Finally ready to declare success!

[JulieS]

First, let me say thank you to this community for all your stories, help, and support. I am ready to declare myself a success story! I feel great. (and I never thought I would ever be able to say that again.)

Here's the synopsis:
- Symptoms started end of March/beginning of April 2017.
- Diagnosed with CC end of May (colon biopsy). At this point I am eating only oatmeal, chicken, sweet potatoes, and cooked carrots. Lost 10 pounds. Brain in a fog. Can't leave the house in the mornings. Feeling depressed. Wondering how I am going to cope with a lifetime of food restrictions and GI distress.
- GI doctor prescribes steroids, but I decide to try Pepto Bismol instead. Pepto works. Doctor tells me I will be back for the prescription, but I never returned :)
- I find this forum. I learn everything I can. Hope returns
- EnteroLab results (mid June) encouraging. Only intolerance is gluten; some (1+) reactivity to oat.
- Following the advice from Tex and others on the forum, to promote the best possible healing, I go on a gluten free, egg free, dairy free, soy free diet. Switched from oatmeal to grits. Already taking vitamin D. Add magnesium. Stopped the Pepto.
- By the mid-August, feeling almost normal. No GI pain. Regular bowel movements. Different from before, but perhaps Norman?? I dare to go on a 10-day camping trip.
- End of August, add eggs and limited dairy back into my diet.
- Early September, I successfully add limited fresh fruits and veggies.
- Mid September gain back 9 of the 10 pounds I lost.
- My plan for now is to continue eating gluten free and limit dairy (definitely causes gas) and fiber.

I feel blessed--one of the lucky ones. I have my life back. I am eating a variety of foods again. Life is good.

I wonder: could the CC have been drug induced? Stress induced? Following major surgery in the end of February, I was on 4 different regiments of antibiotics over 6 weeks.
If I had a colon biopsy now, would signs of the disease be gone? Is it possible to be completely disease free? Could I go back to eating gluten? (gluten free cookies are just yucky!)

In another month or two, I might try adding chocolate chip cookies to my diet...

[tex]

Jule,

Thank you so much for posting that wonderful update. It's great that you have responded so well, but you deserve all the credit because you are the one who took the initiative to take control of your health. Good for you.

If I had a colon biopsy now, would signs of the disease be gone? Is it possible to be completely disease free? Could I go back to eating gluten? (gluten free cookies are just yucky!)

It takes from two to five years to completely heal so that your intestinal histology returns to normal. If you don't have any accidental glutenings, the cells in your intestinal mucosa will eventually return to normal. If you begin eating gluten again you will probably relapse, but it may take a few months for the damage to accrue to where it exceeds the threshold for a reaction.

It sounds as though you definitely need a new recipe for GF cookies. Can anyone help out? I no longer eat sweets so don't have any suggestions other than the Enjoy Life Double Chocolate Chip cookies that I used to eat (if you want a commercial product).

Take care and be healthy so that you can enjoy your new lifestyle.

Tex

[JulieS]

Ok. You have convinced me. I will stay away from gluten.
And I can't believe I am saying this: I can't wait for my next colonoscopy! (that's just sick!!)

[Deb]

Julie, try this recipe. I haven't but I've heard they're good. ATK is part of Cook's Illustrated and I am usually pretty happy with their recipes though they can be a bit "fussy". I make a good pie crust by them. Pre MC I actually tested recipes for them for a while, which was fun. There weren't any recent opportunities for GF testing the last time I checked. Deb
https://www.americastestkitchen.com/rec ... ip-cookies

[JulieS]

The recipe looks great. Thank you!

[Marcia K]

Julie, thank you for sharing your success story! It will be very helpful/encouraging to someone who is just starting on this journey. I know how down I felt when I found this awesome group and while it was hard to believe it would happen to me, taking their advice helped me to return to normal. Against All Grain has a gluten free chocolate chip cookie that is supposed to be awesome. I have never made it because I eat all the Enjoy Life chocolate chips before I can make them! The chocolate chips are pretty good if you need some chocolate. I buy Enjoy Life chocolate chip cookies on occasion, too. I'm so happy for you!

[JulieS]

Thank you Marcia. I appreciate the kind words.

[brandy]

Our very own "Dee's Kitchen" has a lot of good recipes. Check the top of our forum. Also check out Elena Amsterdam's website.

[Cat]

Julie -

I am encouraged by your story and grateful you posted it here.

To gain control and feel "normal" again after just six months is wonderful.

