LC for 1 year - introduction (with Enterolab report)

[LCDave]

I'm 64, and was suddenly plunged into the world of urgent WD at the end of July 2012. I was diagnosed with LC in September of 2012. The GI prescribed budesonide but I thought I'd try some alternatives first. I'm a vegan and have been following Dr. Joel Fuhrman's precepts (eating natural foods, leaning towards those highest in micronutrients and phytochemicals and not adding oils, salt or sweeteners) for the past three years or so. Before that I was an ovo-lacto-vegetarian since 1974.

Over the past year I've eliminated gluten and raw salads, tried VSL#3 probiotics for months, and eventually narrowed my foods to GF cooked cereals with bananas and berries and unsweetened soymilk for breakfast, kale/carrot/beet/apple juice and winter squash and sweet potato for lunch, and usually a miso soup with scallions, mushrooms, kale, carrots and tahini for dinner. I also eat rice cakes with vegetarian chicken salad (soy protein spread, GF), and rice cakes and crackers with peanut or cashew butter and a bit of blueberry fruit spread.

I honestly don't know how to eliminate soy from my diet without perishing, though my Enterolab soy score (along with everything else!) isn't good. My distressing Enterolab report from April is at the bottom of this post.

I didn't seem to be making good progress so a few months ago I tried Pepto-Bismol 8x day for 8 weeks (mid-May to mid-July).

After that I was better, having 2x BMs in AM and sometimes one in PM, I guess "puff poopie" would describe most of it. The urgency and surprise factor have diminished greatly. BUT I've lost weight and am listless and my health seems very fragile. I have recurring shingles on my ear when my resistance gets down to zero and I had a mild bout of that after the Pepto.

After the shingles episode, swollen lymph nodes and a rather dire self-assessment of my overall health I decided to see a doctor recommended on this site (though he's expensive and doesn't accept any insurance). I was surprised that he thought the Enterolab tests were worthless and, in fact, doesn't subscribe at all to the idea that diet has anything to do with MC. I had a colonoscopy there yesterday and he prescribed a short run of Uceris (4 weeks every day then 2 weeks every other day). I see Uceris isn't held in very high regard here, either. Biopsies are due next Tuesday.

So here I am, still lost in the weeds! I had hoped that the Enterolab tests would give me some guidance, but it's all negative it seems. Then I thought the new GI would help me navigate this, but, though he sounds knowledgeable, he seems closed to anything but pharmaceuticals.

I suppose I'll go with his program and see what happens - he gave me an alternate prescription for generic budesonide (and I have some from before), perhaps I should take those instead of Uceris?

Thoughts are welcomed!

----

Enterolab report (April 2013) - you're welcome to add it to the list of reports

Gluten/Antigenic Food Sensitivity Stool Panel
Fecal Anti-gliadin IgA 304 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 62 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 36 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 39 Units (Normal Range is less than 10 Units)

Fat Malabsorption Stool Test (Fecal Fat)
Quantitative Microscopic Fecal Fat Score 536 Units (Normal Range is less than 300 Units)

Expanded Antigenic Food Sensitivity Stool Panel
Mean Value 11 Antigenic Foods 60 Units (Normal Range is less than 10 Units)

While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:

Food to which there was no significant immunological reactivity: None

Food to which there was some immunological reactivity (1+):
Cashew
Beef
White potato

Food to which there was moderate immunological reactivity (2+):
Almond
Chicken
Pork
Walnut

Food to which there was significant and/or the most immunological reactivity (3+):
Corn
Rice
Oat
Tuna


Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:

Grains:
Grain toward which you displayed the most immunologic reactivity: Corn
Grain toward which you displayed intermediate immunologic reactivity: Rice
Grain toward which you displayed the least immunologic reactivity: Oat

Meats:
Meat toward which you displayed the most immunologic reactivity: Tuna
Meat toward which you were next most immunologically reactive: Chicken
Meat toward which you displayed intermediate immunologic reactivity: Pork
Meat toward which you displayed the least immunologic reactivity: Beef

Nuts:
Nut toward which you displayed the most immunologic reactivity: Almond
Nut toward which you displayed intermediate immunologic reactivity: Walnut
Nut toward which you displayed the least immunologic reactivity: Cashew

Nightshades:
You displayed immunologic reactivity to white potato, the member of the nightshade family usually consumed most often and in greatest quantities. While this does not necessarily mean you would react to all other nightshade foods (tomatoes, peppers, eggplant), it is possible. In the realm of elimination diets for immunologic disorders, nightshades are usually eliminated as the entire food class (i.e., all four previously mentioned foods in this class). This is especially important to the clinical setting of arthritis.

