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Diagnosed With Celiac And Ulcerated Colitis Has Anyone Ever Been On Asacol? Please Tell Me This Will Get Better

WitchyWoman

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WitchyWoman Rookie
WitchyWoman
Posted

Just got back from John Hopkins and received the formal diagnosis of Celiac and Ulcerated Colitis, diverticulitis, IBS and severe infection in stomach and intestines. They stated that they need to address the Ulcerated Colitis first with Asacol...... has anyone else been on this? They have me taking 800 mg 3 times a day for 4 months. They suggested the gluten free diet and stated that once the ulcerated colitis is under control, then they will deal with the infections.

I am really bummed and really could use some support. Good news was the DR. is going to write a letter to my insurance company(Blue Cross Blue Shield) to insist that they cover the cost of me seeing a dietician since it isn't just one diagnosis. So hopefully they can help me figure out what I can and can not eat. I guess I am just feeling very overwhelmed right now and need assurance that it will get better. I am so sick and tired of being sick and tired!! :(

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tictax707 Apprentice
tictax707
Posted

I've been on asacol since about 2003 ish. It's worked really well for me. It did take a while for me to learn how to treat my body during a flare up, but now that I know, things are under much better control now. Once you get the colitis improving, you will feel much much better. Let me know how it goes with the dietician. I have blue cross too and they don't cover it unless I am obese or diabetic. (of which I am neither). Believe me, I KNOW your boat. the celiac mixed with the colitis is a double doozie, but I can honestly tell you that it WILL get better. You've just got to be very nice to yourself and your body and try to listen to what it tells you. I spent a lot of time in "denial" of the colitis when it would flare up, and in retrospect that was just a silly waste of time. Sending you little cyber rays of sunshine...!!! :):)

zus888 Contributor
zus888
Posted

I was once diagnosed with ulcerative colitis, but, apparently it was actually crohns (or maybe after many years, turned into crohns). I am on asacol and it makes a tremendous difference. I seem to react very positively to steroids and asacol (steriods being a whole separate issue here). Anyway, I was so bad that I needed the steroids initially to help me to heal, and then got off of them and remained on asacol. I was properly diagnosed in 1994, started the new meds and have been getting better since. My disease is different from yours, and you have a different body than I do, so your response may or may not be the same. I can say that my last scope showed very healthy intestines. I don't even think they found any signs of crohns for my last biopsy. HOWEVER, if I'm off the asacol for any length of time, things slowly start to take a downturn, so I KNOW it's working. Asacol is safe to take - even during pregnancy.

If you DO NOT respond well to the asacol, please communicate with your doctor. There are other options out there, though I think that one is one of the best ones. Also, asacol might not give immediate results. For me, it works slowly and steadily and does an amazing job at maintaining a healthy gut.

If you have an infection, then you have a longer way to go in the healing process. Don't give up. It's just going to take some time. I'm assuming they don't have you on steroids because of the infection (steroids suppresses the immune system and carry with them a whole host of very nasty side effects).

Good luck! I trust now that you have some answers, you can start working toward getting healthy again.

twe0708 Community Regular
twe0708
Posted

Just curious if all of you had bad diarrhea? I have microscopic colitis and my doc wants to put me on Entocort but I don't have D. Also, is it recommended that you have another test done to check your villi after going gluten free?

Nor-TX Enthusiast
Nor-TX
Posted

I have UC, IBS-C, Gluten and Dairy free, GERD, and Gastro-Paresis... lots of tummy issues. I have been on Asacol for 6 years and Remicade for 5 years. I have been dairy free forever and gluten free for 2 years. As your colitis improves with the Asacol, you will find that you feel so much better. Sometimes I can't tell where the colitis stops and the gluten issues begin. I find that when my colitis feels pretty good, then it is easier to deal with the gluten and dairy issues. When I eat safely, my colitis is good... like the rat running in a wheel.

Hope you feel better soon.

I also have BCBS and no, they don't cover dietitians. The asacol is expensive - 200.00/3 months at 12/day.

You might want to speak to the doctor about Remicade too. It gave me my life back. Asacol can only do so much. It is a pretty benign drug - you can take it if you are pregnant too. With the Remicade and Asacol and a gluten free diet, I live a pretty good life. Good luck!

zus888 Contributor
zus888
Posted

Just curious if all of you had bad diarrhea? I have microscopic colitis and my doc wants to put me on Entocort but I don't have D. Also, is it recommended that you have another test done to check your villi after going gluten free?

