Hello,
My name is Lori. I have been struggling since February (although digestive ups and downs for many years..). Pain and D became a daily battle. At first the docs thought it was IBS, and I tried the FODMAPS diet with little success and resorted to immodium, and RX Bentl. In May the pain was so bad, my GI did an upper endoscopy and a colonoscopy with biopsies. I have LC, which was a shock, but at least I know what I am dealing with. I have been on Lialda for 2 and 1/2 months with varying success, but in the last few weeks things have gotten worse...and then I found this board!!!
My diet has been "cautious", but not ideal from all I have been reading. Very little fruit, cooked veggies, no beans, no tomato sauce, no dairy, limited gluten~ which I thought would be OK since I had been tested for Celiac Spru. I avoided what I thought I had reacted to, but I see I may have missed the boat.
Today I started entocort, (and stopped the Lialda) because it is just so bad, and I have a trip planned in 2 weeks that I can't imagine going on with relief... but I hope to get my diet in order and get off when the time is right. I see there is so much to learn, and I appreciate finding this board and reading all your stories and successes. The failure stories are comforting as well, because it keeps us human, and encourages me to pick myself up and try again.
I hope the entocort works for now, and I will keep reading!!
Warmly,
Lori
Nice to meet you
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Lori,
Welcome to our internet family. You are correct — the mainstream medical community has absolutely no way to test for the early stages of celiac sprue, or non-celiac gluten sensitivity. They can only diagnose fully-developed celiac disease. That's why the average time from first symptoms to an official diagnosis of celiac sprue is still 9.7 years in this country. That's a ridiculously long time to have to suffer, simply because the guys in the white coats can't seem to get their ducks in a row.
The sad part is that they do their patients a cruel injustice by telling them that because the blood tests that they use almost always show a negative result for celiac disease, that automatically rules out gluten sensitivity. In reality, it doesn't rule out anything, not even celiac disease. It simply shows that a patient doesn't have fully-developed celiac disease at the time of the test. That's not saying much.
You seem to be on the right track now. Assuming that you are now avoiding gluten 100%, with any luck at all, and with the help of Entocort to mask your symptoms until the diet has time to promote some healing, you should be able to make that trip scheduled in a couple of weeks with a minimum amount of trouble from your LC. It will take a long time for your digestive system to heal from the damage caused by the inflammation, but in the meantime the Entocort should mask your symptoms, to make life much easier.
I like your attitude (regarding both stories of success and stories of failure). This disease tries to take over our life, but by putting our heads together, and comparing notes, each of us can work out a personal treatment program that will allow us to get our life back.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. You are correct — the mainstream medical community has absolutely no way to test for the early stages of celiac sprue, or non-celiac gluten sensitivity. They can only diagnose fully-developed celiac disease. That's why the average time from first symptoms to an official diagnosis of celiac sprue is still 9.7 years in this country. That's a ridiculously long time to have to suffer, simply because the guys in the white coats can't seem to get their ducks in a row.
The sad part is that they do their patients a cruel injustice by telling them that because the blood tests that they use almost always show a negative result for celiac disease, that automatically rules out gluten sensitivity. In reality, it doesn't rule out anything, not even celiac disease. It simply shows that a patient doesn't have fully-developed celiac disease at the time of the test. That's not saying much.
You seem to be on the right track now. Assuming that you are now avoiding gluten 100%, with any luck at all, and with the help of Entocort to mask your symptoms until the diet has time to promote some healing, you should be able to make that trip scheduled in a couple of weeks with a minimum amount of trouble from your LC. It will take a long time for your digestive system to heal from the damage caused by the inflammation, but in the meantime the Entocort should mask your symptoms, to make life much easier.
I like your attitude (regarding both stories of success and stories of failure). This disease tries to take over our life, but by putting our heads together, and comparing notes, each of us can work out a personal treatment program that will allow us to get our life back.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