[JLH]

LCDave

For your doc


Read the tag line on Tex's posts. "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."

We believe in the validity of EnteroLab tests even if the GIs, allergists and others do not.

You have found the best place in the world for information and support. Welcome to our family.

[JLH]

Check this out! http://www.perskyfarms.com/phpBB2/viewt ... light=daaa

BTW, Polly is an MD (pediatrician).

Perhaps your doctor needs to be taken off the list.........

[tex]

Hi Dave,

Welcome to our internet family. First things first. Obviously I need to remove that doctor's name from our list, and apologize for making that mistake. If you don't want to post his name, you can post his phone number or his location, or some other information that will allow me to pinpoint the correct one, so that I can take care of that problem.

We have quite a few members here who are ex-vegans. In all honesty, your test scores are so high as to preclude any doubt that you are highly sensitive to those foods. Those relatively high antibody levels indicate that you have probably been reacting to those foods for several years. Consequently, IMO, there is no way that you will ever be able to safely control your symptoms and restore your health without eliminating soy from your diet. And as you are well aware, without soy (and legumes, which are related to soy), there is no way that you will be able to get enough protein in your diet to survive, let alone heal. It takes a lot of protein to heal the gut.

It's not impossible that either Uceris or Entocort EC might suppress your symptoms without diet changes, but is your doctor willing to prescribe those drugs for you for the rest of your life, and/or are you willing to take a corticosteroid for the rest of your life? You have to reconcile that question, because soon after a budesonide treatment is discontinued, your symptoms will relapse, and the next time you try budesonide, it will not work as well as it did the previous time.

So unfortunately, vegans and vegetarians face a very tough dilemma if/when they develop MC. And judging by the evidence, it seems likely that a vegan diet actually increases the odds of developing MC (though that has never been proven by any random, controlled research trials, obviously). Interestingly, a very high percentage of our membership is comprised of athletes and individuals who lived what they considered to be a very healthy lifestyle, just the opposite of what one would expect.

I wish I could tell you that there is an easy solution for your situation, but unfortunately, that's not the case. You're in a catch-22 situation, because in order to "get your life back", you must abandon the vegan lifestyle. But obviously if you abandon the vegan lifestyle, then regardless of how much your health might improve, technically you will not have your life back. You will have your health back, but not your lifestyle. This disease is life-altering for all of us, in the long run.

The bottom line is that the medications your doctor has prescribed may mask your symptoms (as long as you continue to take them), but the only way to actually heal your gut and prevent the inflammation from returning, is by avoiding all the foods to which you produce antibodies.

As far as which corticosteroid to try, if you're going to follow that doctor's advice, then you might as well give him a fair chance by following his advice completely, and using his drug of choice. Who knows? It's not impossible that his prescribed treatment might work (without diet changes) — miracles have happened before. In case his plan doesn't work though, you will need to make some tough decisions in order to heal your gut, because MC is not a very forgiving disease

Remember that we are here to try to help you in any way we can, but we can't perform miracles. All we can do is tell you how we have been able to control our symptoms, and what has helped and what has not helped in most cases. Only you can take this information and custom-formulate a plan that will work for you. The really tough part of controlling this disease is that just doing most things right, will not bring remission — we have to do everything right, meaning that we have to avoid every major food sensitivity, even in trace amounts. If we continue to eat even small amounts of just one food that causes us to produce antibodies, then everything else we are doing to treat the disease is for naught.

Thanks, I'll add your results to the list. And good luck with your treatment. I hope for your sake, that your doctor is right, and we are all confused about the proper way to treat this disease, but considering the size of our membership database, and our success rate, that seems extremely unlikely.

