Newbie with questions on recovery diet

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Lorraine
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Newbie with questions on recovery diet

Post by Lorraine »

Hi all,

This is my first post. I was diagnosed with CC in 2010. Symptoms in the beginning were mild and manageable but by 2016, I was having a LOT of diarrhea and knew I had to do something. I’m averse to pharmaceuticals but tried all sorts of supplements and remedies without success. I kept a food/poop log but could never determine what food(s) might be a problem. In my research, I came across Wayne’s first book, bought it, read it, and felt both encouraged and discouraged at the same time. I ordered the Enterolab test. Gluten sensitivity was, of course, the biggie, plus a host of other intolerances. Seemed like there was hardly anything that I could eat. I was overwhelmed and confused. So as a start I just went gluten free.

Three years later and I was no better off. I was still having lots of diarrhea (hidden gluten in my diet perhaps? who knows). So in late December 2019, around Christmas, I decided to hell with it, and went back to eating gluten. Surprisingly, in January and February I had mostly normal stools! However, that experience was short-lived, and I am now into my seventh month of ongoing WD, sometimes 10-12 times a day.

I can’t go on living like this!

I recently bought Wayne’s revised book, read it, and then started reading the posts on this forum. As others have said, there’s a wealth of helpful information and support here. I’m now ready to do whatever it takes to heal my gut and to commit to the recovery diet. But I need some help getting started. I’m uncertain about what foods are safe for me to start with.

Here are my Enterolab results from 2016:

Fecal Anti-gliadin IgA – 298 Units (normal range is less than 10 units)
Fecal Anti-casein (cow's milk) JgA – 58 Units (normal range is less than 10 units)
Fecal Anti-ovalbumin (chicken egg) IgA – 52 Units (normal range is less than 10 units)
Fecal Anti-soy IgA – 76 Units (normal range is less than 10 units)
Mean Value 11 Antigenic Foods – 56 Units (normal range is less than 10 units)

2+ and 3+ Foods (in order of least to most immunologic reactivity):
• Grains: rice, oat, corn
• Meats: pork, beef, tuna, chicken
• Nuts: walnut, cashew, almond
• Nightshades: white potato

There were no foods in the “no” or 1+ category.

Quantitative Microscopic Fecal Fat Score – 871 units (normal range is less than 300 units)

It looks like chicken is definitely a no-no as a protein. I’m thinking turkey and lamb, and possibly pork, to start with.

Both rice and white potato are problematic according to the above, although rice is the least immunological of the grains. Should I avoid both initially, or should I chance rice?

And how about bone broth made from chicken or beef. Would that be a problem?

I drink a coffee substitute every morning that is made from extracts of roasted barley, rye, chicory root, dandelion root, and sugar beet. It is gluten free. The package says all gluten from barley and rye is eliminated in the extracting process. Is this safe for me to drink on the recovery diet?

And what about coconut water? Ingredients: coconut water, less than 1% natural fruit sugar, vitamin C.

Your feedback will be most welcome and appreciated. Thanks!

[P.S.--As a new user, I must say that I find the setup of this forum a challenge to navigate. Very frustrating trying to figure out how things work. Saving a draft of this post did not work and I had to re-do. Under "Options" there is a choice of posting topic as normal or registration. I don't know what that means. The default is set at registration so I left it at that. I have no idea where this post will end up. Also I'm not sure I was able to save an avatar in my profile; I will see if it's there when I post... if I can find my post.] :???:
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HockeyMom
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Post by HockeyMom »

Hi Lorraine...
My Enterolab score was like yours...no zero or ones, all 2 and 3s! I cut grains out totally, only did sweet potatoes..

I made so much lamb bone broth that I could probably fill a swimming pool with it. :shock: My meat was lamb, elk, turkey and antelope. That sounds odd, but I had game meat in my freezer and had friends who hunted that helped me out when I ran out (it helped living in Denver).

