Celiac disease

Posted on: Sat, 04/22/2006 - 11:32am
Adele's picture
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Joined: 01/31/2005 - 09:00

I have a good friend who has been battling bouts of unexplained and 'sudden' diarrhea for the past year or two.

She's been seeing a doctor about it and after she kept a food diary, etc. he finally decided to do a series of blood tests. Now the finger may be pointing to celiac disease.
She's having an endoscopy with (I'm guessing, from what I've read online) a biopsy, next week.

I've been reading about celiac disease online and wonder how definite the biopsy is? The celiac disease diet seems similar to the peanut allergy diet...in that, if you don't know the ingredients - you don't eat it.

I'm hoping for her that it is only colitis or IBS but at least with celiac disease, the diet is the cure. Does anyone have anyone experience with it? If so, may I ask what your symptoms were? Do you worry about cross contamination, etc? Is it as restrictive as PA?

Thanks.....

Posted on: Sat, 04/22/2006 - 8:35pm
pixiegirl's picture
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Joined: 09/11/2005 - 09:00

I have Celiac disease.. and yes a biopsy is absolute positive proof of it, they either see damage or they don't, however if you get a negative biopsy you could still have Celiac disease and it just has not had time to damage your gut yet.
Celiac disease is genetic and is "set off" usually by some sort of trauma, surgery, child birth, a bad bout of the flu... you have the genes from birth but for a lot of people its not until some sort of "event" turns the genes on. I was fine until the birth of my daughter 14 years ago. Then I had all sorts of GI upsets, I too had the runs on and off, belly aches, gas, bloating, fatigue... I was diagnosed with IBS and lived with that diagnosis for 12 years until I finally got a doctor that knew better.
As you said, with a proper diet (meaning no gluten) celiac is totally managable. For some sticking to the diet is difficult, for me it was easy, after 5 days of being gluten free I felt wonderful for the first time in 12 years! There is no way I would even consider cheating on this diet. Celiac disease affects 1 in 133 people and is just now being diagnoses far more often.... there are many gluten free products out there, many restaurants have gluten free menu's its not so hard. There are also a few really good Celiac message boards and e-mail lists and its fairly easy to look up products to see if they are gluten free or not. Its a very very organized group!
Tell your friend its not the end of the world, its the beginning of finally feeling well!
Susan

Posted on: Sun, 04/23/2006 - 2:39pm
krasota's picture
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Joined: 04/24/2000 - 09:00

The biopsy makes things pretty obvious so long as the biopsy is done in the right area and *several* samples are taken (more than just a couple) and your friend has been eating gluten for 6-8 weeks and is not on any corticosteroids . . .
ygg

Posted on: Sat, 04/22/2006 - 8:35pm
pixiegirl's picture
Offline
Joined: 09/11/2005 - 09:00

I have Celiac disease.. and yes a biopsy is absolute positive proof of it, they either see damage or they don't, however if you get a negative biopsy you could still have Celiac disease and it just has not had time to damage your gut yet.
Celiac disease is genetic and is "set off" usually by some sort of trauma, surgery, child birth, a bad bout of the flu... you have the genes from birth but for a lot of people its not until some sort of "event" turns the genes on. I was fine until the birth of my daughter 14 years ago. Then I had all sorts of GI upsets, I too had the runs on and off, belly aches, gas, bloating, fatigue... I was diagnosed with IBS and lived with that diagnosis for 12 years until I finally got a doctor that knew better.
As you said, with a proper diet (meaning no gluten) celiac is totally managable. For some sticking to the diet is difficult, for me it was easy, after 5 days of being gluten free I felt wonderful for the first time in 12 years! There is no way I would even consider cheating on this diet. Celiac disease affects 1 in 133 people and is just now being diagnoses far more often.... there are many gluten free products out there, many restaurants have gluten free menu's its not so hard. There are also a few really good Celiac message boards and e-mail lists and its fairly easy to look up products to see if they are gluten free or not. Its a very very organized group!
Tell your friend its not the end of the world, its the beginning of finally feeling well!
Susan

Posted on: Sun, 04/23/2006 - 2:39pm
krasota's picture
Offline
Joined: 04/24/2000 - 09:00

The biopsy makes things pretty obvious so long as the biopsy is done in the right area and *several* samples are taken (more than just a couple) and your friend has been eating gluten for 6-8 weeks and is not on any corticosteroids . . .
ygg

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