Before Diagnosis

[Kaycee]

Not sure if this is the right place for this, but here goes. A lot of new people here, just diagnosed or suspicious they might have problems with gluten might think we know it all, but I would just like to remind them, that some of us went in knowing virtually nothing about coeliac, gluten intolerances and sensitivities, and that we are still learning all the time. A lot of what I have learnt is through here, and a lot of what I have suspected has been confirmed here as well.

Before I was diagnosed with coeliac I knew hardly anything about gluten problems, and it is quite amazing how much I have learnt in a year. I know enough to not get myself sick too often. So I have come a long way.

What I knew before diagnosis, or even before I even an inkling it could be gluten related was what my Aunt who had just married my father's brother 18 years ago, had coeliac. The aunt, her daughter and a granddaughter all had it. So I'm guessing I realised it was genetic. I was a bit awestruck, fancy not being able to eat bread etc. She did point out she had found a pasta sauce she could use, and that made me think that processed food might be a problem. She always bought her own bread and cake with her on visits. That is about the sum total I knew. But I do remember asking myself not long later whether that was my problem, and I went nah, no way, so I guess I had a bit of the D even then.

I forgot about coeliac for about 15 years until my problems were getting so bad, I needed answers, it had got to the stage where I realised it was probably something I ate everyday, and that was when I made deep inroads into realising it was bread. The rest is history.

Cathy

[num1habsfan]

I knew absolutely nothing, have never heard of it before I got it, have known nobody with it

~ lisa ~

[Lisa]

Zip, nada...After my biopsy I had to get on the internet to find out what Celiac Disease was.

[Nantzie]

Well, the date I joined this forum was Sept 2, 2005. On Sept 1st, I had never even heard of it.

In fact if someone had told me on the 1st that they couldn't have gluten, I probably would have thought they meant glucose. I don't think I had ever even heard the word in my life.

Nancy

[Viola 1]

0...Zero...Zip...Nada...Nothing!

Everyone around me thought I was nuts when I got diagnosed. Although that was quite awhile ago, I'm finding that many more people recognize the word now.

It is getting better ... by about 1000%

[chrissy]

i knew a bit about celiac disease before my girls were diagnosed because i have a friend with it-----she had actually been telling me to be tested for it because of my fibromyalgia. (i don't have celiac)

[marciab]

Zip here too. And I thought the people here were nuts back then ... and now I'm one of them ... Marcia

[GeoffCJ]

I had symptoms for 10-12 years before figuring things out. In that time I'd be diagnosed with nutritional deficiencies, IBS, insomnia, lactose intolerance (not true, I tolerate it quite well), had nerve issues no one has solutions for, and I'm fairly certain at least two drs probably had the hypochondriacs in their notes about me.

I'd never heard of Celiac disease. I found this site and others after seeing dramatic improvements in my well being while on the South Beach diet, and searching for a possible link.

Geoff

[Guest cassidy]

I was sick from birth and it took 28 years for me to be diagnosed - not one doctor mentioned it once during that time. I think I knew gluten was in wheat but I had no idea that people could have a problem with it or that food allergies/intolerances could cause all these problems that I had been having.

My mother had dh and went gluten-free without doing much research or even realizing that she had intestinal issues. Once you live with intestinal problems for years, you think they are normal. So, it took her 4 months of being gluten-free and finally doing research to discover that I had it as well. I even did some research for her during that time and remembered thinking "I feel bad for those people I'm glad I don't have that." It took an article about enamel problems for me to be like - that is me!

[jerseyangel]

About a year before I was diagnosed, I went to an alternative practitioner. Among other things, he told me to not eat wheat, oats, barley or rye. This was the first time anyone had suggested my issues could be caused by something I was eating.

I began to read everything I could get my hands on--and came across Celiac Disease. I got my GP to give me a referral to a gastro, and I asked him, point blank, if this could be my problem.

He explained what Celiac was, and answered the questions I had. At the time, I didn't have many--I didn't really have a clue. He scheduled my endo and colo that day. A month later, I had my long-awaited answer.

So, no, I knew nothing about Celiac until right before I was diagnosed. Just about everything I know about dealing with it I learned right here.

[Phyllis28]

I knew absolutely nothing about Celiac until the day I was diagnosed.

[jayhawkmom]

I knew a little bit. A very little bit, only because Celiac was mentioned to us 5 years ago when our oldest son was just 2 years old.

He fit the profile... his pediatrician ran blood tests, they came back negative... and that was the end of it.

At 4, he started having some "psychological" issues. The psychologist we were working with suggested we have "peptide tests" done at the Great Plains Lab, as she automatically associated the types of issues he was having with a wheat or gluten intolerance. Again, the testing was negative.

