Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Microscopic Colitis


twe0708

Recommended Posts

twe0708 Community Regular

I was told over a year ago I have microscopic colitis. Not sure why the doctor didn't treat me for it, but a new doctor I went to see today gave me a prescription for Entocort 3MG - 3 capsules in the morning for 30 days. Has anyone else been treated for this and did they use this medicine?

I need to add that I don't have D or problems with being constipated. The only thing I am experiencing is loose stools. Just trying to figure out if taking a medication that could cause other problems is worth it?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nurse93 Newbie

I was diagnosed with microscopic colitis in October of 2009. I was also put on Entocort 9mg daily. I had suffered from loose stools an D for about four weaks and ended up in the hospital for three days for dehydration and malabsorbtion. The Entocort helped immediately within 24 to 48 hours. I took it for 8 weeks and then was weened off of it. After two months off of entocort the loose stools and D returned. Then I was put on Pepto Bismol 2 tabs 4 times a day for 8 wks. Again the stools returned to normal. All the while I researched MC and found that up to 80% of those with MC are gluten intolerent or have celiacs. I asked my GI to test for celiacs, he said it wasnt necessary because I had a diagnosis of MC and initially responded to treatment. The more I read about MC and celiacs I was convinced I had it. Fast soward to August 2010, I was told I needed open heart surgery to replace aortic valve. I told my GI doc I wanted to be tested for celiacs because it would have a major impact on the valve I would choose. He reluctantly agreed. 4 days before my scheduled surgery the GI doc called and confirmed I had celiacs. I forgot to mention I had endoscopy while in the hospital for MC which showed damage to villi they said was gastritis. Sorry for the long post but I just wanted to let you know that the docs arent always right. My GI has now begun testing his MC patients for celiacs. Also I was sent to cardiac specialist and the surgery was cancelled for now. I dont know which was worse, facing open heart surgery or being diagnosed with celiacs. Hope this helps.

twe0708 Community Regular

I was diagnosed with microscopic colitis in October of 2009. I was also put on Entocort 9mg daily. I had suffered from loose stools an D for about four weaks and ended up in the hospital for three days for dehydration and malabsorbtion. The Entocort helped immediately within 24 to 48 hours. I took it for 8 weeks and then was weened off of it. After two months off of entocort the loose stools and D returned. Then I was put on Pepto Bismol 2 tabs 4 times a day for 8 wks. Again the stools returned to normal. All the while I researched MC and found that up to 80% of those with MC are gluten intolerent or have celiacs. I asked my GI to test for celiacs, he said it wasnt necessary because I had a diagnosis of MC and initially responded to treatment. The more I read about MC and celiacs I was convinced I had it. Fast soward to August 2010, I was told I needed open heart surgery to replace aortic valve. I told my GI doc I wanted to be tested for celiacs because it would have a major impact on the valve I would choose. He reluctantly agreed. 4 days before my scheduled surgery the GI doc called and confirmed I had celiacs. I forgot to mention I had endoscopy while in the hospital for MC which showed damage to villi they said was gastritis. Sorry for the long post but I just wanted to let you know that the docs arent always right. My GI has now begun testing his MC patients for celiacs. Also I was sent to cardiac specialist and the surgery was can

Thanks for the information. I was dx with celiac over a year ago. Just want to double check - you aren't thinking that the medication they gave you affected your aortic valve, are you? Are you good now, or are you still having problems with MC? I hate taking medication for one thing when it can cause 10 other problems and if I am only going to be right back wher I started from in 3 months, what's the point of taking something that will not work in the long run? And believe me do I know what you mean about doctors not always being right. Mine has tried many times to get me to take meds that I didn't need and didn't take so I make sure I do my homework!

nurse93 Newbie

No the heart problem started in 2008. What iam saying is the entocort helped me alot the first time I took it. With MC you can go into remission for weeks, months or even years without another flare. When i was diagnosed with celiac I had not had any more problems with the MC. I started the gluten free diet and within two weeks the MC flared again. Ith was very frustrating. I thought the diet would resolve both problems. I was put back on Entocort for 8 more weeks and again it helped immediately, however about a month after weening off the stools became loose again. I also have high blood pressure and the entocort increases the blood pressure. i had to to take more BP meds while on on it. I did not have any other side effects from it. Now I am taking sulfasalazine for the MC. 1000mg twice a day. The MD did not want to put me back on the entocort because of the high BP. Sulfasalazine is an anti-immflammatory med with few side effects so I can stay on it longer if needed. I am now six months gluten free and my celiac blood levels have returned to normal. I am still on the sulfasalazine with no side effects and normal BM's for last two months. The docs said I should be able to lower the dose and then discontinue the med soon. Some people never have problems again after the entocort therapy. There is a MC forum with lots of info on this subject. I dont know the web address of the top of my head, but you can google it and it will come up.

twe0708 Community Regular

No the heart problem started in 2008. What iam saying is the entocort helped me alot the first time I took it. With MC you can go into remission for weeks, months or even years without another flare. When i was diagnosed with celiac I had not had any more problems with the MC. I started the gluten free diet and within two weeks the MC flared again. Ith was very frustrating. I thought the diet would resolve both problems. I was put back on Entocort for 8 more weeks and again it helped immediately, however about a month after weening off the stools became loose again. I also have high blood pressure and the entocort increases the blood pressure. i had to to take more BP meds while on on it. I did not have any other side effects from it. Now I am taking sulfasalazine for the MC. 1000mg twice a day. The MD did not want to put me back on the entocort because of the high BP. Sulfasalazine is an anti-immflammatory med with few side effects so I can stay on it longer if needed. I am now six months gluten free and my celiac blood levels have returned to normal. I am still on the sulfasalazine with no side effects and normal BM's for last two months. The docs said I should be able to lower the dose and then discontinue the med soon. Some people never have problems again after the entocort therapy. There is a MC forum with lots of info on this subject. I dont know the web address of the top of my head, but you can google it and it will come up.

Good to know. Thanks for all the information!

willabec Contributor

Good to know. Thanks for all the information!

i have both celiac (diagnosed 2001) and now diagnosed with mc in november 2010....was put on a prednisone for a brief period and then started entocort - 3 pills a day.....it seemed to help for about a month and then things kind of started going down hill....then after another month dr. put me on asacol 800 mg hd- 1 pill 3 times a day....i did some research and i think the recommended dosage is 2 pills 3 times a day. i am switching drs....going to get a second opinion on tues. we shall see what the new dr. says.maybe just switching to the recommended dosage of the asacol will help me. good luck! any other questions, feel free to ask.

Streetlegal Apprentice

I was diagnosed with microscopic colitis 6 months after being diagnosed with celiacs--basically I wasn't getting better on the gluten-free diet.

My consultant told me there was no treatment for MC. I occasionally turn to Pepto Bismol when I am particularly bad. I have found lately that taking Metamucil--and a diet of high soluble fiber generally--may give some relief and regularity.

Don't know about you guys, but I NEVER know whether I have been glutened because I am continually vulnerable to bouts of diarrhea and loose stalls due the MC!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.