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Aimee's Story


Aimee's Story

I was never considered to be a "healthy" child by any doctor who ever encountered me as a child or adolescent, and yet somehow it took until I was 15 years old for a diagnosis to finally hit home. Not to say that I hadn't had my share of (incomplete or mis)diagnosis. These included; childhood failure to thrive, Mediterranean anemia, asthma, GERD, Ulcers, immune system malfunction (not otherwise classified), chronic bronchitis and any infection that breezed by me on a cool (or hot) day.

My body was poisoned and no one could tell me or my educated parents (a registered nurse and a biochemist)why I was so sick all of the time. I remember times where I would eat two bites of food and feel like I was going to throw up(manicotti is one that I remember the most). I also remember breaking out into what I though were hives each morning when I took my shower after eating breakfast. The signs were there as I now know, but doctors just never put the together. I even wound up in the ER on numerous occasions as a young teen. I remember being told that "it was all in my head, and there was nothing really wrong with me". Anxiety attacks were blamed for my extreme abdominal pain and skin breakouts. The worst part was that I believed them, and would put myself down for feeling sick on a daily basis. Certainly I had the capability to get past these "psychological" problems.

Despite feeling sick all of the time (I didn't know this as I had no experience of what it was to feel well in my entire life up till that point) I was able to keep up in school and was always an honor roll student despite missed time. These days I would have flunked out due to attendance policies, but thankfully it wasn't like that back in the late 80's and early 90's as long as I did the work I did well.

Anyhow one day in the early spring of 1993 my doctor decided to prove my mother wrong (as he believed that all of the problems were either her fault or mine based on what he used to say to me) and order some allergy testing (RAST testing) for me. He decided to test me for anything that I might regularly be exposed to (as I recall they took 14 vials of blood for these tests). Three or four weeks later, after hearing nothing back, my mother went on the computer system at work to pull up the results of my test (which I should mention had been received by this doctor about one week earlier). I reacted off the charts to Wheat, Rye and barley.

Suspecting that I wouldn't believe just her word, she printed up the results to bring home with her. I remember I was just about to eat a donut when she came in from work and said "you might not want to do that" and handed me the paper. I was so upset that my dad and I headed out to the store to find something that I could eat. It took me (and my dad who was able to decode the labels right away) over an hour to find something that was suitable for lunch that day.

It was the beginning of my dedication to a gluten free diet. It was several years later before I had an upper GI series performed, and despite my efforts there was a bit of old scarring (flattening of the villi) still present at that time and my diagnosis was "official". The first year after my "self" diagnosis proved very difficult for me. Emotionally it was difficult for me to believe that doctors had mislabeled and falsely accused me of psychological manifestations. It was also very difficult for me to accept food (the enemy that had almost killed me). I was skeptical of all food that I didn't personally prepare, and I actually lost weight after being diagnosed (I went from 98 LBS at 4'11" to being 87 LBS at 5'3"). This of course caused the same physician to label me as "anorexic nervosa" and try to hospitalize me if I didn't agree to start "eating again". It was comical to me, because I had gotten taller for the first time in a long time and I was less anemic then usual and my nutritional status was under question by him for the first time. I agreed to gain weight (which I was trying to up to this point anyways) and I went on a search for gluten free supplemental nutrition. I contacted companies to find out which ones offered products that were gluten free. I remember at that time that Ensure told me that their vanilla was gluten free, so I would agree to drink that in addition to doing all of the cooking at home (to ensure no contamination).

I thrived and gained 18 pounds in the next year. Then after high school graduation before I went away to college I gained 10 more. I looked healthy and felt good for the first time in my life right as I went away to college. I have never looked back from there on and I wouldn't trade my health and happiness for all the donuts, and pizza in the world. Besides I can make them gluten free any time I want to. I now have a beautiful little boy (almost 2 years old), who happens to be celiac as well, but he will never know the pain, bloating and stigma that comes from undiagnosed celiac sprue. After my diagnosis (the official one which came years after I knew), my aunt was diagnosed and since then her life has taken a huge turn upward as well. Being diagnosed with celiac sprue is not a problem/burden, not being diagnosed is.

Does this story sound similar to your or a family members? You might have celiac disease. Find out now, take our celiac disease symptoms checklist.

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