Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Diagnosed With Celiac And Ulcerated Colitis Has Anyone Ever Been On Asacol? Please Tell Me This Will Get Better
0

10 posts in this topic

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!! :(

1

Share this post


Link to post
Share on other sites


Ads by Google:

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...!!! :):)

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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!!!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,145
    • Total Posts
      919,571
  • Topics

  • Posts

    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,177
    • Most Online
      1,763

    Newest Member
    lolobaggins
    Joined