Plan of Action

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terre
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Plan of Action

Post by terre »

Please Help!

I was diagnosed in May with MC and 6/25 started with a retired NP who is also a nutritionist (who also believes in trying natural before meds).

She has me on GF diet with supplements from health food store...plus vitamins....plus extra virgin olive oil and coconut oil.

We have done testing for the following:

Stool Cu. Fungi, Isol. & I.D.
Ova & Parasites, x3 (Stool)
Bacterial Stool Cu.
Campylobactor Antigen
Shiga Toxins 1 & 2 (Stool)
C. Diffiile: Toxins A & B (Stool)
Giardia Antigen (Stool)
Cryptosporidium Antigen (Stool)
Toxoplasma AB, SIgA (Saliva)
Ameba histolytica Ab, SIgA (Saliva)
Helicobacter pylori Ab, IgG (Saliva)
Total Intestinal SIgA (Stool)
Intestinal Lysozyme (Stool)
Alpha Anti-Chymotrypsin (Stool)
Chymotrypsin (Stool)
Occult Blood (Stool)
Fecal pH
Milk (Casein) Ab. SIgA (Saliva)
Soy (Protein) Ab. SIgA (Saliva)
Egg (Albumin) Ab. SIgA (Saliva)
Gliadin Ab, SIgA (Saliva)
Roundworm (Ascaris lumbricoides) SIgA (Saliva)
Trichinella sprialis SIgA (Saliva)
Tapeworm (T. solium) SIgA (Saliva)
terre
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Post by terre »

Sorry, I didn't get finished....the lab were not through Enterolab (I did not know about them till I found this site).

Anyway, I am not getting better and I think I need a new plan of action.

What other testing do you think I should order from Enterolab....I would like to avoid retesting what I have already been tested for due to $$$$ (expensive).

I admire the NP and think she is truly trying to help, but I have to face the fact that this wonderful site is has/is experiencing the same disease as I am and I think that speaks volumes as to witnessing what has helped others.

So, I'm asking if you would please give me input as to what my next steps should be. Thank you in advance and I so appreciate this helpful, caring site.

Terre
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tex
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Post by tex »

Terre,

You left out a couple of very important items. What were your test results for gluten, casein, soy, and egg, and are you avoiding any of them in addition to avoiding gluten? What supplements are you taking?

One of the problems we typically see with NPs is that they tend to recommend way too many supplements for most MC patients. In general, the more supplements we take while we are trying to recover, the lower our chances of recovering, because some of those supplements will virtually always contain ingredients that either cause us to react, or tend to perpetuate an existing reaction.

Thank you for the kind words. Hopefully, we will all be able to put our heads together and figure out what is preventing 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.
terre
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Post by terre »

The results are as follows:

Milk (Casein) - Positive
Soy (Protein) - Negative
Egg (Albumin) - Negative
Gliadin (I assume this is gluten) - 12 Negative...the Reference Values / Key are Borderline: 13-15 U/ml and Positive: >15 U/ml
(NP says she would consider me gluten sensitive because I am almost borderline)

The supplements I am taking (*or have taken in the last 6 weeks):

Oil of Oregano
*Olive Leaf (I no longer take)
Probiotics (100 billion per day)
Pau D' Arco
B Complex
Vitamin D
*Multi-Vit (I no longer take after reading on site)
Infla Therm (for inflammation)
Garlic
Extra Virgin Olive Oil (2 Tbsp.)
Coconut Oil (1 Tbsp.)

Thanks for looking over this and giving me your thoughts.

Terre
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Post by terre »

I didn't finish answering your question about what I've been avoiding.

I am following the GF diet and I am trying to avoid milk products....but from what I read, that is not enough because Casein is hidden in so many products. I am still having soy and eggs.

I have lost 6 lbs. since starting this eating plan, but I think that is due to cutting out sugar....which I miss tremendously!!!!!

Thank you,
Terre
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Post by tex »

Terre,

Saliva tests may be useful for detecting food allergies, but they are not likely to be reliable or sensitive enough for detecting the type of food sensitivities that generate inflammatory reactions in the intestines. Obviously, I can't guarantee that those food sensitivity results are incorrect, but frankly, other labs have such a poor reliability record for food sensitivity testing that if I were in your situation, I would either avoid all those foods (100 %), or I would order the EnteroLab stool tests to remove any doubt. The antibodies are produced in the intestines, so that's the correct place to look for them.

The problem is that if you continue to eat a single food to which you are sensitive, all your efforts to avoid all the rest will be for naught, because any one of them can prevent you from achieving remission if it remains in your diet. And for some of us, combinations of certain foods and/or supplements can sometimes trigger a reaction. Compliance with the diet is tough, very tough, but it gets easier as we become accustomed to it, and it is truly our best hope (maybe our only hope) for full remission, and good long-term health.

