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Greetings From A Newbie/my Diagnosis Experience

Posted by little_c, 15 April 2007 · 120 views

This is my first post in the gluten-free forum. Please bear with me while I get familiar with the controls. (in case it posts twice or something.)

I was diagnosed with celiac disease ten days ago. I was completely blindsided by the diagnosis. It was discovered during a series of tests I had for a routine physical. I also have hypothyroidism (underactive) and took a blood test to check my thyroid levels. My doctor also tested my iron levels and discovered that I was severely anemic. That led to some more tests, an upper GI biopsy and voila! here I am. I was one of those celiacs who had little or no symptoms. Don't know if that means I was diagnosed early in the process or what. Thinking back now, I did have very minor symptoms that I attributed to other things.

I immediately started thinking about the reality of living with this disease and what it means for me and my family. I'm married and the mother of two young adult boys. Obviously the family will be affected just as much as I will. My first reaction besides the shock was fear. Fear that I would reach for foods that I couldn't eat without thinking about it and, inadvertently, eat the poison that used to be sustenance. I looked through the foods in my cupboard. "Can eat" and "can't eat" became their labels. Then it was more fear because I had very little left in the "can eat" category. It being a holiday weekend, party plans were made and grocery shopping would have to be postponed for a day or two.

It was also an immediate challenge that family get-togethers will pose indefinitely to inform my extended family of my condition and hope that the meal would be something I could eat. I was lucky that it was a positive experience and I could eat the food.

My first gluten-free shopping experience came next. Encouraging that there's food out there, but shocking when looking at the prices of the food. About an average of 3x the price of 'regular' food. I always knew I had expensive taste...

Then the realization that if I want to eat truly gluten-free, I'll need to spend a lot more time on meal planning and preparation. Luckily I love to cook, but I don't make a lifestyle out of it. That will now change.

I haven't had my visit to the dietician yet. I've been searching the internet and reading the info my doc gave me for ways to try to cope. This forum is a great tool that I've stumbled across.

I'm still reeling from the news, but slowly getting my bearings. Next on the agenda is to get my kids tested, join a support group and continue to seek out gluten-free food bargains wherever I can. I also plan to learn to bake/cook great tasting gluten-free foods that even my family will eat.

Last night I went out and mistakenly got 'glutenized.' A setback just when I was starting to feel a little better.

I'm glad to have this forum to be able to vent to people who understand.

Yours in the subculture,

little_c

"Scrutinize and you won't be glutenized."

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Your case is very similar to mine. I didn't have any worrisome symptoms. What I had, I attributed to other things or thought they were normal. My biggest symptom, acid reflux/heartburn, which I wasn't even looking for a cure for because I thought it was normal (how many meds do we see advertised on TV for that?), went away after going on the gluten-free diet.

I just want to encourage you to get your kids tested and inform your whole family that celiac disease is a genetic disease. My mother has it and three of her four children have it (me included) and I've passed it on to BOTH of my children.

In my experience, family members are very resistant to even the idea that they might have celiac disease, much less getting tested for it. Get the word out anyway. You may be saving their life.
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Mosaics:
Thanks for the advice. I have two siblings and have already encouraged them to be tested. I'll be taking my kids in soon, too. I am the first in my family to be diagnosed, so if anyone else has it, they don't know it.
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I also agree that your whole family be tested.

I got tested after my father was diagnosed (he was 65 at the time) with celiac disease.

I am a celiac and so is my only sibling, my brother. Please note that abdominal pain is not only celiac related - as my brother thought - once he saw the doctor he was rushed into an emergency apendectomy! So always consult a physician - but get tested if anyone in your family has celiac - just to be sure!
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