I was diagnosed in July, 2017 and found Pepto Bismol an inadequate band-aid and Budesonide only 50% effective and so now (as of Sept. 20, 2017) I do:

elimination diet - no soy, eggs, gluten, sugar, dairy or caffeine; pretty much little/no alcohol (had wine 2x)

all organic, grass-finished animal protein, and organic vegetables, mostly dark greens - berries and Coyo yogurt (it's coconut milk fat)

acupuncture 1 or 2 times a week

Chinese herbs, 3 doses, 3 times a day

All of these things are being monitored and administered by a PhD nutritionist/acupuncturist familiar with autoimmune disorders, particularly gastrointestinal ones.

My watery diarrhea has gone from a miserable, volatile 12 - 20 times a day, 24/7 to just 4 - 6 and not nearly as explosive. It IS still very watery, which is disheartening (and can be exhausting).

I have stomach cramping on and off and can't really pinpoint specific foods that trigger this.

I DO drink a cup of bone broth first thing in the morning, which is very soothing and recommended by my nutritionist.

I DO eat about a cup of white rice each day. This helps lessen diarrhea.

I take (as of this week) ReMag, 5000 IUs Vit. D, an all natural complex Vit B supplement, Omega 3 fish oil supplement - and 1000 mg Valerian root and 3 mg Melatonin, to aid sleep.

My frame of mind is better today than it was 2 weeks ago, when I was so very bummed about this condition and feeling terribly resentful of giving up my espresso/almond milk morning ritual (still very much miss it); wine (I'm a food and wine writer - the irony!! :), and generally cooking 100 food things/recipes that give me so very much enjoyment. One morning all I could think about was scrambled eggs. I just wanted some damn eggs. :)

But my goal is this: Get solid bowel movements, be completely without gas/bloating/pain.

So this is the track I'm electing to take, for now.

Anyone who's made this work for them, I'd love to hear about it. That's why I click to "Success Stories" with regularity. I need to know it's possible.

Thanks, all - and thank you, Wayne, for this forum.

Cathie

[Cat]

Julie -

I am encouraged by your story and grateful you posted it here.

To gain control and feel "normal" again after just six months is wonderful.

I was diagnosed in July, 2017 and found Pepto Bismol an inadequate band-aid and Budesonide only 50% effective and so now (as of Sept. 20, 2017) I do:

elimination diet - no soy, eggs, gluten, sugar, dairy or caffeine; pretty much little/no alcohol (had wine 2x)

all organic, grass-finished animal protein, and organic vegetables, mostly dark greens - berries and Coyo yogurt (it's coconut milk fat)

acupuncture 1 or 2 times a week

Chinese herbs, 3 doses, 3 times a day

All of these things are being monitored and administered by a PhD nutritionist/acupuncturist familiar with autoimmune disorders, particularly gastrointestinal ones.

My watery diarrhea has gone from a miserable, volatile 12 - 20 times a day, 24/7 to just 4 - 6 and not nearly as explosive. It IS still very watery, which is disheartening (and can be exhausting).

I have stomach cramping on and off and can't really pinpoint specific foods that trigger this.

I DO drink a cup of bone broth first thing in the morning, which is very soothing and recommended by my nutritionist.

I DO eat about a cup of white rice each day. This helps lessen diarrhea.

I take (as of this week) ReMag, 5000 IUs Vit. D, an all natural complex Vit B supplement, Omega 3 fish oil supplement - and 1000 mg Valerian root and 3 mg Melatonin, to aid sleep.

My frame of mind is better today than it was 2 weeks ago, when I was so very bummed about this condition and feeling terribly resentful of giving up my espresso/almond milk morning ritual (still very much miss it); wine (I'm a food and wine writer - the irony!! :), and generally cooking 100 food things/recipes that give me so very much enjoyment. One morning all I could think about was scrambled eggs. I just wanted some damn eggs. :)

But my goal is this: Get solid bowel movements, be completely without gas/bloating/pain.

So this is the track I'm electing to take, for now.

Anyone who's made this work for them, I'd love to hear about it. That's why I click to "Success Stories" with regularity. I need to know it's possible.

Thanks, all - and thank you, Wayne, for this forum.

[Want to add that I AM taking 6 mg. Budesonide for the time-being, to keep symptoms somewhat in check while we figure out the diet piece. GI wants me to take 9 mg a day and go away. She believes in nothing but Western medicine protocol.]

Cathie

[tex]

If it were me, I would try doing without the Chinese herbs for about a week to see if that helps. If that didn't help, I would cut out the Valerian root. If that didn't help I would substitute squash, sweet potatoes and green beans for the dark green vegetables. Next, cut out the berries and beef. Less is more when treating MC, and if you cut out enough of the unnecessary stuff, eventually you will find the problem.