I pressure cooked carrots, zucchini, all kinds of squash. I am a tea drinker so that was it...no sweetener. No booze. Did alternative chips like taro, sweet potato, cassava... bananas, avocados, sunflower butter. I ate like a Plains Indian according to my friends. Coconut milk.

Anyway, those are my ideas...I looked for anything that was alternative that I could try. I did not cheat, I did not eat out, basically nothing went in my mouth that I didn’t know the ingredients of!

Ultimately what ended up helping me is massive amounts of cholestyramine . I honestly can say that I tried the diet thing..and you definitely need to go down that road first!

Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
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Lorraine
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Post by Lorraine »

Thanks for the ideas, Laine.

I’m thinking maybe I better stay away from pork for now since it’s on my 2+ list, even though it’s the least immunological, and do as you did by starting with turkey and lamb. Elk is certainly an option too; we have a couple of suppliers in my area. One of them also has buffalo, wild boar and venison that I could also try later.

I guess it would be best for me to cut out all grains as well, including rice? Sad to see that go for now. :sad: White potatoes I won't miss as much (although I do love mashed potatoes smothered with butter) and I'll do as you did and substitute with sweet potatoes. Butter is to be avoided too I suppose? Is ghee okay to put on the sweet potatoes and other veggies instead?

And, hey, this is a good time for me to bring out the Instant Pot I got as a gift for my birthday last December that’s still in its box and learn how to use it! :smile:

I’m not a black tea drinker, but I do like herbal teas. Are they okay?

How do you make your lamb broth?
Why be unhappy about something if it can be remedied?
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Lorraine
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Supplements

Post by Lorraine »

More questions… this time about supplements and the recovery diet.

The following are supplements I’m currently taking daily. Most of them say they are free of gluten, soy, wheat, eggs, dairy, yeast, citrus, preservatives, artificial flavour/colour, and starch. However, they also contain other stuff that I haven’t a clue about.

Does anyone know if there are any ingredients here that could cause issues while on the recovery diet?

• Vitamin B complex – contains microcrystalline cellulose, vegetable magnesium stearate, silicon dioxide
• Vitamin B12 – contains lactose monohydrate, microcrystaline cellulose, croscarmellose sodium, vegetable grade magnesium stearate
• Vitamin C, lypo-spheric – contains ethyl alcohol, citrus acid
• Vitamin D3, micro emulsion drops – contains acacia gum, sesame seed oil
• Vitamin K2 – contains coconut oil, bovine gelatin, glycerin
• Magnesium glycinate – contains hypromellose, gellan gum, potassium acetate
• Taurine – contains stearic acid
• Krill oil – in a fish gelatin licap
• Ubiquinol – contains ascorbyl palmitate, annatto, gelatin, glycerine, white beeswax, sunflower lecithin, sunflower oil
• d-Ribose
• Collagen, hydrolized – bovine skin

Many of these supplements I am taking for a heart condition. I have Afib; had an ablation in February and so far the heart is staying nice and quiet and beating normally and in rhythm. I want to keep it that way. So some of these supplements are primarily for that purpose. I’m also on a prescribed anticoagulant (Eliquis) and a beta blocker (Bisoprolol).

One more thing… I have purchased Dr Fine’s Oro-Intestinal products and will start his protocol in conjunction with the recovery diet. They include a 1-day gastrointestinal washout and intestinal flora renewal, flora fertilizer, pan-intestinal probiotic, colonic multi-strain probiotic, and a hi-potency digestive enzyme, along with some oral products. (Rather expensive, I might add, but worth it if they are effective.) I’d be interested in knowing if anyone on the forum has used his products and what your experience was.

Thanks!
Why be unhappy about something if it can be remedied?
And what is the use of being unhappy if it cannot be remedied?
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Post by HockeyMom »

Yes , I used ghee. Rice was my 3+ thing so I didn’t touch it for a long time. The problem with some of the herbal teas was soy or something unexpected like that.

