• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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:
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
Ads by Google:


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
      107,344
    • Total Posts
      935,616
  • Member Statistics

    • Total Members
      65,022
    • Most Online
      3,093

    Newest Member
    Mandysue
    Joined
  • Popular Now

  • Topics

  • Posts

    • Why not give up supplements for a while?  Not everyone is deficient in vitamins and minerals -- or at least dangerously so.  Ask your doctor to check.   I take no supplements.  My doctor runs a vitamin panel at my yearly check-up.   I do make sure my diet is healthy and varied -- like eating veggies even at breakfast!   People who are gluten free and eat junk food will probably need supplements.   Look to your diet, lotions, shampoo....anything you can swallow to see if you are getting gluten into your diet.  That is most likely the cause of your recent symptoms.  At least rule out that you are having a celiac flare-up.  
    • So to repeat, you will have to do a gluten challenge which is 12 weeks of eating 1 slice of bread per day for the blood tests or 2 weeks of gluten eating for an endoscopy.
    • I'm celiac for less than 3 months.   I'm starting to get concern about getting all the necessary vitamins being gluten free.   Recently my joint pain has increased, pulsating pain in my head, and sore areas in legs and neck have started recently.  Or course, anxiety too. I'm currently taking a Centrum Men's Multivitamin.  Here's what in it: Vitamin A 3,500 IU (29 % as Beta - Carotene)  70%
      Vitamin C 90mg  150%
      Vitamin D 1,000 IU  250%
      Vitamin E 45IU  150%
      Vitamin K 60mcg  75%
      Thiamin 1.2mg  80%
      Riboflavin 1.3mg  76%
      Niacin 16mg  80%
      Vitamin B6 2mg  100%
      Folic Acid 200 mcg  50%
      Vitamin B 126mcg  100%
      Biotin 40mcg  13%
      Pantothenic Acid 15mg  150%
      Calcium 210mg  21%
      Iron 8 mg  44%
      Phosphorus 20 mg  2%
      Iodine 150mcg  100%
      Magnesium 100 mg  25%
      Zinc 11mg  73%
      Selenium 100mcg  143%
      Copper 0.9mg  45%
      Manganese 2.3mg 115%
      Chromium 35mcg  29%
      Molybdenum 50mcg  67%
      Chloride 72 mg  2% Potassium 80 mg  2%   I really can't believe after being diagnoses that my doctor didn't get me a list of recommend supplements to include the vitamin deficiencies by not having gluten in my diet.   Everyone has to do it on their own. I don't really want to avoid taking a bunch of pills in the morning if I can.   But I'm concerned I'm not getting enough Magnesium and Iron.   Other too? Any recommendations of supplements to increase what I'm currently taking.   Or just on supplement that includes everything I need? Thx.            
    • As far as the grey hair goes, I understand how you feel as I started going seriously grey in my mid 20's also.  As cyclinglady stated, there is nothing you can do about that except color you hair or live with the grey hair.  I chose to color it. Grey hair is generally either a genetic thing or it can be the result of vitamin deficiencies or illness.  It also can't be reversed, which would be heavenly, I agree! You definitely need a full  thyroid panel done because you cannot diagnose Hashi's on antibodies alone.  I have Hashi's so know the drill.  No doctor should tell people to just go gluten free without some level of testing for Celiac.  Those with Hashi's can benefit greatly from going gluten free but that is because those that it helps noticeably also probably do have full blown Celiac.....without Celiac or non-Celiac gluten sensitivity, the gluten-free diet won't help. The supplement you mentioned is just that....a supplement.  If you do have true Hashi's, you'll need more than that to help keep thyroid function normal for you.  I think you need to see another doctor because your doc is missing the boat here.  You really should have a full thyroid panel done and a full Celiac panel.  It is important to diagnosis (or not) these 2 conditions early so you won't have more problems down the road.  Can you request more blood work?
    • Lotions used topically are not a concern at all unless they contain gluten and you ingest them into your mouth.  Gluten has to get into your GI tract, (which begins in your mouth) for damage to occur.  Ditto for hair care products.  As most salons have you bend your head back into a sink to wash, the odds of any shampoo or conditioner getting into your mouth are slim to none. If you shower and let the soap and water run down your face, then make your home shampoo/products gluten free.  
  • Upcoming Events