Diagnosis Question

[anniej55]

Hi,

OK - I have a (maybe stupid) question. I was diagnosed about 2 months ago -and didn't really have any symptons other then being tired. No stomach problems at all. Around the time that I had routine bloodwork (and it came back abnormal) I did have the bloating/cramping that people talk about .... and then the, um, physical response to that.

So - was there no damage done to my my intestine up until the time the celiac disease was kicked into activity? I know a lot of you have been sick for a while before diagnosis, but it was a matter of weeks for me, which is why I can accurately recall being well/being sick. And it ticks me off, cause if I knew WHY I was bloated the first time I would have stopped eating wheat thins and beer and then - would I have avoided the full blown celiac disease?

I have an appt with GI next week, first time I'll see him since the diagnosis. I've been dealing with my GP who isn't that knowledgeable, but is a GREAT diagnostician and has sent me to wonderful doctors, so no complaints here.

Thanks all

Ann

[KaitiUSA]

The damage starts when celiac is activated. Most likely you had a silent case and did not know it was activated and then later on the symptoms started. So if I had to guess I would say the damage has been there for some time and you didn't know about it.

IMO, I think that there should be screenings done because it is pretty common in this country.

[julie5914]

Eating gluten doesn't cause celiac - you couldn't have prevented it in any way. I don't think it is known yet what activates it in those of us who didn't get symtoms until later in life. Among those of us who haven't had symptoms since we were very young, we also don't really know if damage has been occurring all along with no symptoms of it the disease itself didn't actually activate and start causing damage until we started seeing symptoms.

For example, I can remember having a nervous stomach and having eating disorders in my teens, but the real trouble digestive-wise, fatigue, anemia and all that didn't start till after I got mono. And it wasn't immediately after mono, it's just something that I can remember was around the same time I started noticing symptoms. So I don't know if damage started with symptoms or if I had had a silent case all my life and just got symptoms after mono. Either way, I couldn't have stopped it.

[Jonesy]

There seems to be a lot of mystery about the disease in each and every case.

Your pre-disposition to the disease has been there all along. There's nothing you could have done to prevent it. My GI would not even venture a guess as to how long I've had it - the Dr.'s don't know and there isn't any way for them to tell. They can tell from the biopsy just how bad the damage is to the small intestine, but they can't tell how long it's been that way.

The important thing is to be diligent about keeping gluten-free so the gut will heal as quickly as possible. I've read that it takes 2 to 5 years - I think it depends on your age and the severity of the damage.

It's not an easy diet, but it could be a lot worse. There is a lot of support here with ideas of trying out new foods that you would never have tried. The gluten-free diet is a healthy diet, and even more healthy is the SCD (specifically carbohydrate diet) since it eliminates really unhealthy processed foods.

Best wishes to you in your efforts to go gluten-free.

Maryellen