When You Are Diagnosed

[GlutenFree2]

I was wondering how everyone reacts when they are first diagnosed. I have a friend that might be diagnosed with celiac disease, and he was asking me how he might react. Personally I liked to sit in the corner and cry. What did you guys do? I need to tell him some ideas of how he could act. I don't think that he realizes that he can act anyway he wants to.

[jerseyangel]

Well, I think you'll get many different answers to this.

I had unexplained symptoms for well over 20 years--since childhood, really, looking back. By the time I was diagnosed, I was 49 and so ill that I thought I was dying (literally).

For me, it was what I'd been looking for for so long--an answer. I was grateful that there was a treatment (gluten-free diet) and couldn't wait to cut out gluten if that's what had affected my life for so long.

I haven't touched a morsel on purpose since the day I found out 3 years ago nor have I been tempted to.

[lizard00]

I'm with Patti on this one. I was relieved.

But I'm opposite... I am only 26 and thought that if this was what my life was going to be like, I didn't want to live it. Being sick everday, too tired to do anything, and even if I wasn't sleeping my life away, I had begun to lose interest in most everything, so.... yeah, finding out that gluten was the problem was a welcome.

But we deal with it differently. Tell your friend there is really no clear answer. As long as he can come to terms with it and appreciate his new chance at being well. But for me, there are far worse things out there. I'm glad that I don't have to take handfuls of pills 3xs a day... ya know. If you have to have a disease, this one isn't so bad.

[hawaiimama]

I knew. Deep down in there I knew it would be postiive so when he told me I wasn't the least bit suprised. I think I was more shocked when he told me he wanted me to have the test. Its funny becuase that morning I was going to grab a donut with my coffee before I had my appt and decied that I likely should becase I knew what was coming. I mourn that donut

[GlutenFree2]

Ok, thanks you guys. I know that he is really nervous because he has seen the way that I have to eat. I have even let him try some of my gluten-free bread. He spit it out, ha. I have been trying to explain what it is like, but I have only had it for 8ish months. I am not too experienced yet.

[WW340]

When they first drew the blood work, I thought it was a really far fetched idea. I thought there was no way that was my problem. However, I did some online research while waiting for the results and the more I read, the more convinced I became that my test would be positive.

I was pretty sick at the time, so I had a mixture of relief and shock. The real shock came during my first shopping trip. I spent 2 hours in the store and came home with corn tortillas, chicken and rice.

It has been a bit of an emotional roller coaster for me. There was a period of anger and frustration a few months into the diet. I would say I went through all the stages of grief and now I am at acceptance.

[GFinDC]

I was glad to find out it was what I thought it was. Or rather what my sister thought it was. My sister figured it out, not me or the doctors. I was confused at first about what the heck I could eat, and made some mistakes right off. And it has taken quite awhile to learn to avoid the stuff. But the celiac diagnosis makes so much sense to me thinking about my other family members with digestion diseases and other autoimmune diseases too. It does take some effort and time to learn how to eat again. But it is all good stuff to get better and feel better cause you are no longer being hurt by the foods you eat.

[chb]

Personally, I had been feeling so awful and been back and forth searching for answers, I was very relieved to have something to grasp on to. Of course, it's a lot to fully take in at once. I have a lot of days now that I am feeling better that I have a pity party for myself that I didn't have when I found out gluten was a problem.

It was a much harder blow for me when I got my Enterolab results back and realized I needed to cut out dairy also.

[dandelionmom]

When my daughter was diagnosed, I was ecstatic. They were running all sorts of scary tests including ones for pediatric cancers. I think my exact words were, "Is that all?! Thank God!" Then when I found out that I had celiac disease I think my exact words included several choice phrases that would not be polite to type! Then I got kind of angry (at all the doctors who failed to diagnose me). But that went a way pretty quickly (and only resurfaces when I'm faced with baklava). I think hopeful and relieved would describe the attitude I most felt when both my daughter and I were diagnosed.

[angieInCA]

Having just been a little over a week since I had confirmation I can tell you exactly how I reacted.

Pure Elation at first. I was so happy to have an answer and a definition of what had ailed me for all my life and thankfull ti wasn't something oh so scarier!

After about day 3 the the fear crept in. Now that I had the answer I had to figure out how to live with it.

At about the one week mark total anger set in. Anger at every Doctor I had ever been to that said nothing was wrong. Anger at every Doctor that had ever looked at me like I was making it all up and it was all in my head. Anger at the tests I had endured and not one of them had been the magic one.

I'm getting past the anger and right now I feel relief. I feel good. After just 3 days of no Gluten I started experiencing no heartburn, no cramping, no almost not making it to the bathroom.. I'm looking forward to no more itching, no more tingling in my finger and toes, no more pains in my joints. I want an unclouded brain and energy to do the things I enjoy.

I want the life I feel had been taken from me.