Results, finally... and lots of questions

[Joni T]

Hello, fellow MC-ers! I got my long-awaited Enterolab results today. Since I found this forum 4 -5 weeks ago, I’ve pretty much limited my diet to white rice, chicken, beef, sweet potato, bacon, eggs, rice chex,, almond and coconut milks, and collagen powder made from grass-fed beef.

My results on the 11 tested foods look like this:

Fecal Antigliadin: 61
Fecal Anti-casein: 31
Fecal Anti-ovalbumin: 12
Fecal Anti-soy: 29
Mean Value 11 Antigenic Foods: 47 Units
No Reactivity: white potatoes (I’ve only eaten them once in the past month)
+1 Reactivity: Rice (I have been eating this every day)
+2 Reactivity: Oat, Chicken, Beef, Pork, Cashew, Walnut
+3 Reactivity: Corn, Tuna, Almond (I have eaten almond milk daily, but haven’t had tuna in many years.)

I have a lot of questions, even after reading posts here for HOURS over the past few days!!

1) EGGS: I have been eating eggs daily for breakfast because I know I need protein, and I have trouble getting down a good-sized portion of meat early in the day. Since I scored 12 on the eggs (10 is normal), is it worth continuing with them? I feel that the benefits outweigh the risks on this one, but maybe I’m wrong! The eggs don’t seem to be a problem because since staring the phase 1 diet (except for a stretch of 13 days after I drank lactulose for the SIBO test) I’ve been having pretty reliable formed stools. But yes, I’m on 6mg of budesonide. I think I read that this will mask any food sensitivities. So should I avoid eggs completely, eat them every day, or maybe every other day?

2) RICE: The rice was a +1. Does this mean I am OK with having it once in a while, but not every day? Or does it mean that now that I’ve eliminated all of the +3 foods, I’ll be OK with the rice in small quantities daily? (I assume there is a cumulative effect with these foods).
There was a reference in one of the posts to a Newsletter that Tex had posted. The person who posted it quoted this: “If the overall score is significantly higher (in the 20s or 30s, for example), then probably all of the foods ranked as 1+, 2+, and 3+ should be avoided, at least during recovery.” I didn’t run across an explanation of this concept in any of the many forum posts I read, so where can I find this newsletter? I’ve looked through a lot of the newsletters but didn’t see anything like this.

3) ALMONDS are on my +3 list. I’ve read that most people can tolerate almond MILK even if sensitive to almonds. Is this true even when the sensitivity is a +3?

4) MILK: Since Rice milk, oat milk, soy milk and cashew milk are all “out,” is there any sense of general success with Flax milk? I like Coconut milk, but I know the gums and thickeners are hard, and the combination of those things in coconut milk varies by the brand. Is there any brand of coconut milk (aside from the expensive canned milk) that has fewer problematic additives?

5) NUT BUTTER: from what I understand, peanut butter and almond butter are “out” for me. Has anyone had experience with Macademia nut butter? I have used this to make nut butter cookies for my grandchildren in the past and thought it was delicious.

6) TURKEY: I spent 2 hours in the store today reading labels. I could find NOTHING in the way of turkey meat that didn’t list the “rosemary extract” (that I’ve learned from you wonderful people) contains soy. How can I find turkey to eat? Would freshly-sliced lunch-meat from the deli be an option? The man behind the counter showed me the label… lots of ingredients, but no rosemary extract.

It’s easy to be discouraged, and I was at first. I shed tears at the thought that my whole 5 weeks of “stage one” actually consisted of eating the foods that are the biggest problems. But a little perspective allows me to say “at least I wasn’t over the top on eggs” and “I can start eating white potatoes and I really like hashbrowns!” Now I can get serious about this diet because I know (or I will, with your help) what to eat.

Thank you for this forum. It has been a sanity-saver to have tried and true information, and a community that understands the battle!

