Deb's Enterolab Results are in

[DebE13]

It's finally back and I'm relieved and say that soy has to go. It will be interesting to see what my GI has to say since he requested the results also.

Anti gliadin 43 units
Anti casein 18 units
Anti ovalbumin 10 units
Anti soy 17 units

A few questions:

I think I originally interpreted the chicken egg results incorrectly. It means EGG only right? I can still eat chicken? I'm struggling to add extra protien to my diet and eggs & chicken were a big part of it.

It sounds obvious but I want to double check- turkey is not in the above "chicken" catagory right? I tolerate turkey much better (taste wise) than chicken. I've been eating lots of GF turkey brats to get in extra protien but now have to go back and check if there's any soy in them. Sigh.

I'm a bit nervous now about all the other foods I'm eating since soy has been part of my menu daily for years and I never had a clue that it was causing problems. I regret not having the Panel C testing done but it didn't fit into my budget. I've been GF/DF since November so removing eggs & soy shouldn't be such a big deal. However, the "So Delicious" coconut milk didn't taste so delicious in my coffee this morning. I guess I'll have to develop a taste for it. What is my best course of action right now? Eliminate the four groups listed above and see what happens? Or use a more restrictive diet for the time being? (not sure what that would be)

I'm presently tapering off prednisone so I can't use D as gauge if my diet is on the right track. There are certain foods I can "feel" don't agree with me but I'm worried about the ones I don't know about. I'm at 10 mg right now and have to call in next week for a lower doseage but historically the D returns when I go under 10 mg so I'm even more stressed about what I'm eating. What if all the nuts, legumes, corn, etc. are causing problems and I don't know it?

[Martha]

Oh, Deb, it's hard to give up more foods, but good to know for sure. Soy is a hard one to eliminate, because it is in so many things that you wouldn't expect. A year after going soy-free, I still have frozen tempeh in my freezer that I just can't bring myself to throw away. I really loved tempeh.

Coffee used to be a vehicle for cream and sugar. Now I drink it black. I have some So Delicious creamer that I bought to use as a treat, so I'm used to the coffee black now, and prefer it that way. If you're using just the coconut milk in your coffee, try the creamer.

If you are having D right now, I'd probably go the elimination diet route: a very restricted diet for a couple of weeks, then add things in. I say that, although that's not what I did. When I found out I was intolerant of dairy and soy, I was already controlling the D with being gluten-free and eating coconut, so I just eliminated the dairy and soy. A couple months later I cut out all legumes. I have tried eating green beans and peas, but got a slight reaction, so I'm holding off on trying those again until I heal more. I hope I can eventually eat some legumes, but not soy.

Martha

[tex]

Hi DebE,

You're correct, the ovalbumen is the egg white, and that test result has no implications one way or the other, regarding chicken. Most of us can tolerate turkey, even if we happen to be sensitive to chicken, so the odds say that you should be good to go with turkey.

In addition to avoiding all foods that show a positive result to an Enterolab test, we have to avoid artificial sweeteners, (and it's usually best to limit natural sugar, as well, to prevent aggravating the leaky gut syndrome, and to minimize the risk of a yeast overgrowth). We also do best if we minimize all sources of fiber, and avoid virtually all fruit except bananas. (Most fruits, and a lot of veggies, are loaded with fiber, especially the peel.) Veggies should be peeled, over-cooked, and eaten in relatively small amounts. Many vegetables are best avoided, (because many of us react to them), such as lettuce, (particularly iceberg lettuce), tomatoes, chiles, (peppers), and onion. After you've been in remission long enough to allow some healing, you can begin to experiment with adding raw fruits and vegetables back into your diet, (slowly, and in small amounts at first, of course).