Tex

[LCDave]

Yes, I've read your book and read a lot here and have a sense that what you're doing here is effective. As far as my Enterolab results go, though, I couldn't tell if soy was any worse than the meats, or eggs, or dairy; it looks like I'm reacting to all of it, and they're so oddly rated (the mean value of all the second group of foods was 60, which to me means that even the items with lower reactivity could be as bad as soy and eggs, no?).

[tex]

I'm afraid you may be right. Most members here have a much lower overall score on the 11 antigenic foods test, so they can usually safely eat the 1+ foods (at least on a limited basis). 60 is a pretty high result though, so you would probably definitely need to test the foods in that category (after you are in remission) before assuming them to be safe. They may not turn out to be as reactive as soy and eggs, but it's possible that they might prevent you from reaching remission, even if they were part of a rotation program.

Unfortunately, I was unaware of EnteroLab back when I was reacting, so, I kept a detailed food/reaction diary on a computer spreadsheet for over 2 years, and to be honest, even though I tested and retested various foods (by trial and error) many times, I could never be 100 % sure about most of them. Finally, out of desperation, I eliminated every food that my records showed to be suspicious, and adopted a minimal, bland diet, and lo and behold, it worked. The EnteroLab tests could have saved me years of misery, if I had been aware of them.

Thank you for emailing me the name of the doctor you mentioned. His name and contact information have been removed from the list.

Tex

[LCDave]

I just reread my Enterolab report looking at the grains. I had really focused on the "Grains toward which you displayed..." section, but hadn't really noticed that ALL the grains are in the 3+ (maximum reactivity) group!!! I had been thinking "Corn +3, Rice +2, Oats +1", but that's not really the case, it's "Corn 3+++, Rice 3++, Oats 3+"!!!

Looks like I need to cobble together a diet without those grains (or any grains? Is quinoa or millet or buckwheat, not tested, likely to be any less reactive?).

I can't quite imagine a diet without grains, but perhaps that's an epiphany I need.

[tex]

Yes, I noticed the grain issue also. You are clearly a candidate for a modified paleo diet. That is to say, you might start with a paleo diet, and eliminate any foods allowed on a paleo diet that you know cause you to react. The internet is loaded with lists of paleo foods that you can consider.

Is quinoa or millet or buckwheat, not tested, likely to be any less reactive?

I'd like to say, "Yes", but while some of us can tolerate those foods, many of us tend to react to them also. Quinoa's biggest problem is that it is sometimes cross-contaminated during the growing stage, and it's frequently cross-contaminated with barley during the drying stage (after harvest). If you can locate a source of kosher quinoa, it should be safe. Millet is worth a try, but it is also a grass, so it is a distant relative to sorghum and maize (corn).

I'm not sure why buckwheat causes problems, but many of us don't seem to be able to tolerate it very well. It's definitely not a grain. Instead, it's related to rhubarb. Rhubarb can develop high oxalic acid levels, especially if grown under cold conditions, so perhaps the oxalic acid is the connection (because oxalic acid can cause GI issues for many people), but that's just a WAEG.

You're not alone, many of us who have been eating grains all our life, find that we do so much better without them. The current industry/government/medical promotion of whole grains as the basis of a healthy diet is a cruel hoax that is slowly undermining the health of most of the world's population. The carbs from grains are not only making us fat, but they are the source of many/most health issues. Virtually all of the health issues that we are dealing with today did not exist before grains were adopted into the human diet, during the neolithic period of history, roughly 10,000 years ago.

Tex

[brandy]

Hi Dave and Welcome!



I'm presently have sweet potatos as a side 3 x per day. I'm 51 year old woman and I have 1/2 with my breakfast, 1/2 with my lunch and 1/2 with my dinner. I was struggling with eating paleo (always hungry) until I asked my personal trainer how much sweet potatoes he eats a day. (I've seen him eat dinner and he always has sweet potatoes.) He's a 32 year old male and he averages 2-1/2 sweet potatoes a day. He eats around 5 mini meals a day and has a 1/2 of a sweet potato with each mini meal. His wife has IBS and as a result they both eat paleo and eating paleo is the only thing that has brought his wife's IBS into remission. He boils the sweet potatoes in advance. Puts them in fridge, cuts in half prior to meal and takes off jacket then microwaves.