But the proper way to go about an elimination diet is to cut out all the unnecessary stuff right up front, in order to achieve remission much sooner, and then you can simply add it back into your diet later (one at a time so that you can detect any reactions) if you want.

Things like Chinese herbs and Valerian root (and dark green vegetables) may seem like a good idea, but they can keep you from ever reaching remission. Unless your PhD nutritionist/acupuncturist actually has MC, he or she does not really know how to treat MC. MC is not your run of the mill AI disease — what works for treating other AI diseases or even other IBDs does not work for treating MC. That leaves virtually all dieticians/nutritionists flummoxed by the disease.

Tex

[Cat]

Ugh ... I must admit, Wayne. Your reply is very difficult to take ...

I'm already trying to wrap my soul around how this disease has thrown me psychologically sideways. ...

I know that you've listed this in other places.

Would you mind stating:

Exactly what CAN be eaten in the elimination diet you recommend?

And how long does one stay on that before trying to add something in?

Thanks loads,

Cathie

[Cat]

To be clear, in your "cutting it all out at once," what I am asking is: What exactly must I eat to be as clean as possible and achieve remission asap?

Alternatively, at the start of your initial answer, if I'm understanding, you suggest: first eliminating the herbs. If not change, continue to eliminate herbs, but then also eliminate Valerian root, etc. You keep removing things - each removal - give it a week? Or more?

Thank you again,

Cathie

[tex]

Hi Cathie,

I'm sorry that my answer may be a bit confusing. The complexity of this disease makes it tough to suggest specific foods for a recovery plan. For one thing, I can't tell you exactly which foods will be safe for you. The only way to determine that would be by using a stool test from EnteroLab. But even that would not be an absolute answer, because no test is perfect. Their results are so much better than any other lab, though, that they're the best choice by far — probably something like 95 to 99 % accurate. They can't tell you which foods you can eat, but they can tell you which foods you shouldn't eat (because your immune system produces antibodies against them).

That said, I can tell you which foods are safe for everyone, and which foods are safe for most people. If you want to continue trying an elimination diet, the proteins (meats) that are safe for everyone include lamb, venison, turkey, rabbit, duck, goose, pheasant, quail, ostrich, alligator, etc. In other words, unconventional or wild-type meats, Except for bison. Bison contain domestic cattle DNA.

Herbs, spices, and most supplements are risky. You may or may not be able to tolerate them so it's safest to cut then out until you are able to test them one at a time after you are in remission. As difficult as it is to reach remission in some cases, we can't afford to take unnecessary risks. And most supplements are unnecessarily risky, no matter who says they're great. Safe forms of vitamin D and magnesium (preferably topically-applied) are the only supplements that should be considered because they may be absolutely necessary for healing if you are deficient.

You can't test foods until after you are in remission because you can't reliably tell when a food causes you to react when you are already reacting. The main reason why you have to minimize the risk is because you have to eliminate every allergen in order to reach remission. Just avoiding certain foods won't do the trick. You have to avoid every food and every other element that might cause you to react. And almost all of us require different diets. That's what makes recovery so difficult. Some patients recover easily, but the tough cases can be really tough. Controlling this disease may turn out to be the most difficult thing that some of us have ever done.

The main point is to reach remission as quickly as possible and the surest way to do that is to eliminate as much risk as possible by eliminating all non-essential items. The secret to making an elimination diet work for you is to give it time to work. But if what you are doing doesn't work after enough time, you have to try something different, such as a different meat and/or a different vegetable. In the end, we all become pretty good food detectives.

After your gut has healed from gluten damage, then removing foods or medications from your diet for 3 or 4 days should be sufficient to show improvement. But that doesn't mean that you can add it back in if you don't improve without it. Remember, you can't test foods until you are in remission, so you might be adding back in a food to which you react. If you make that mistake, you may never reach remission.

The elimination diet works by removing all risks up front, achieving remission, and then testing foods to see which ones can be added back into the diet. If we start with a bunch of risky items, then working backwards is usually a frustrating process.

Tex

[Gabes-Apg]

Cathie
it is tough at first, complete strangers on the web telling you to 'disregard' everything about eating that you have known for 30-40 years.

we have guidelines for recovery with the bland 'stage one' healing eating plan here
http://perskyfarms.com/phpBB2/viewforum.php?f=79

in this section is also a post/thread with some good reads and resources to help with the mental and emotional aspects of living life with MC.

hope this helps