I'm a Newbie

[Omilly1017]

Hi everyone. I have been lurking for a few days, just reading and absorbing information. So much to learn.
Here is my story....
I was diagnosed with CC a couple of years ago, and my GI doctor has been treating me with Budesonide. I have unsuccessfully tried to wean off of it a couple of times, hoping to achieve remission, but each time I find myself in a flare up with uncontrollable D.

I visited my GI doctor yesterday, and after reading how gluten and other foods can cause so much havoc for MC patients, I asked her for guidance in determining if diet changes or an elimination diet would help with the flare-up. She actually was almost shouting at me that "MC has absolutely nothing to do with anything in the diet. It is strictly an auto-immune disorder." I just listened and she proceeded to tell me that I obviously am not a candidate for complete remission, since I keep relapsing when decreasing the dose of the Budesonide. She suggested I up the dose once again to the max (9 mg/day) for two months, and then decrease to 6 mg/day -- where she said I will probably have to stay for a maintenance dose for the rest of my life. I was appalled, but didn't push it any more. I got a prescription refill and immediately went to the InteroLab website to check out the antigen testing.

I ordered the testing for A1 and C1 panels, and I hope to receive it soon. I am so ready to find out if diet changes will help me overcome these debilitating symptoms.

I have a couple of questions on the tests for those who have gone through this process. There are are about 15 different tests -- and some of those foods I have taken out of my diet for quite some time (i.e. I haven't eaten potatoes, corn, rice, or nuts in a long time). Will these foods show up as negative if I haven't ingested them recently - even if I truly am sensitive to them? Just wondering if I need to ingest a small amount in order to get a true reading on the testing.

I am also curious if anyone has had any luck finding a GI doctor who is working with them in this process. I know that Dr. Fine at EnteroLab is trying to get the message of his unique testing out to other doctors. Is there a listing of doctors who work with him and his lab? I didn't see anything on the website. I am a Snowbird and I reside in Florida in the winter -- and in Minnesota in the summer months. I would love to find a GI doctor who will work with me -- and not just push pills to manage the symptoms. I have a call into the Mayo Clinic in Minnesota as I see they have MC listed as a specialty. But I'm not sure if I will run into the same mentality as my current GI doctor here in Florida. Open for any suggestions please.

I'm glad I found this support group -- I'm sure I will be having lots of questions along the way. Thanks in advance for any guidance.

[tommyboywalker]

Hi Omilly and welcome to the forum!

I agree that your prior Gastroenterolotist is quite clueless when it comes to Microscopic Colitis. Which unfortunately isn't that unusual.

I live in central Minnesota and was very lucky and landed with a doctor who understands the importance of diet in controlling MC. His name is Dr. James Wise. When I saw him, he was with CentraCare in St. Cloud MN but now is with the University of MN Fairview......I just checked and he is accepting new patients. I would seriously consider seeing him, I don't "highly recommend" doctors that often but I do so without pause for Dr. Wise.

Dr. Wise trained under the "guru" of Microscopic Colitis at the Mayo Clinic in Rochester, Dr. Darrell S. Pardi, who by the way is also accepting patients. So if you go to the Mayo in Rochester, I don't think you could do better than Dr. Pardi. And in the Mpls area, see Dr. Wise. Dr. Pardi has a video or two on YouTube where he is teaching other doctors about MC, watch them. When I saw Dr. Wise, we basically adopted the protocol from Dr. Pardi (no need to reinvent the wheel) and that protocol has served me very well.

My MC strategy is this. No gluten, no dairy, low fat, low sugar, minimal processed food, smaller meals, and chew your food well. Everybody is a bit different on what food they are sensitive to and whatever protocol elements work for them. I used Enterolab and found it to be very accurate in their test results. And like you, I successfully used Budesonide to jumpstart my healing initially and after a relapse (stress related), I used the drug again to get into remission. I used a very long slow taper which seems to work the best. Both times that long slow taper ended up at a point where I am pretty much symptom free and no longer taking the drug.

There is a lot of good information on this forum, check it out closely and you will learn a lot! And one more thing, definitely get Tex's book on Microscopic Colitis, he is the main dude on this forum that we all owe a debt of gratitude to. All the best to you and please keep us updated!

[tex]

Hi Omilly,

After that great response, I can't add much. I agree that your doctor was way off base by insinuating that your case was unusual when you relapsed after the budesonide treatments ended. In fact, published medical research proves that 85% of MC patients relapse after their budesonide treatment Is ended. Changing your diet early on when a budesonide treatment is begun, and using a very slow taper as the treatment is ended, is the key to avoiding a relapse. The diet changes will Allow your digestive system to heal, while the budesonide masks your symptoms.

Regarding the EnteroLab testing, it's difficult to say whether avoiding certain foods will matter for the test results. That may depend on a lot of factors, not the least of which is how long you've been avoiding them, and whether or not they were causing your immune system to produce antibodies when you were eating them. In other words, some people find that after they've been avoiding certain foods for years, their immune system may have forgotten about them, so they'll get a false negative result on some of the tests. For other individuals, especially those who have shorter avoidance times, it doesn't seem to matter much. I believe Dr. Fine normally recommends that you shouldn't alter your diet before using the tests.

I hope this helps. Please feel free to ask anything.

Tex

[Omilly1017]

Thanks to both of you for your quick responses.
I am so optimistic reading the success stories on this support site.
I have purchased Tex's book and have been reading that as well. Thanks again for all the great information.

[LisaG]

Hi to all, and thanks for this forum and the help and comfort it provides.

My story is like so many others here, (LC diagnosis in January) but I do feel fortunate that my gastro prescribed budesonide. I've been doing well on 9 mg daily for the last 3 months. Now she wants to taper - I agree - but she wants me to take 6 mg for 2 weeks then 3 mg for 2 weeks. Does that seem reasonable to those who have tapered their budesonide dose? Seems quick to me after so long at 9 mg.

I did EnteroLab testing and have been GF/DF/SF the last 3 months so I am hopeful that the dietary changes are making a difference. But I don't want to jeopardize my progress.

Thanks for any insight, I appreciate you all.

Lisa

[tex]

Hello Lisa,

Welcome to the group. I see that no one has responded to your question, so I'll try to answer it. Here's the most effective way to end a budesonide treatment that we have found, in order to minimize the risk of a relapse:

The secret to staying in remission after ending a budesonide treatment is to wean off very slowly. Following the taper that doctors recommend frequently results in a relapse (even if you've made the necessary diet changes). Without the corect diet changes, published research shows that the relapse rate is 85%. To avoid a relapse, spend at least two or three weeks at each dose level. But don't stop at one capsule per day. Go to one capsule every other day, then one every third day, one every fourth day, one every fifth day, etc. Some members here go as far as one capsule per week, and they stay on each level for a week or two, or more. The slower you taper, the better the odds that that you'll be able to remain in remission. Some people begin taking a daily antihistamine tablet or capsule when they finally end the budesonide treatment, and continue for a couple of weeks or so if they feel that they need additional support. An antihistamine in this situation can be almost as effective as budesonide. If you relapse after a slow taper, there's almost surely a problem with your diet (or a medication you're taking).

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

Tex

[LisaG]

Thank you Tex. Will follow your advice for the taper and report back in a few months.

Lisa