Occasionally I'll have regular potato as a side. If you eat regular potato steer clear of russets. They are tougher to digest. We've had discussions about them prior and Tex has listed the safer potatoes to eat. I can't remember the names but I get the little red or the little yellow potatoes which are easier to digest.

Once and awhile I'll have rice pasta but that may be out for you.

Sugary things like apple juice and jam are problematic early on also. Also simplify your diet early on really helps--you can more quickly identify safer foods. If you are taking a lot of supplements kick them to the curb and add them back one at a time after your gut heals. Supplements are like little pellets going thru our digestive system and can be tough to digest.

We've had a lot of vegan's hit this board. You might want to do a search of prior discussions.

You are used to eating things without ingredient lists (compared to a lot of us who hit this board.) If you can figure out a way to eliminate the grains and the soy I think you'll respond favorably to diet change, i.e you might get thru it without drugs. A number of folks have healed by the diet angle only. I was a 4.5 month entocort user and it helps--in my case solid stool in three days but diet changes are really key. The Entocort doesn't "heal us." Without diet changes we're at high risk of relapse when getting off of Entocort.

My niece is a vegan so I know it is very tough. I believe some of the mc vegans will ease into fish.

If you want to check out some of the paleo websites Loren Cordain's is good and Marks Daily Apple is good. One of our MC dieticians (MC hits all walks of life) recommends the Loren Cordain books. I find some of the other paleo websites to be somewhat fanatical.

Regards, Brandy

[Leah]

Welcome dave!
Wow, your test results are tough. I know a little of what you are going through because i am a personal trainer and nutritionist and have been eating "healthy" for years. I wasn't vegetarian, but I did consume a lot of fiber. it takes a while to de-program our brains and change what we think of as healthy. You must come to the realization that what is "healthy" for us is a diet that will help us heal.

I took out almost everything that i thought could be a problem while i started Entocort. the drug worked very well for me ( I was on it for 6 months slowly weaning off), but i put my faith in what everyone here said and stuck to my diet of mostly meats, sweet potato, cooked veggies, apple sauce.... Granted, I am able to eat rice, so that helped a lot. many people here eat a lot bone broth when they first are healing. RAW FRUITS AND VEGGIES are also out until your gut can handle the fiber and fructose.

I hope you find the strength to get on board with this diet and start the healing process. The probiotics may be making things worse. they do for me. Also, as much as Entocort worked for me, you had some success with the Pepto Protocol. You may only need to do that treatment along with the diet to see results. Just a thought.

Leah

[LCDave]

I decided against the budesonide or Uceris and decided to really double-down on my diet. I went back and reread Dr. Fuhrman's Autoimmune Protocol and a newsletter about IBD and Crohn's. To get more calories and protein, I've stepped up my consumption of nuts and seeds (soaking cashews, sunflower seeds, pumpkin seeds and Spanish/Mediterranean pine nuts ($!) overnight to make them more easily digestible), and replaced grains with quinoa, amaranth (very tasty) and millet. So far, so good! My symptoms are much better (borderline constipation a few times) and I feel more robust overall.

The basic autoimmune protocol is:

- High-nutrient, vegan diet (no dairy), rich in green vegetables
- Blended salads/smoothies and blended soups (utilizing leafy greens) to increase absorption of phytochemicals (I make VitaMix smoothies with kale/banana/avocado)
- Fresh vegetable juice (carrots, beets, parsley, kale, and other greens) (I use a juicer to make a "mash", then press the juice in a hydraulic press through a filter cloth)
- High-dose fish oils or plant-derived EPA and DHA (fish oil is best for autoimmune sufferers) (I'm taking 4 Omega-Pure 780 caps a day)
- Beneficial bowel flora (A very potent one he recommends is VSL #3) I haven't resumed this
- Natural anti-inflammatory herbs such as turmeric, quercetin, ginger, and bioflavanoids
- Multivitamin/mineral, plus additional vitamin D supplementation
- Supervised water-only fasting, used periodically, if necessary
- Dietary avoidance of salt, wheat, and oil (I was doing this anyway)

to which I've added no grains / no soy. I've NOT resumed the probiotics (though I still have some VSL#3), I didn't want to change too many things at once. I know some folks here say probiotics were counterproductive. When I get my weight and strength up I may do some short fasts.