I agree that NPs listen to their patients and tend to empathize with them much more so than the average MD. If anything, they try to be too helpful, and often overdo the treatment recommendations. I don't want to be in the position of advising you not to take supplements that a doctor told you to take, but if I were in your situation, I would take the vitamin D (after checking to make sure that it did not contain any ingredients which might cause me to react), and I would cook with liberal amounts of EVOO and coconut oil, but I would be afraid to take all those supplements until I was safely in stable remission.

For example, very few of us are able to tolerate a probiotic while we are still in the recovery stage. And among those who can tolerate a probiotic, fewer still have noticed any benefits from taking one. After we are in remission, we're much more likely to be able to tolerate such things. But after we're in remission, we may not need such supplements, because we'll be able to expand our diet, soon after that.

Sugar was a major problem for me, also, because I ate a lot of it for most of my life. After I began my recovery, I found that I couldn't tolerate any more than small amounts of almost any type of sugar, without getting into trouble. The diet also means fewer carbohydrates, for most of us, and that helps to shed more pounds, too.

Tex
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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.
terre
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Post by terre »

Tex, thank you for replying.

So, do you think going cold turkey on all but the Vit D would get me into trouble....or should I taper off? Would you recommend any of the B vitamins or wait until remission? As far as the Vit D, I read some discussion about sublingual...is that what I should get?

I looked at the Enterolab site, but am confused as to which tests I would need....and then there's the expense. I'll take another look at their site.

Thank you!
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Post by tex »

Terre,

Virtually any drugs or supplements except for corticosteroids, narcotics, antidepressants, and anti-anxiety medications can be stopped without causing withdrawal problems, but you can certainly taper the doses if you prefer.

If you have been reacting for years, you might need vitamin B-12, which is best taken as a sublingual lozenge, designed to be dissolved under the tongue. Such a lozenge that contains 1,000 mcg of B-12 and 400 mcg of folic acid contains a proper balance so that the body can utilize the B-12 optimally.

I've never tried sublingual vitamin D, but I'm sure that it would be more effective. That is, it would be more easily absorbed, so that a lower dose would go farther.

I didn't use any EnteroLab tests early on (mostly because I wasn't aware of them back in those days), so I just eliminated everything except for a few simple, basic foods that my trial and error testing had indicated would be safe, and I stuck with that diet long enough for my gut to heal.

You've very welcome.

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.
terre
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Post by terre »

Oops! I thought I read about sublingual Vit. D on this site....I don't know if such a thing really exists! So which Vit. D do you recommend?

I'm still confused as to which testing I would need from Enterolab:

Panel A & C: Comprhensive Gluten-Antigenic Food Sensitivity Stool Panel
Panel A: Gluten / Antigenic Food Sensitivity Panel Limited
Panel B: Gluten / Antigenic Food Sensitivity Stool / Gene Panel
Panel C: Antigenic Food Sensitivity Stool Panel
(Then you can add Anti-Tissue Transglutaminase Antibody to Panel A, B, or C)
Panel D: Digestive Health Panel
Panel E: Gluten Sensitivity Stool Panel

This is all new to me...so which is most beneficial?
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Post by tex »

I didn't mean to imply that there's anything wrong with sublingual vitamin D, I've just never used it myself. I buy various brands of vitamin D, because I'm not sensitive to soy, but most members have to avoid soy, and that makes finding a safe brand a lot tougher.

Maybe someone else can recommend a safe brand from personal experience.

For EnteroLab testing, most members choose either Panel A or B (depending on whether or not they want the DNA {gene} test, which is included in Panel B), because those tests include the most common food sensitivities among the members here. If they have the money available, many choose the combination of Panels A and C, which adds tests for 11 additional antigenic foods, but that's a relatively expensive combination, because it provides tests for so many foods.

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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Post by Leah »

Welcome to the site Terre!
There is a lot to learn about managing this disease and you should know right off the bat that this whole process takes time... especially if you are trying to get well with diet alone. Many of us opt for drugs plus diet changes at the same time because it offers us some relief from the symptoms while the diet heals us. BUT it can be done without drugs. You could do the Enterolab test A and C and that would give you a lot of information to get the best start on your new way of eating. You could also take out all the foods that COULD be giving you problems out, and then down the road ( when you are healed) test each one back in one at a time.

We all have to make our own choices as to how we go about it. Since I am a personal trainer and nutrition specialist, I chose to go on Entocort AND take most foods that are known problems. Gluten, dairy and soy ( I left eggs in) are the biggies. Also while our guts are inflamed, ALL RAW FRUITS AND VEGGIES are too hard to breakdown and will also prevent you from healing. Down the road, yu can est them back in. Fiberous foods should be gone like beans and legumes. Acid foods like tomato products should be gone. Spicy foods also. I decided to also take out all nightshades ( white potato, tomato, peppers, eggplant) because they are known to cause issues. and Caffeine never sat well with me.