Typically, if we eliminate those major food allergens, our symptoms will diminish, because even if we are sensitive to secondary foods, the immune system will concentrate on the major food-sensitivities first, (beginning with gluten), and it takes a while for those antibody levels to diminish, so ti takes a while before the immune system will even recognize any additional problems, (if they exist). Also, remember that it takes a whole for the diet to work, because the gut has to do some healing before normal digestion can resume. Typically, many of us find that after a month or so we may see dramatic improvement, and then our symptoms return. When that happens, it means that the immune system has discovered another food-sensitivity that we need to avoid, and when we figure out what it is, and cut it out of our diet, we will begin to see improvement, again.

Martha is quite correct about soy - it's in virtually everything. If you are sensitive to soy, then you are probably also sensitive to all legumes, (at least until after you've been in remission for a year or so), and watch out for soy lecithin - virtually all of us who test sensitive to soy are also sensitive to soy lecithin, and that stuff is in a lot of otherwise good products.

Good luck with the diet, and do you mind if I add your test results to our collection?

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

Tex

[draperygoddess]

Deb,

Well, it's a happy/sad thing: you know what you react to (everything, apparently!), but that means you can't eat it. If your symptoms aren't under control, I would agree that going VERY simple might be the best bet. Once you're feeling better, you can start adding things back in gradually and see how you do.

I also would second Tex's assertion that healing can take a long time. I was not officially diagnosed with MC because my lymphocyte counts were elevated, but not enough for the diagnosis. Still, after over 4 months on a GF/DF diet, and soy-free except for lecithin, and a couple of months of no potatoes either, my system is still very sensitive. Too many veggies, or too many rice chips, or salad more than once a week or so, and I'm miserable. The D is gone, but stomach pain is still hanging around. Just take it easy and give yourself a chance to heal and actually feel good!

[Lesley]

Hi,
Cynthia is wrong. You are not sensitive to everything. So far you can still eat chicken, turkey, duck, potatoes and rice until proved otherwise. And I hope it isn't proved otherwise.
The only thing I can eat of the above is potatoes.

I would go very simple so you can see if anything you add causes D again.

Like Cynthia the D has stopped, but I have constant stomach pain, sometimes worse than others. I literally feel as if I have been punched in the belly, I'm exhausted, and have NO strength.

Unfortunately it's trial and error. No other way to go about it.

[DebE13]

Martha- thanks for the encouraging words. What does coconut do to help? I don't often have D now because I'm on prednisone so often it's hard to tell if what I'm eating is causing problems. Dairy is easy since I get an immediate stomach ache and feel rotten for a couple of hours. That's why I'm so concerned right now because I'm close to the dose where the D is going to return and if I keep unknowingly eating foods that are bad for my system, I may not be able to control the D.

Tex- I don't mind at all if you use my results. Thanks for all your information.

I don't eat anything processed or with artificial sweeteners so that's not a problem. I have a hard time with the fruits and veggies, though as they used to be a major part of my diet. It's also a mindset that I have to eat them in order to be healthy. Is taking a multi vitamin sufficient to replace what's lost by not eating them? Again, it's hard to tell how the fiber effects my system because of the prednisone.

After being GF/DF since November I have noticed some improvements in my other list of complaints. Primarily, the burning in my eyes and general eye pain have noticably improved and I can now wear my contacts most days. I still have sinus stuffiness that I know is not related to an infection or other medical problem. Most of my fibromyalgia symptoms have subsided (I refused to take any drugs for that diagnosis) and my fatigue issues are not quite so bad. Oddly enough, the biggest problem is with my eyes. Most people think I'm nuts when I say that I have food issues that cause my eyes to hurt. I no longer feel the constant nausea and I have less stomach aches.

Right now I generally go to the bathroom 3x in the morning with what I'd consider normal but soft BMs. I can live with that. But I'm afraid of what will happen when I taper the prednisone further and I there is no choice there. I CANNOT contiue with it. I've mentioned earlier to you that I eat a ton of peanutbutter and legumes. Since it seems likely that I should eliminate that too, I'm at a loss for what's left to eat aside from meat. Prior to these issues I ate a mostly meat-free diet. Won't I cause more problems nutritionally if I don't have more in my diet? I'm riding the fence a bit and know it. I want to get better but still eat foods that are damaging to my system. Not too long ago I asked my GI if I could just stop eating all together in hopes of getting better. So I should be thankful that I'm finding the causes so it can hopefully be corrected.