I did have very bad diarrhea.

I'm probably having another test after about 12 months gluten-free because there is a possibility that my villous blunting is not due to celiac. My blood tests were normal (save for the gliadin IgG, which was a weak positive). The only way for me to know for sure at this point is by going on the diet and getting another endoscopy. If the villi are healthy again, we can say with a great deal of certainty that I do have celiac. If not, then we'll have to look into the other intolerances and likely lymphoma and carcinoma and crohns. Here's hoping it's *just* celiac.

WitchyWoman Rookie
WitchyWoman
Posted
  • Author

I've been on asacol since about 2003 ish. It's worked really well for me. It did take a while for me to learn how to treat my body during a flare up, but now that I know, things are under much better control now. Once you get the colitis improving, you will feel much much better. Let me know how it goes with the dietician. I have blue cross too and they don't cover it unless I am obese or diabetic. (of which I am neither). Believe me, I KNOW your boat. the celiac mixed with the colitis is a double doozie, but I can honestly tell you that it WILL get better. You've just got to be very nice to yourself and your body and try to listen to what it tells you. I spent a lot of time in "denial" of the colitis when it would flare up, and in retrospect that was just a silly waste of time. Sending you little cyber rays of sunshine...!!! :):)

Thank you so much for posting!!!! It helps to know someone else has gone through this and that there is an end to tunnel!!!

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WitchyWoman Rookie
WitchyWoman
Posted
  • Author

I was once diagnosed with ulcerative colitis, but, apparently it was actually crohns (or maybe after many years, turned into crohns). I am on asacol and it makes a tremendous difference. I seem to react very positively to steroids and asacol (steriods being a whole separate issue here). Anyway, I was so bad that I needed the steroids initially to help me to heal, and then got off of them and remained on asacol. I was properly diagnosed in 1994, started the new meds and have been getting better since. My disease is different from yours, and you have a different body than I do, so your response may or may not be the same. I can say that my last scope showed very healthy intestines. I don't even think they found any signs of crohns for my last biopsy. HOWEVER, if I'm off the asacol for any length of time, things slowly start to take a downturn, so I KNOW it's working. Asacol is safe to take - even during pregnancy.

If you DO NOT respond well to the asacol, please communicate with your doctor. There are other options out there, though I think that one is one of the best ones. Also, asacol might not give immediate results. For me, it works slowly and steadily and does an amazing job at maintaining a healthy gut.

If you have an infection, then you have a longer way to go in the healing process. Don't give up. It's just going to take some time. I'm assuming they don't have you on steroids because of the infection (steroids suppresses the immune system and carry with them a whole host of very nasty side effects).

Good luck! I trust now that you have some answers, you can start working toward getting healthy again.

Thank you for your post..... They wanted to put me on steroids but said it would put more weight on. I have already ballooned with all of this so they decide to try the Asacol and see if it will do the job

WitchyWoman Rookie
WitchyWoman
Posted
  • Author

Just curious if all of you had bad diarrhea? I have microscopic colitis and my doc wants to put me on Entocort but I don't have D. Also, is it recommended that you have another test done to check your villi after going gluten free?

Since my surgeries, I have 8-10 bouts of D on a good day... bed and bathroom ridden on bad days

WitchyWoman Rookie
WitchyWoman
Posted
  • Author

I have UC, IBS-C, Gluten and Dairy free, GERD, and Gastro-Paresis... lots of tummy issues. I have been on Asacol for 6 years and Remicade for 5 years. I have been dairy free forever and gluten free for 2 years. As your colitis improves with the Asacol, you will find that you feel so much better. Sometimes I can't tell where the colitis stops and the gluten issues begin. I find that when my colitis feels pretty good, then it is easier to deal with the gluten and dairy issues. When I eat safely, my colitis is good... like the rat running in a wheel.

Hope you feel better soon.

I also have BCBS and no, they don't cover dietitians. The asacol is expensive - 200.00/3 months at 12/day.

You might want to speak to the doctor about Remicade too. It gave me my life back. Asacol can only do so much. It is a pretty benign drug - you can take it if you are pregnant too. With the Remicade and Asacol and a gluten free diet, I live a pretty good life. Good luck!

Is the price of Asacol utilizing insurance? I think I need to get a second job just to afford my meds and gluten free foods!!! lol Are there any foods you need to stay away from due to the UC?

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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