Need advice re: flares, functional med dr, IBD-AID,anxiety

[Meggie1129]

Hello all - I was first on this board in Sept 2015 when I was diagnosed. I am now 38 years old. For the first two years after taking a course of Budesonide I was in remission. Was GF the first year, second year reintroduced, then at the end of the second year flared again. Was able to subside with pepto and going GF again, flared 6 months later, peopto again, worked, but then ever since then have been having flare-ups every 3-4 months. I am GF, avoid dairy 95% of the time, avoid corn, soy, low sugar, etc. When I am not flaring and I do know that I have something that has dairy or soy or corn, I do not have any reaction whatsoever. Even the times I have accidentally had gluten no side effects either.

I started flaring again at end of May and finally did another course of Budesonide because I was going to be on an 11 day theme park and national park trip without many options for bathrooms! I am currently at 3 mg and my GI wants me to stay at 3 through the end of October. He also started me on COlestipol to try that as a maintenance drug for when I am off the Budesonide.

I really, really do not want to be on medication. I am very careful with my diet. I went and saw a functional medicine dr this week, highly recommended, and she wants me to take $450/month of three supplements: medical food called UltraGiReplenish, a what seems like an extrememly expensive fish oil called Metagenics SPM Active, and a bovine product called SBI Protect. This is in addition to the Vitamin D, Renew Life probiotic, magnesium, calcium, slippery elm I already take. SHe is having me remove the turmeric and l-glutamine too. SHe also wanted me to buy two more products, a Vitamin B and a different magnesium than I already use that costs another $70 total. She had me remove the L-GLutamine and turmeric I take.

I will be completely honest, this disease causes me so much anxiety. I already have had very disordered eating patterns in the past and border on orthorexia. I truly question whether my flares have a lot to do with stress because I know the past 18 months has been extrememly stressful in beginning a new job and with some major familial problems.

I am also working with some GI Health Counselors who work closely with GI Dieticians, and they tell me that most of their clients come in and are down to five foods and are paying hundreds of dollars a month in supplements, but they are worse off. They don't recommend the food sensitivity testing as the evidence is not there, and from what I have read I tend to agree. The functional med dr also wanted me to be completely gluten, dairy, corn, soy, sugar, alcohol free. Again, I am all about eating a very clean diet and making major restrictions, but when I lose the quality of life it makes the anxiety hundreds of times worse. I know many on this board can do that and want others to as well, but in my mind sometimes I feel like there has to be some level of moderation.

I also have been looking into the IBD-AID diet and speaking with a dr from UMass, but I know it does not allow things like rice, quinoa, potatoes, etc. All things that I can eat ok but if I do eat, do not reflect the goal of the diet.

I am kind of at a loss. I most definitely cannot afford to spend $480 a month on supplements. I was actually feeling really good about my health up to this week, sleeping well, tapering on the budesonide, no loose stools. Since I went on Monday I have slept like garbage the last two nights, my stomach has been very shaky, and my heart rate up.

Any advice of anything else I can do to stay off the Budesonide but not spend $480 month on supplements? I have read Tex's book and feel like I am already doing everything recommended.

[tex]

I am GF, avoid dairy 95% of the time, avoid corn, soy, low sugar, etc. When I am not flaring and I do know that I have something that has dairy or soy or corn, I do not have any reaction whatsoever. Even the times I have accidentally had gluten no side effects either.

Hi,

Sorry that you're having repeated flares. The last half of that quote (which I have bolded for emphasis) clearly defines why so many people allow themselves to be tricked and completely misled by gluten and other food sensitivities. They don't react immediately to an exposure, so they mistakenly assume that they're home free — IOW they assume that they don't have a sensitivity.

Unfortunately, not all food-induced MC flares begin with a prompt (and obvious) reaction. Some of us require repeated exposures in order to boost our antibody levels over the threshold at which a reaction is triggered. And after all those exposures, once a reaction is triggered, it usually automatically becomes an all out flare. The process is so subtle and insidious that it's rarely noticed.

In my opinion, you would be much better off spending $539 (or whatever the current cost might be) for an EnteroLab test (A1 + C1 Panels), than to spend even a dime on the supplements that your Dr is recommending. In general, we break out of flares by putting less in or mouths, not more. With your EnteroLab test results in hand, you will know what your food sensitivities are, so that you won't have to guess. Guessing usually results in avoiding foods that don't need to be avoided, and/or eating foods that should be avoided.