I used olive oil, avocado oil and coconut oil. I did the lamb broth overnight in the crockpot with bones from Whole Foods, water and a little apple cider vinegar . I then froze that broth to use all week. I’m sure the butchers at Whole Foods thought I was nuts. I would call and make sure they had bones...again, they have lamb on the western slope in Colorado so that was fairly easy to find. I avoided ground turkey as the folks on this page said the rosemary extract in it was in like soy oil or something...

Crock pot and pressure cooker! Froze individual portions of my over cooked veggies, meat and broth. Thank goodness I had a large freezer in the garage..

If you look around, you mostly can find supplements without all the additives . I only did fat soluble vitamins because of the cholestyramine . I did take the Thorne labs B complex for awhile (a favorite on this page), but stopped when 2 different Drs and labs told me my levels were high :grin:

I did magnesium oil then lotions with the occasional epsom salt bath. Oral magnesium pills felt too risky. Still do Elepure Magnesium lotion daily. I did try the Remag liquid. No issues with it, just like the lotion better. Denver and now Phoenix are dry, so I kill 2 birds with one stone with mag lotion.

It’s a process...

Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
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tex
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Post by tex »

Hi Lorraine,

Welcome to the group. Laine did a good job coverering most of your questions, so I can't add much. Regarding that coffee substitute that contains derivatives of barley and rye: I would be very, very surprised if that would not prevent you from ever being able to achieve remission. Products such as that may be low-gluten, but there are countless other proteins in them (from barley and rye) that will cause us to react, despite the fact that there are no tests available to detect them. Gliadin is the only protein for which tests are available. Gliadin is tested for because it's the main protein we react to, but there are several hundred more (reactive proteins) in wheat, barley, and rye, so we have to totally avoid any derivative of those grains (also oats).

Also, since you are sensitive to beef, avoid bison (buffalo), because these days, all bison have DNA from domestic cattle due to cross-breeding over the decades.

Remember, for the diet to work, we can't allow even a single significant issue. If we miss (overlook) anything that causes us to react, we will continue to react. You're taking a huge number of supplements. Looking at your supplements, I see at least three problems, vitamin C, vitamin K2, and collagen.

When we're reacting, we're sensitive to citric acid, and that includes vitamin C supplements. It should be avoided unless it's absolutely essential.

The bovine gelatin in the vitamin K2 is made from cowhide. Of course the plain collagen is a much bigger source of cowhide. Normally, collagen supplements don't seem to be a significant problem for most of us and beef is usually not a major intolerance (I'm sensitive to beef myself). Small amounts may cause me to have upper back pain, bloating, and a headache, but not diarrhea. So the collagen may not cause you any major problems, but if it's not essential, I would avoid it until I was able to reach remission. The main problem here is that the individual items might not cause any problems, but the cumulative effect of all of them together probably will cause problems. That said, don't cut out anything that might be important for your heart function without at least checking with your doctor. Hearts take priority over intestines.

I hope this helps,

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Lorraine
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Post by Lorraine »

Laine & Tex,

Thanks, Tex, for the welcome and thanks to you both for all the suggestions.

Looks like I will need to scrutinize everything real closely to make sure I don’t accidentally ingest something problematic and end up shooting myself in the foot.

Based upon your remarks, Tex, I will forego the coffee substitute and, unless I can confirm that my herbal teas are pure, they will have to go too. I avoid regular coffee because caffeine can be a trigger for Afib. I do permit myself the occasional brewed decaf. Would that be okay for the gut? I have read on this forum that instant decaf is a no-no though. And since I’m not fond of black tea, that doesn’t leave me with much to drink besides plain ole water.

I’m wondering about coconut water. Ingredients list Vitamin C. I usually drink one of these a day as a source of potassium for my heart. Your thoughts on this?

Good to know that I should avoid bison because of my sensitivity to beef. I will restrict myself to turkey, lamb and elk to start out with. And with ground turkey, I’ll make sure to check that it doesn’t contain rosemary extract.