Would nuts go along with the probable legume catagory? They are also a staple in my diet.

Thanks again for all the good information. I'm feeling a bit pouty today but am thankful that even though I have a long ways to go- I at least have hope.

[Lesley]

Deb,
When you get this sort of news it's difficult. I panicked in the beginning. Afterwards I started to get creative.

First, May I suggest that you make sure you eat ONLY grass fed meats and free range chicken. People who subscribe to the paleo diet maintain that grass fed meat contains ALL the nutrients you need, quite apart from the wonderful flavor of the meat.

You can eat chicken. Make GOOD chicken stock, which you can use as a base for a lot of recipes. If you can get chicken feet, backs and heads to make soup with. Cheap and effective. And incredibly tasty. There are recipes all over the web. The only thing you need to know is to bring the feet to the boil and snip off the nails. Then simmer all bones as usual, skimming the soup frequently. Strain, and boil down to reduce. Then add veggies (carrots, onions, celery) and boil more. If you can't eat overcooked veggies do so. If not, strain again. You will see when it gets cold it jellies. You can freeze the concentrated soup in ice cube trays.

Turkey, beef bones need to be roasted for several hours with veggies. Then the fat is poured off, veggies discarded, all the lovely bones and bits scraped into the pot, more veggies added, and the soup simmered for hours, then strained and boiled down to concentrate.
Again, a base for many soups and stews. I just made a borscht with beef stock, chopped cabbage, a couple of beets (I haven't tried to eat them, just the juice in the soup) a little sugar and vinegar for flavor. It's delicious. If I knew I could tolerate beets I would grate them into the soup.

You can eat potatoes, right? When I am feeling horrible I make potatoes mashed with a stock. Now only beef stock, but you can use chicken or turkey stock also.

You can also eat rice, so make some sticky rice with one of the stocks.

You can make a stew, using the stock as base, and eat it with mashed potatoes.

If you can eat coconut milk you can make ice cream. An ice cream machine doesn't cost much (I got a refurbished one very cheaply) and I keep trying new flavors, like lemon and ginger, or with mint.

When you are ready for it you can bake. You have a lot of options given what you can eat for flours for baking. There are so many recipes out there.

Take it slow, and you will find you can make all sorts of things you can eat.

[tex]

DebE,

Peanuts are legumes, but tree nuts are not, so a legume-sensitivity won't necessarily rule out tree nuts. Mesquite trees and locust trees are legumes, so mesquite beans and locust beans are off limits, but those seed pods resemble beans. True tree nuts are safe. If you go to a health food store, you should be able to find almond butter, and probably a few other nut butters, to take the place of peanut butter. The nut butters are usually much easier to digest than the nuts themselves, and they're very nutritious. Spread on a rice cracker, (such as Rice Snaps, by Edward and Sons), they make a healthy and nutritious snack.

It's always best to get our symptoms under control, and then worry about eating a balanced, "healthy" diet, later, after we are in remission, because as long as we have active MC, we're probably not absorbing many vitamins and minerals at normal levels, anyway. A few months on a very restricted diet is not going to cause any major nutritional problems. Once we get the malabsorption problem resolved, then we can justify trying to fine-tune our diet to get the vitamin and mineral levels back to where they should be. The main supplements to take in the meantime, are vitamin D, and vitamin B-12, because those are vital for immune system health.

The bad news is, in all honesty, with a sensitivity to soy, it is virtually impossible to ingest enough protein on a vegetarian or vegan diet, to recover from the disease, because it takes a lot of protein to promote the healing necessary to control MC. We have many members who were once vegetarians or vegans, but I'm not aware of any who had a soy-sensitivity, who were able to find a way to eat a healthy diet without adding fish, and/or meat of some form, as a source of protein.