You may be thinking "what can I eat?" My early diet consisted of all animal proteins, cooked veggies ( mostly carrots, green beans, squash...), natural applesauce, rice and it's products, corn tortillas and corn chips ( as long as they aren't cooked in canola oil), sweet potatoes, and GF Chex cereals with almond milk. I replaced peanut butter ( soy family) with almond butter (on rice cakes).

This was very hard, but I was feeling so bad and I had to work, so I was ready to do anything. The drugs worked right away to stop the D, but the diet is what hwlped me heal and be able to wean off the drug. Within 6 months, I was off the drugs and i was slowly able to add things back in like small salads, beans, raw veggies, some tomato products, POTATO, and some GF baked products. Fruit is still a problem. Never will eat gluten, dairy , or soy (on purpose) again though.

The thing is is that we are all so different in our food intolerances. Gluten, dairy, soy and sometimes egg are the biggies, but some people can't eat ANY grains and have to go Paleo. Some of us can't eat certain meats... etc. This is a process.

There is also the histamine/mast cell side of the equation, but I didn't go there until I was fine tuning after about a year. If you want the best info, order Tex's Book. It's in the upper right hand corner of this page. Just click on it for Amazon. It's full of helpful info.

I agree with tex on the supplements. The less you take right now, the better. Probiotics make my MC worse, but that is me. Keep your food fresh and simple.

Good luck and keep us posted
Leah
terre
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Post by terre »

Thanks Tex and Leah.

So Leah, green beans don't fall under the "bean" category?

The following is what I've been following:

Sugar: None
Artificial or herbal sweetners: Can have Stevia or Stevia Plus
Fruit: Any
Meat: Fish, poultry, beef, etc.
Eggs: None excluded
Dairy products: The only ones I can have are Yogurt (including goat yogurt), cream cheese, unsweetened whipping cream, sour cream made
with real butter.
Vegetables: Fresh vegetables, excluding potatoes, yams, legumes (beans and peas)
Beverages: Bottled or filtered water, non-fruity herb teas, fresh lemonade with stevia, coffee, tea (including decaf)
Grains: None
Yeast Products: None
Vinegars: Unpasteurized apple cider vinegar, black olives not aged in vinegar
Oils: Olive, grape seed, flax seed, etc. Use cold pressed when available
Nuts: Raw, including pecans, almonds, walnuts, cashews, pumpkin seeds, sunflower seeds, etc.

Meat and fish are better if not corn-fed. Avoid farm-raised fish.
Dairy products are better if from range-fed cattle.
Organically grown vegetables are preferable. Meat, eggs and yogurt should be from animal sources not injected or fed with antibiotics, hormones or steroids nor fed silo-stored grains.

So, after reading several posts, I see potatoes might be okay and fruit and nuts may need to wait. What do you guys eat for ennjoyment....for dessert?

Thanks,
Terre
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Post by terre »

I have ordered the book and can't wait till it gets here next week.

We are going on vacation in September and I've been toying with the idea of going on Entocort just to be able to enjoy our vacation. I'm going to give myself another week before I decide.

The way the GI doc prescribed it would be for me to take 3mg capsule 3 x day and hopefully taper this down to two or even one capsule fairly quickly.

From the experience of those on this site, that would be way to quick and I should taper off very slowly. Can anyone share their experience with Entocort and how they were able to come off and stay in remission?

I know I have lots to learn and my head has been spinning since I was diagnosed....I'm sure the book will help tremendously, along with all that share on this site.

Terre
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Post by maestraz »

Terre,
My GI doctor, and my PCP, both advised me that with LC, "less is more." IOW, the temptation is to try to figure out what meds, what supplements, what foods, what restrictions, will make you feel better when you are feeling so SH-----, but
sometimes the strategy should be to just simplify. My head was spinning with too much information, and I just needed to step back, figure out what NOT to eat, what pills to eliminate. Then to just be patient and understand this was not something I was going to be fixing anytime soon. My recovery (I'm not yet calling it remission) has been a work of progress over two years. I had to abandon any sense of desperation to find the one or two things that would make everything better.
I believe that the simple act of understanding that there were things I would just have to take as they came, reduced the stress that was a likely trigger for me.
Suze
terre
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Post by terre »

Wise words, Suze.

I guess, I worry that if I don't get something figured out to help this situation, that the longer it goes on....the more harm it does to my body.

Did you by chance do any of the Enterolab testing or take any prescription drugs (such as Entocort)?

I will try to take deep breaths and try to quite this turmoil I feel...notice that I said "try". Ha!

Terre
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