The supplements are another issue to figure out. D3, K2, Mg, taurine, ubiquinol and d-Ribose are ones that I take for heart function. With D3, I take a high dose as I struggle to get my 25D level in the optimal range. And K2 and Mg are needed to work in conjunction with D, so I don’t want to stop them. I will search to see if I can find a K2 that does not contain bovine gelatin. In addition to the Mg glycinate capsules, I also use a spray. So I think my approach here will be to stop the capsules for now and increase the amount of spray, plus do some foot baths. I think the taurine and d-Ribose should be okay. Ubiquinol contains gelatin which could be bovine, so I will need to check this out.

With the others, I will avoid the collagen for now. Not good news about Vitamin C, especially with COVID and the flu season coming up. I take it to help prevent colds and respiratory infections, but I will hold off for now. Any suggestions for a substitute?

So much to think about and figure out! It’s overwhelming and is going to be a challenge. But as Desmond Tutu once wisely said “there is only one way to eat an elephant and that’s a bite at a time.”

I started Dr Fine’s protocol this morning with the GI washout. No food intake today. Tomorrow I begin my journey on the recovery diet! And I’m grateful that I won’t feel all alone as I have this wonderful forum to reach out to in my times of need.

I truly appreciate your feedback and helpful suggestions. Thank you.




Why be unhappy about something if it can be remedied?
And what is the use of being unhappy if it cannot be remedied?
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tex
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Post by tex »

Coffee is not a problem for most of us. Unless your decaf version has added ingredients, it should be OK, too. Pure teas should be OK, as long as they don't contain an artificial sweetener.

Vitamin C is added to many drinks and other products as a preservative. If the amount of vitamin C is low, coconut water should be OK, otherwise.

Vitamin C has a dose effect. Small amounts may not bother us; larger amounts may. As long as you don't overdo it, you may be OK with a small to moderate vitamin C supplement.

Your best defense against COVID-19 (outside of avoiding it) is maintaining a healthy immune system by keeping your vitamin D and magnesium levels up.

Small amounts of collagen (as in medication or supplements) may not be a problem. A cheap source of collagen is strawberry jello. Gelatin is collagen. Strawberry jello is flavored with sugar, which is safe for us. Some flavors of jello are made with aspertame, which is not safe for us.

Dr Fine's treatment seems somewhat harsh (but maybe I'm looking at it wrong). I hope it doesn't abort your recovery. When you try two different treatments at the same time, and one goes wrong, you won't be able to tell which one was working, and which one wasn't.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Lorraine
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Post by Lorraine »

Thanks for the additional info, Tex.
tex wrote:Coffee is not a problem for most of us. Unless your decaf version has added ingredients, it should be OK, too. Pure teas should be OK, as long as they don't contain an artificial sweetener.
Good to know decaf should be okay, even instant. I buy Mount Hagen Organic Fairtrade Instant Coffee. Near as I can determine there are no added ingredients. And the extraction process does not use any solvents. Unroasted beans are soaked in warm water and steam so that natural carbon dioxide can bind the caffeine to it. This process is repeated several times until the caffeine content is under 0.1%. So I think it should be safe for me to drink. Yay!
tex wrote:Dr Fine's treatment seems somewhat harsh (but maybe I'm looking at it wrong). I hope it doesn't abort your recovery. When you try two different treatments at the same time, and one goes wrong, you won't be able to tell which one was working, and which one wasn't.
Darn… that never occurred to me. You’re right, it makes sense to test only one at a time. However, since I’ve already started Dr Fine’s treatment, I’m going to continue on it for now. And since I’m mentally primed to begin the recovery diet, I’ve decided to go ahead and start it today too. Hope I’m making the right decision. Time will tell, I guess.

