressive. You know, I spent a year of my life in high school just wanting to die (coincidentally or not, the first year that I got every cold and flu to go around). I'd had recurring bouts of depression every year since and my happiness, when I was happy, always felt so fragile, like it would shatter if you poked it too hard. Three months after I'd really gone gluten-free I realized that I felt this abiding, untouchable sense of joy. That's lasted ever since. This is not to say I don't get sad, frustrated, angry, but all those things are like a layer applied over a core of serenity and confidence that I never had before. It is the most amazing sensation.

But what I've realized in the last month or two is that I'm not untouched by this. I thought that because in the end I had relatively little trouble giving up gluten and because there were so many wonderful effects, I was simply ok, that life was just better and I could go on with it. Then I got that second cold and spent like a week in tears because of how sick I was not. I just couldn't stop thinking about all those times I'd wondered if I was malingering because I was in bed with a mere cold, and just how many weeks or months of my life I had lost to that. Then last week I saw some pictures a friend had only just developed after 2 years and I was so shaken by how I looked in those pictures. I was fat, but you'd think I could think "well, I'm not fat anymore. yay!" My skin tone was also terrible. I just can't get over the awful feeling of seeing that.

Part of me, most of me, still feels like this wonderful thing has happened to me. It's like my body and mind have received an amazing upgrade. I don't want to imply that I don't feel that way 98% of the time. Especially reading people's stories here I know how little I suffered before diagnosis compared to what I could have (and would have without totally accidentally getting such a wonderful doctor). But sometimes I just feel so traumatized thinking about the years I lost, not knowing anything was wrong but weakened and dragged down by something I didn't even know wasn't my real, best possible self. Does this sound familiar to people? What do you do to deal with those feelings?

Thanks!

[aldociao]

Laura,

Thank you.

You have said eloguently what I have thought and felt since learning what it was that I must have--but unlike you, without benefit of that rare bird: a knowledgeable doctor. You're one of the lucky ones to catch this thing early on. I must say that reading your post made me teary eyed--a very uncommon reaction for me. I too am beginning to see the return of health--after 19 years of neither health nor sickness. Your words have toughened my resolve to do whatever is necessary for a complete return to health, and to have daily the same wonderful experiences you are now having. --Aldo

[Guest LisaB]

Laura,

I'm glad your first choice was to come here and share, if you need more after talking things out here then it is good that you seek what you need, but openly expressing your feelings helps not just yourself, but all of us as well, thank you.

I think there are at the very least, waves of mourning over time lost, pain suffered, the humiliation felt. Sometimes people go through a more intense period of that. And many times of feeling bad at not only how hard others were on us (implying or saying we were lazy, etc) but more importantly, how hard we were on ourselves, how bad it feels to realize we doubted ourselves. We wanted others to understand and support us and yet maybe we didn't even do that for ourselves deep down, did we unlovingly push ourselves beyond what we could do, or drag ourselves out of bed when we should have allowed ourselves the needed rest, or did we lay there and feel guilty and berate ourselves instead of fully relaxing? And then later were we more angry at others for not understanding, or being critical of our weakness or appearance and neglect looking at how we feel about ourselves?

I also think that it is important to mourn, cry, let it out and let it go.

If you look at what this has taught you, that now you have the rare ability to sympathize with so many, even beyond this disease but anyone who suffers from something no one understands. How unkind and unloving so many people can be for looking down on someone who looks unhealthy when instead they should see beyond that and there should be support, sympathy and kindness for someone who is suffering and pulling themselves through life with little to no energy, or suffers in some other form of pain. It is said that to suffer for no reason is devastating, to see the reason in the suffering, the purpose that it can serve is empowering. If you had gone through life without this experience you would really be at a disadvantage, you would lack the knowledge that you now have and the ability to help others with the full understanding you fortunately have gained.

More importantly, please know that so many of us understand your feelings and personally, my heart goes out to you because I understand and even though I lost 20 years of my life and spent almost all the money I ever made on trying to get better only to stumble on information on the web (for free) after trying everything else, I am glad I do.

[seeking-wholeness]

But the amazing thing that happened was that I'd always thought I was depressive.  ...and my happiness, when I was happy, always felt so fragile, like it would shatter if you poked it too hard. Three months after I'd really gone gluten-free I realized that I felt this abiding, untouchable sense of joy. That's lasted ever since. This is not to say I don't get sad, frustrated, angry, but all those things are like a layer applied over a core of serenity and confidence that I never had before. It is the most amazing sensation.

Laura,

I know exactly what you mean, only you expressed it much better than I could have! I just recently had the dubious pleasure of informing my parents-in-law that I and my children are gluten-free for life (we'll get tested by Enterolab as soon as we can afford it, but that won't change our diets since we are all doing so much better gluten-free) even though THEY are convinced that there is absolutely nothing wrong with any of us except that I am a hypochondriac. They absolutely refuse to acknowledge that *I*, not they, have the right to decide what my minor children will eat (even when we are visiting them), and that I don't HAVE to get their approval--or even a doctor's--to be justified in my decision. And yet, even through all the yelling and screaming and hollering that ensued, I was aware that I was in control of myself and not in danger of shattering into a million pieces right there on their kitchen floor. I am actually quite proud of myself, because in spite of the remarkably juvenile tactics they employed to try to provoke me and the way they attempted to tear my personality and character to shreds, I managed not to say or do ANYTHING that I would regret later! Now THAT is an accomplishment for me!

Like you, I realize that I have been extremely lucky to have discovered the nature of my problem before my symptoms became severe. Every so often I feel a flash of anger that I spent 27 years of my life slowly falling apart, but one time I felt this way I actually took a few minutes to imagine how my life would have been different if I had been diagnosed at an earlier age. I considered my family's reaction, how my parents would have managed a gluten-free diet for me (or maybe not!), how the kids at school would have treated me, how my relationship to food would have changed, whether I would have gone to college away from home (where I met my husband), and any other factor I could think of, and I concluded that an earlier diagnosis would probably have hurt me more than it helped. I am sure that as time goes on I will experience grieving periods over the various ways that my new life is not "normal," but I hope they never obscure that core of sheer and shining joy that I have discovered within myself.

Thank you for sharing your experiences, and I hope your inner joy continues to sustain you through your necessary and healthy times of mourning!