One of my standbys is acorn squash with sweet potato, the two together are very good.

[tex]

Hi Dave,

It's good to hear that you're doing so much better. I hope that your progress continues.

Thanks for the update,
Tex

[ldubois7]

My Enterolab results were not as high as yours (about 1/2 of your scores, which is still HIGH!). And I had reactions to all 11 foods tested.... I was grain free for 2 1/2 months, then I thought maybe the nuts were becoming problematic. I reintroduces grains...sorghum, millet, quinoa, but reacted to all of them. I did alright with buckwheat and Teff flour, then added sunflower seed butter. I am still not getting the desired results as far as norms, so I am thinking that the buckwheat flour has too much fiber. It's so hard to find an alternative flour that is low in fiber. As my day goes on I start to bloat, which continues until the next morning. I don't eat fruit, and just cooked carrots occasionally. I stopped all supplements, and only take Allegra. I mainly eat 3 meats, a muffin, and a nut butter cookie (no sugar, and all tested ingredients).

Is the bloating just part of the healing process?

I am hungry through the day, and wondered if I could add some corn flakes for a snack? On Enterolab corn was my least reactive grain, but a 2+. I need something with low fiber to keep me feeling fuller.

I have been at this for about 5 months, and have seen improvements in my overall health. It's the bloating that makes me uncomfortable.

Thanks!

[tex]

Is the bloating just part of the healing process?

It's a frustrating problem for some of us. It's not typical, but it's not uncommon, either. Bloating is usually the result of fermentation caused by poor digestion. Poor digestion can be caused by many issues, but a common cause is inadequate stomach acid. Lipase can also be a problem. Lipase is primarily produced by the pancreas, but it's also produced in the mouth and the stomach. If lipase is deficient in saliva and gastric fluids, then digestion will get off to a slow start, and if stomach acid is deficient, poor digestion is almost a certain result.

Since the stomach and intestines provide a warm, moist, environment, if digestion is compromised, so that the digestive process does not proceed on schedule, many/most types of food can quickly begin to rot and/or ferment, producing gas and bloating. And of course since sugar is necessary for fermentation to proceed, carbs (or sugars) are more likely to cause bloating problems than proteins or fats.

Any digestive system syndrome that causes enteritis (intestinal inflammation), will lead to reduced enzyme production, especially in the small intestine. The first enzyme that will be lost is lactase (that's why everyone who has enteritis quickly becomes lactose intolerant), and when the inflammation ends, and enzyme production begins to recover, lactase will be the last enzyme for which normal production will resume. The longer the duration, and the more severe the level of inflammation, the greater the number of enzymes that will be progressively lost. This obviously leads to serious digestive difficulties, so it's no wonder that bloating and D are the main GI symptoms of MC. And as healing begins to occur, and the inflammation fades away, the production of the various enzymes that were lost will be slowly restored, in reverse order of the order in which they were lost.

In some cases where severe damage has occurred, especially over extended time periods, full enzyme production may not be completely restored, but usually recovery is sufficient for all practical purposes. And it's a fact of life that as we age, enzyme production capacity diminishes as a normal side effect of aging, so sometimes even some otherwise "normal" people have to adjust their diet in order to compensate for enzyme production issues.

The bottom line is, you may possibly still be somewhat deficient in several enzymes, due to extensive initial inflammation and/or slow healing but the problem should continue to diminish as healing progresses. As best I can recall, I had occasional bloating for at least a year or so during my recovery.

Regarding corn, considering that your overall score on the 11 reactive foods test was 60, if I were in that situation I would be afraid to eat any 2+ foods more than once or twice a week (IOW, a 3-day rotation might be OK, but eating it every day might be asking for trouble).

I hope this is helpful.

Tex

[ldubois7]

Thanks, Tex!

I tried digestive enzymes, but the papaya and whatever other fruit ingredients were in them didn't work for me....and that was an allergy free supplement, so I haven't been taking them.

Maybe I should try a tablespoon of vinegar? I do chew my food a lot before swallowing.

Regarding the corn question....my Enterolab score on the 11 reactive foods was 30, which was half of what LCDave's was...but still high, I know.
The other two grains tested were 3+. So, maybe I could try corn flakes on a three day rotation...