The last issue of the Microscopic Colitis Foundation Newsletter has an article on flares. You can download a copy at:

https://www.microscopiccolitisfoundatio ... 762370.pdf

Or you can read it online at:

https://app.robly.com/archive?id=3dfd5e ... f57&v=true

The quote below is from a post I wrote a few days ago in response to another member's post:

About one or two in a thousand members here claim that they can tolerate gluten (or some other food intolerance) after a while. But except for yeast and eggs, those claims appear to be a misrepresentation. They aren't intentional misrepresentations; those individuals just don't understand what has happened. It's possible to force (induce) your immune system to tolerate certain foods by eating a small amount each day, and slowly increasing the dose. That's called induced tolerance, and immunologists use it every day to train people's immune systems to tolerate certain foods that ordinarily cause them to react, including anaphylactic reactions.

But unfortunately, published research shows that if you test the lining of the small intestine of those individuals, It's still highly inflamed — their immune system is just ignoring the inflammation, so that they don't react. And as long as the intestines are inflamed, the heightened risk of developing additional autoimmune diseases, cancer, or whatever, continues.

I've even been able to do this myself. After I reached remission and healed for a year or so, I began to slowly add casein products (cheese and later ice cream) to my diet. Eventually, I could tolerate relatively large amounts of them with no digestive issues. But I noticed that I began to have osteoarthritis problems after a few months. The fingers of my right hand began to develop large, swollen joints, and they began to grow crooked and twisted. I ordered a casein test and found that my antibody level against casein was quite high. I immediately cut casein back out of my diet, and the symptoms faded away. The damage to my fingers wasn't reversed, but the osteoarthiritis stopped creating new damage.

The point is:

Even if we don't have a reaction from a food, if our immune system is generating antibodies to it, then eating it will guarantee the buildup of a low to medium background level of inflammation. That background inflammation is what makes our immune system super sensitive and ready to pounce at the slightest provocation. It makes us much more sensitive to everything else. If we happen to have an accidental gluten exposure, that background inflammation will often determine the difference between whether we have a short reaction or a full flare/relapse, for some of us.

Sorry, this post got a little long, but I believe it contains some valuable information for avoiding flares.

Tex

[brandy]

Hi Meggie,

Brandy here. If you look at my log in date you can see I've been at this disease about 10 years. Two years initial flare. Balance
in remission with one 9 month reflare.

What I"ve learned for me:

The 9 month reflare was very difficult for me. The stress really ratcheted up when I was in the reflare. Budesonide
was not an option (took it 4.5 months initially but bad side effects), cholystyramine worked but not an option
as it makes my throat swell shut, pepto works but I'd taken a lot in the past and I also was in a kidney scare so
did not want to take. I think I magically thought I would kick out of the flare.

What got me out of the reflare using no drugs:

1. Positive self talk. I'd been in remission for years in the past. I had to do positive self talk that I would get and
stay in remission.

2. Eliminating all supplements. This was very difficult as magnesium helps me sleep. I sat out in the sun for
20 minutes a day for D. Did transdermal magnesium (epsom salt baths or lotions). I can't remember what
I did for calcium. I probably did nothing for calcium for 2-3 days and then eased into Califia almond milk.

3. Few food regimen. I ate 5 foods day after day after day.

4. Stress relief, I set my cell phone alarm clock to go off every 2 hours and did a three minute meditation/prayer every 2 hours
throughout the day.

Once I implemented this protocol I had improvements within 3-5 days and within 2 weeks I was doing pretty
well. I don't think I would have kicked out of the flare while I was taking oral supplements.

Geez.....for 9 months I was in a watery D flare. I thought I would magically kick out of it. Once I set my
mind to things it did not take me long to get back into remission again.

I see you are taking or thinking of taking the following:

UltraGiReplenish, a what seems like an extrememly expensive fish oil called Metagenics SPM Active, and a bovine product called SBI Protect. This is in addition to the Vitamin D, Renew Life probiotic, magnesium, calcium, slippery elm I already take. SHe is having me remove the turmeric and l-glutamine too. SHe also wanted me to buy two more products, a Vitamin B and a different magnesium than I already use that costs another $70 total. She had me remove th

e L-GLutamine and turmeric I take.

To get off of the budesonide I'd get your vitamin D from sunshine, switch to transdermal magnesium or epsom salt baths
and figure out how to take your calcium. I'd eliminate all other supplements until you have a very good remission for
about 6 months.

When we are in a flare our digestion systems are like a babies. We feed babies gentle foods. We don't give babies supplements.

I currently take about 3 supplements but there is no doubt in my mind that I would not have kicked back into remission
while taking supplements. After you get back into a good remission you can add one supplement at a time. I don't take
any supplements that might help, i,e there has to be a good reason to take the supplement. Also, be aware
that supplements are unregulated in the US. There is no guaranty that what is on the label is what is in the supplement.

Agree with Tex, if you decide to spend the money spend it on the Enterolab testing.

