Heading to mayo clinic

Englejor001 · Post by **Englejor001** » Thu Jul 16, 2015 7:57 am

Hi all I was diagnosed with lymphocytic colitis about two months ago. Unfortunately where I live there are really only two gi specialists and it took me a month after my colonoscopy to see my doctor. I've been on entorcort for 7 weeks now and it hasn't worked since the first week for me. My doctor told me to stop taking my Prilosec (which unfortunately means my gerd is back with avengence) and to start taking citracel (a fiber bulking laxative which seems to help bind me up for some reason). I get these severe doubling over pains more so in my right side. Two weeks ago it sent me to the er. My doctor does not know what else to do for me so he referred me to mayo clinic up in Rochester. I go to that on Monday and am excited to hopefully get answers! I have had diarrhea for over a year now. In 2012 at age 19 I was hospitalized with what they thought crohns and it turned out to be ischemic colitis. Last year I also had my gallbladder removed due to biliary dyskinesia. No gallstones or history of gallstones. Kind of weird I get random inflammation! The doctors are thinking it is autoimmune. No diet seems to help me but I hope to share what mayo's advice says next week!

Polly · Post by **Polly** » Thu Jul 16, 2015 8:06 am

There's a good chance you may have bile acid malabsorption, especially with your GB removed. It is treated with a sequestrant like Cholestyramine. Many docs don't consider it in the differential diagnosis, so be sure to ask about it. Good luck, and let us know what happens.

Polly

Englejor001 · Post by **Englejor001** » Thu Jul 16, 2015 8:09 am

Thank you for the reply! I was on cholesystyramine (questron) for over 2 months and it did not work! The doctors decided it was doing more harm than good and took me off of it since it didn't help with my diarrhea at all!

Post by **tex** » Thu Jul 16, 2015 9:01 am

Hi,

Welcome to the discussion board. If you were eating gluten during the time you unsuccessfully tried Entocort, then that may be the reason why Entocort was ineffective for you. For many of us, Entocort is not capable of overcoming the inflammation generated as a result of the anti-gliadin antibodies produced in response to gluten.

Also, Entocort will not work if your vitamin D level is very deficient. Vitamin D deficiency predisposes to the development of IBDs (including MC). In addition, IBDs (including MC) deplete vitamin D. Unless we are taking a significant vitamin D supplement, most of us are vitamin D deficient. Corticosteroids work by expressing vitamin D receptors. The receptors are then activated by the active form of vitamin D, which suppresses the inflammation. If insufficient vitamin D is available, then nothing happens, and the inflammation continues.

A better substitute for Prilosec would be an H2 blocker, such as Tagamet, Pepsid, or Zantac. The Citracel was presumably recommended to help control diarrhea, but it doesn't address the acid reflux issue.

Have you ever used sumatriptan (for the treatment of migraine headaches)? 5-HT 1 receptor agonists are generally considered to be safe for most people. However, ischemic colitis is a potential side effect of these medications.

Your issues are definitely autoimmune, and the lion's share of all autoimmune issues can be traced back to untreated gluten sensitivity. And please be aware that the celiac blood tests used by most doctors to screen for gluten sensitivity are so insensitive that they will only detect fully-developed celiac disease. They will not detect early stages of celiac disease (anything less than full delopment), nor will they detect the non-celiac gluten sensitivity that most of us have, associated with MC.

Again, welcome aboard, and please feel free to ask anything.

Tex

Tor · Post by **Tor** » Thu Jul 16, 2015 3:47 pm

How large was your cholestyramine dose? I have CC and borderline bile acid malabsorption. I used to need 16 g of cholestyramine (4 packets of Questran) to keep the CC/BAM at bay. After going both GF and DF for some months I'm down to 8 g a day. Just be sure that you try a large enough dose of cholestyramine. In my experience you need to pass a threshold for it to be effective. When it works, it seems like a far better option than budesonide.

Polly · Post by **Polly** » Thu Jul 16, 2015 5:29 pm

I was going to ask the same question Tor did. The dose usually does need to be increased to find the optimal dose.

Polly

crervin · Post by **crervin** » Thu Jul 16, 2015 8:50 pm

just curious how you know if you have a bile acid malabsorption issue? I have had my gallbladder removed also. Is there a particular test? thanks

Post by **tex** » Thu Jul 16, 2015 9:48 pm

Martha,

MC causes bile acid malabsorption (as a side effect) in roughly half of all cases. It typically resolves as the gut heals in response to the diet changes that we make. Some people treat it separately though, in an attempt to resolve the D sooner. Yes, there are tests available, but it's not particularly easy to diagnose. Most doctors will just prescribe a bile acid sequestrant, and if it seems to help, then it's assumed that the patient has bile acid malabsorption. You can find detailed information on the condition in the article at this link:

http://www.medicine.virginia.edu/clinic ... Oct_12.pdf

Tex

Gabes-Apg · Post by **Gabes-Apg** » Thu Jul 16, 2015 11:09 pm

When you say 'no diet seems to help me'
what sort of eating plan did you follow?

It can take quite a few months for the gluten antibodies to leave our bodies, and symptoms will only reduce once you eliminate/minimise most of your major triggers. (major triggers generally being Gluten, Dairy, Soy, Eggs, Fibre, excess fruit/sugar)

We recommend a bland, low inflammation, well cooked, low fibre eating plan.
Focus on good serves of good animal protein and well cooked 'safe vegetables'.

If you read the posts aimed at newbies, and subsequent discussions you will see what we mean...

crervin · Post by **crervin** » Fri Jul 17, 2015 9:14 am

Thank you Tex, will check on this with Dr!

Polly · Post by **Polly** » Fri Jul 17, 2015 9:23 am

Martha,

You might want to check out a post I wrote this morning, titled "A New Way to Look at MC" for more info on bile acid malabsorption.

Polly

Englejor001 · Post by **Englejor001** » Fri Jul 17, 2015 9:06 pm

Thank you all for the replies!! I was taking 3 scoops of questron a day for two months. I did not know all of this information regarding diet and vitamins so it is nice to have more knowledge and some things to try! Again thank you all so much! My doctor where I live has not even defined lymphocytic colitis for me as he has not really heard of it so all the information I was getting was from the mayo website. This is so much more helpful! Thanks again!

Gabes-Apg · Post by **Gabes-Apg** » Fri Jul 17, 2015 9:12 pm

If you do a search of the forum for the word 'Mayo' you will see previous discussions about this.

From memory, thus far I dont think we have had any reports of anyone getting benefit/improvement from attending Mayo Clinic.