If you have been following a vegetarian lifestyle for at least several years, there is a very high probability that you may have a B-12 deficiency, already, unless you have been taking a significant B-12 supplement. B-6 and B-9, (folic acid), are also important, so if you can find a good "B" supplement that contains at least those items, that's free of all your sensitivities, then it might be helpful to take. Be careful, though, because many of us have had our recovery frustrated by vitamins that contained traces of ingredients that cause us to react. The most important one, by far, is B-12, because one can develop anemia, if it becomes depleted too far.

One option for using a corticosteroid long enough to give the diet enough time to work, would be to phase in Entocort, as you phase out prednisone, because Entocort is as effective as prednisione, for treating MC, but it carries only a fraction of the risk of the side effects of prednisone, because less than 19% of it is absorbed into the bloodstream. Entocort doesn't become activated until it reaches the lower third of the small intestine, and the colon, whereas prednisone is a systemic corticosteroid. Of course, your doctor would have to be willing to write a prescription for Entocort, and whether or not he or she would be willing to do that, depends on how knowledgeable he or she is about these drugs. Many doctors mistakenly believe that prednisone and Entocort carry the same risks, but that's not an accurate assessment - Entocort is much safer to use, especially at maintenance dose levels.

Tex

[DebE13]

Cynthia- thanks for the encouraging words. Patience is the hardest part but when I look back at the past couple of months, I have seen improvement and now that I know of more foods I shouldn't be eating I can look forward to more improvements.

Lesley- I love all of your suggestions. I'm really not sure if I can eat potatoes and rice but I have been regularly. I'm not sure how to tell if those foods are bothering me or not along with others that are not part of Panel A testing. Time will tell once I'm off prednisone but I need to remember to take baby steps. I just have to get into a new mindset of what I can and can't eat. Last week I found some wonderful waffles that I could eat but now found they have soy so now I can't. I know it will get easier once it becomes more natural and I don't have to think so hard about it. I told myself I would do whatever it takes to get better so I suppose I should stop whining about it

Thanks so much for all the support.

[Lesley]

Deb,
Base your meals on meat and potatoes for a few days. That's all! If things don't improve, drop the potatoes. Eat ONLY meat or white fish for a couple of days(I know it's hard!). Maybe add some canned fruit for sweetness. Then add in rice for a couple of days and see what happens. In a week or so you should be able to tell. Then you can go from there.

I made a carrot bread - delicious. My son, who has also gone gluten free, ate half of it. Flours I used - sorghum and oatmeal flour.

[brandy]

Hi Deb,

I'm glad your eyes are improving! I agree with you that the "sandpaper" eyes are extremely irritating. Mine are finally getting better. I keep telling myself that the healing takes time. Brandy

[Martha]

Deb, coconut is used throughout Polynesia as a treatment for diarrhea. I found out about it when my doctor told me that one of his patients was eating 2 coconut macaroons a day to control her D. I went right out and bought some, then did an internet search. The macaroons helped me, but they are really sweet, so I decided to just eat unsweetened flaked coconut rather than cookies. Of course, if you should happen to be sensitive to coconut, it won't help you.

I also use coconut oil for most of my cooking now. It's really good. I buy LouAna brand pure coconut oil. It's not as expensive as virgin coconut oil, and also doesn't have the coconuty flavor.

[DebE13]

Martha- I never heard of that before but I'm up for trying anything that could help. How much do you eat in a day? I buy coconuts fresh and keep chunks or peels of it in the freezer.

[Martha]

I eat about a tablespoon of dried flaked coconut with breakfast. I don't really measure it carefully; I just grab a big pinch from my tupperware container.

I'm surprised you can get fresh coconuts in Wisconsin. Does it keep well in the freezer?

[Lesley]

Martha,
I made granola a few days ago, and added unsweetened coconut. It's delicious!