I'm not a big believer in counseling but I did find it helpful this year. My 9 month flare was initiated by prolonged stress
and eating too many GF chips (over months). I also have a history of disordered eating. Anything you can
do to work on stress will be helpful. Tai chi, yoga, counseling, meditation, prayer, church etc. Some of the
popular self help books on stress and anxiety are good too.

At one time my boyfriend told me to stop seeing docs
as I wasn't improving and all they were doing was causing me anxiety. I struggling with MC and saw gastro, gyn
and PCP all in a 2 week period and was getting no hope from them and came home crying. Boyfriend told
me to stop seeing docs as they were causing me too much stress and not helping. I am not anti doctor and I would not
tell anyone not to see doctors of course.

Gluten ingestion did not cause my reflare. I'm pretty certain escalating inflammation in my body over months
of eating too many GF chips (eating junky) as well as stress over months caused a tipping point of heightened
inflammation in my body and the BOOM I was in my 9 month flare.

I'll try to link the success stories. They have a lot of positivity in them.

Best of luck. You've successfully got into remission in the past. You can do it again.

PS. You are very very brave for posting. I'm sure your post will help hundreds of folks. We don't get many folks
that say they tested gluten and went back on it. I think folks don't want to admit to it. One member posted
similar to your story right when i was getting off of budesonide and it made me realize that I should permanently
stay off gluten. Getting into remission is a hard battle, even with drugs.

[brandy]

https://perskyfarms.com/phpBB2/viewforum.php?f=71

Above is the success story thread. All are worth a read for inspiration.

[brandy]

If you don't already have Tex's book the link is in the upper right hand corner. It is available in kindle of hard copy version.
It is the only book on microscopic colitis in the world and worth the money.

Also, all of the newsletters on the foundation website are worth a read. Link is top middle.

[cfurer]

The only thing I would add to what's already been said is to make sure you are not just GF (grain free) but LF (lectin free). The lectins in grains which cause GI issues are also present in other plant foods like legumes (peanuts, beans, etc.), nightshades, many fruits, and seeds. The easiest way to go fully lectin-free is to go "carnivore" for a couple of weeks.
* Get organic pork chops, grass fed ground beef/steak, non-farmed salmon or other fish.
* Use salt for seasoning. Stay away from other spices for a couple of weeks as they all come from plants.

This will give your lower GI tract a rest from all the potentially inflammatory plant molecules. Plants have developed lots of chemical tricks to prevent predation. They can't run, so they are masters at poisoning their enemies.

You'll eat really well, and know quickly if it's working. Eat as much as you want. When/if you get into remission add back spices and wait a couple weeks to see if it causes a problem. Then add eggs and wait. Then add green leafy veggies (salad).

[brandy]

Yes, if you read JFR's success story she ate just carnivore initially it is how she got into remission and
hers was a tough case in that she had suffered for decades.

[carolm]

Hi! I am a prime example of the slow reaction that Tex is talking about. About 2 years ago I started eating cheese again. Not huge amounts but some shredded cheese here and there. Pretty soon I was eating cheese 4-5 times a week. One month of that and I was elated. ‘I can eat cheese again’ I told my husband and daughter! Yippee! I continued and in 2 more weeks my happy cheese eating launched an ugly flare that lasted a month and made my gut produce some very alien looking stuff. It was a miserable but enlightening experience. It took me six weeks of continual exposure to react in a major way but there’s no doubt that inflammation was building all that time.
Clearly not one of my more stellar moments- but definitely what Tex is describing above.

And to echo what Brandy said, I also couldn’t tolerate supplements when I was reacting. Just like the strategy with food is ‘the fewer ingredients, the better’ the same is true for vitamins and supplements. Fillers can contain all kinds of ingredients that are problematic. I had increasing body aches while taking an Omega 3-6 supplement. It turned out that D-alpha tocopherols are soy based, and the inflammation was showing up in joint and muscle aches. Brandy is right about getting D and magnesium in other ways. The other supplements can wait.

Enterolab, for me, was the fast track to getting my diet in order. To this day (8 years after I had it done) I still consider it the best money I spent to get to remission.

BTW- I rarely experienced anxiety until I developed LC. I feel certain it’s the result of our serotonin production being disrupted by inflammation. So it has a physiological cause, but feels like it’s psychological. Once I realized that this was created by my gut and there was no real threat I could talk myself into calming down. I now meditate and practice mindfulness and it’s immensely helpful. In this way my disease has been my teacher.

Best wishes,
Carol

[brandy]

Hi Carol,

Great to "see you"!

I had a late night snack of goat cheese last night. Two strikes against me. Late night snacks are always problematic and
I think the fact that it was cheese caused WD this morning.

I stuck to GF chicken broth today and eliminated supplements. Hopefully I'll be back to normal tomorrow.

[carolm]

Hi Brandy! Late night snacks are not my friend either. I hope you bounce back very quickly.