At 2 and again at 4, when Celiac / Gluten intolerance was mentioned, I did *some* research. But, when I started doing the research, I was so afraid of what I was finding that I just gave up and hoped for negative test results.

Now that I know what I know about the test results and methods... I'd love to get my hands on those first test results to see what the actual numbers were. Especially since now, at the age of 8.5, he had positive blood tests.

I'm absolutely certain that if we would have started a gluten-free diet with him back then... even as a "trial" thing, his life would have been much different today.

[ArtGirl]

I knew in a purely academic way that some people have problems with gluten (I even knew what gluten was - I baked a lot of bread at one time). It was a long long road from that to UNDERSTANDING what it means to be intolerant of gluten. Years ago I had an allergy panel (blood test) that came up low-level sensitive to gluten, but they didn't make much of a big deal about it - and so, neither did I.

What I've learned, I've learned here on this forum.

Knowledge is power. I now have the power to be healthy - and it's great!

[lonewolf]

I knew quite a bit about Celiac Disease before I figured out I couldn't have gluten (I've never actually been diagnosed). I was very thankful that I didn't have to avoid "hidden glutens" or barley malt or any of those other things that Celiacs couldn't have. I thought I was allergic to wheat and just couldn't handle barley, rye or oats. I was pleasantly surprised that when I stopped eating gluten completely all my digestive issues cleared up totally.

[wowzer]

I grew up with a celiac in my house. My little sister was diagnosed when she was about a year old. I still didn't realize that there was so much to this diet until I went on it. I remember she couldn't have ice cream. Of course she was diagnosed 44 years ago. Many things that she basically lived on aren't considered safe now. Of course it seems to be an ever changing way with ingredients. I have learned a lot from this site. Got glutened with a lip gloss. It definitely is an never ending process. It seems with the new labeling laws a lot of companies are afraid, so they say they don't know about CC. Good luck, we all keep learning.

[ravenwoodglass]

I unfortunately I knew nothing and the doctors that did the celiac panel over and over again never told me what it was for only that it was negative and I should be glad because I wouldn't be able to eat anything. Meanwhile I became sicker and sicker and eventually was close to death before an allergist discovered it. I was confirmed by my GI after a challenge almost killed me. I just wish I had known sooner maybe some of the neuro damage I have would not be permanent.

[gfp]

Zip, nada...After my biopsy I had to get on the internet to find out what Celiac Disease was.

I had a gluten-free at univeristy 15+ yrs ago who's sister had it.... though I'd forgotten the name...

The whole concept is so silly anyway, how can you be allergic to wheat

[par18]

A couple of days before my one and only GI appointment I was freaking out because of the rapid weight loss and nonstop D. I called the on call doctor that weekend. I told him what my symptoms were. He "mentioned" possible Celiac. Two days later I saw the GI who ordered both scopes based on my physical condition at that time. One week later I had the Dx. Looking back my symptoms matched Celiac more than any other possible cause (20/20 hindsight is always better). Like so many others I learned most of what I know from the internet after the Dx. I'm tempted to find out who that on call doctor was and tell him he was "right on".

Tom

[darlindeb25]

I knew quite a bit about it, my sister was diagnosed in March, I went gluten-free in July. She talked to me about it all in June and suggested that since I had no money for testing, maybe just trying gluten-free out would make a big difference. I've been gluten-free since then, will be 6 yrs in July.

[ianm]

I knew what it was but that was it. I didn't figuire it out for myself until I tried the Atkins diet. There is a chapter in the Atkins book about food allergies and intolerances and that is when the light went on.

[zakismom]

I didn't know a thing about celiac. When I was really sick and on bed rest I did come across celiac disease on the internet. I went to the library and found a single sentence about it! Thank God for the internet!!!

[happygirl]

Zip, nada...After my biopsy I had to get on the internet to find out what Celiac Disease was.

Ditto. Mine was after my mom told me to have the test done for it because she'd read about it.

Unfortunately, my doctors also knew "zip, nada" as well. Perfect.

Thank goodness for the internet/particularly this site, Dr. Green's book, and journal articles

[babygirl1234]

i knew nothing about celiac disease unit i was Dx with it

[Yenni]

I had heard about it but knew almost nothing. You know the common thing " Can't eat bread". I had no idea how complec this is and how common it is to have other intolerances too.

[Canadian Karen]

I hadn't even heard of it until I came home one day and there was a message on my answering machine with my GI giving me my results and saying I was positive for celiac disease. I had to replay the message a few times to figure out what the heck was he saying and how do you spell it????