May I ask what is it about Dr Fine’s treatment that you think is harsh? The washout yesterday to clean out my colon was not that difficult. First thing in the morning, I drank a magnesium sulfate laxative combined with a muscadine grape-blueberry juice, followed by a cup of green tea a few hours later, followed by some intestinal fiber and probiotics later in the day. No food or drink except water all day. I felt fine and my system appeared to be cleaned out by mid-afternoon. No poops since then and I had a good breakfast this morning. According to the package, this product “will renew your entire intestinal flora in one day, replacing your existing colonic flora with a more healthful one.” Going forward, the daily protocol includes two probiotics (a pan-intestinal and a colonic multi-strain), a digestive enzyme and a flora fertilizer (dried and ground blueberry skins, seeds and pulp, stevia leaf powder). Is there something in these products that could abort my recovery?

Thanks again for all your help and support.
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Post by tex »

Well, you've just described why I consider it harsh for many/most MC patients — it begins with a laxative, and attempts to replace the intestinal flora. Most MC patients don't need a laxative. And published research shows that intestinal bacteria that began life in a laboratory setting (rather than a human gut) will not stick (attach to the gut wall), so unless they're replaced every day (as with the theory behind probiotics), the body purges them with stool. Also prebiotics (flora fertilizer), are just as likely to promote the development of colonies of pathogenic bacteria as they are to help the so-called good bacteria to thrive. Additionally, the fiber content (dried berry skins, seeds, and pulp) would be very irritating for most MC patients.

That said, we're all different, and I have no way of knowing how well you will personally tolerate the treatment. There are exceptions to every rule — I just base my suggestions on the accumulated experience of the members of this forum over the 15+ years that it has been in operation, to recommend what works best for most of us (not each and every individual). You are probably the first one here to get up the nerve to try that treatment, so please share your results.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Lorraine
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Post by Lorraine »

Well that bit of news really sucks! Had I known this before I started Dr Fine’s protocol, I doubt now that I would have done so. Now I have a dilemma. Do I stop or carry on? My knee-jerk reaction after reading your post this afternoon, Tex, was to stop immediately. I’m still considering that. But this is all so confusing.

I thought Dr Fine’s products would be beneficial, certainly not detrimental. It’s not like he’s some snake-oil huckster. He’s says he’s a research and clinical gastroenterologist and, having MC himself, that he developed these products to solve his own issues. With his knowledge and experience of MC, I can’t imagine that he would have developed products that ended up doing more harm than good.

I’m conflicted now and don’t know what to do. :confused: :sad:
Why be unhappy about something if it can be remedied?
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Post by brandy »

vitamin c sources:

Rose hip tea

yellow bell pepper, boiled to death

https://www.healthline.com/nutrition/vitamin-c-foods

Most of these foods I could not tolerate early on. I would avoid greens for now. I would avoid broccoli and brussel sprouts for now
(too much gas). I'd try rose hip tea (only ingredient). You might be okay with yellow bell pepper boiled to death.
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Post by brandy »

If you want a food alternative for taurine

dark meat turkey, shellfish--I was okay with this early on, many people are not

https://www.ncbi.nlm.nih.gov/pmc/articl ... %20bologna.
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Post by brandy »

I was ok with coconut water early on. I'd try to find one without the C.

The Asian groceries have a big selection.
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Post by tex »

Lorraine,

Those are some good suggestions by Brandy.

Dr Fine reached remission back in the early 1990's by following the GF diet. He developed the Pepto treatment a few years thereafter. He pursued songwriting and performing rock songs in the early part of this century, then he tried offering gut health seminars and summer health getaways. As far as I'm aware, he's developed the latest products and begun to promote them during the last 5 or 6 years (but I admit I haven't kept a close check on him over the years — I sort of lost track of what he was doing when he decided to become a rock star).

Since you've already started Dr Fine's treatment, you might as well see how it goes. It might work well for you. You may be able to tell something about the way it's working by keeping a journal of what you ingest and how you feel afterward. Some symptoms show up within a few hours, others take a half-day or even a day or so to develop. The key to gaining control over MC (remission) is to ingest as small a variety of items as possible in order to minimize the risk that one of them may cause us to react.

Best of luck with your recovery.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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