[tex]

1) EGGS: I have been eating eggs daily for breakfast because I know I need protein, and I have trouble getting down a good-sized portion of meat early in the day. Since I scored 12 on the eggs (10 is normal), is it worth continuing with them? I feel that the benefits outweigh the risks on this one, but maybe I’m wrong! The eggs don’t seem to be a problem because since staring the phase 1 diet (except for a stretch of 13 days after I drank lactulose for the SIBO test) I’ve been having pretty reliable formed stools. But yes, I’m on 6mg of budesonide. I think I read that this will mask any food sensitivities. So should I avoid eggs completely, eat them every day, or maybe every other day?

Just because eggs are a great source of protein shouldn't give them a free pass to a recovery diet. You're playing with fire here, because most of us couldn't get away with eating eggs when an EnteroLab test shows that we produce antibodies against them. When your Budesonide treatment ends, you will find out whether your diet is actually safe, or not, and if it's not, you may have to start over. Incidentally, while I don't generally recommend it during recovery, a much safer rotation interval is once every three days

2) RICE: The rice was a +1. Does this mean I am OK with having it once in a while, but not every day? Or does it mean that now that I’ve eliminated all of the +3 foods, I’ll be OK with the rice in small quantities daily? (I assume there is a cumulative effect with these foods).
There was a reference in one of the posts to a Newsletter that Tex had posted. The person who posted it quoted this: “If the overall score is significantly higher (in the 20s or 30s, for example), then probably all of the foods ranked as 1+, 2+, and 3+ should be avoided, at least during recovery.” I didn’t run across an explanation of this concept in any of the many forum posts I read, so where can I find this newsletter? I’ve looked through a lot of the newsletters but didn’t see anything like this.

The newsletter you're probably referring to can be read or downloaded at the following link:

https://www.microscopiccolitisfoundatio ... 479987.pdf

3) ALMONDS are on my +3 list. I’ve read that most people can tolerate almond MILK even if sensitive to almonds. Is this true even when the sensitivity is a +3?

To date, I don't recall seeing any exceptions. Unless the added gums are major problem, most of us can tolerate almond milk. And if we can't tolerate commercially processed almond milk, we're almost always able to tolerate homemade almond milk.

4) MILK: Since Rice milk, oat milk, soy milk and cashew milk are all “out,” is there any sense of general success with Flax milk? I like Coconut milk, but I know the gums and thickeners are hard, and the combination of those things in coconut milk varies by the brand. Is there any brand of coconut milk (aside from the expensive canned milk) that has fewer problematic additives?

Most coconut milk (except for the canned 100% coconut milk) contains various additives. The added expense of buying safe foods compared with buying "probably safe", or "may be safe" foods is negligible. Our food is our medicine. Most prescription drugs are ridiculously expensive compared with even premiun-priced foods. If your Doctor wrote a prescription for that canned coconut milk, you probably wouldn't hesitate to spend the money. Or am I wrong?

5) NUT BUTTER: from what I understand, peanut butter and almond butter are “out” for me. Has anyone had experience with Macademia nut butter? I have used this to make nut butter cookies for my grandchildren in the past and thought it was delicious.

These are uncharted waters (because there are never any guarantees with MC), but macadamia nut butter is probably safe for virtually all of us.

6) TURKEY: I spent 2 hours in the store today reading labels. I could find NOTHING in the way of turkey meat that didn’t list the “rosemary extract” (that I’ve learned from you wonderful people) contains soy. How can I find turkey to eat? Would freshly-sliced lunch-meat from the deli be an option? The man behind the counter showed me the label… lots of ingredients, but no rosemary extract.

is there any a Publix store available? They usually have an Italian ground turkey that doesn't have rosemary. It's the Publix brand. And surely there are others, if we can only find them. Sometimes an Internet search can offer clues.

It’s easy to be discouraged, and I was at first. I shed tears at the thought that my whole 5 weeks of “stage one” actually consisted of eating the foods that are the biggest problems. But a little perspective allows me to say “at least I wasn’t over the top on eggs” and “I can start eating white potatoes and I really like hashbrowns!” Now I can get serious about this diet because I know (or I will, with your help) what to eat.

Most of us probably have similar experiences while recovering. This can be a frustrating and discouraging disease to control, and virtually all of us have an occasional bad day or two sprinkled in among the better/good days, and that tends to be depressing. But after we gain control, our outlook on life in general is usually much better, and so is our long-term health. I'm not sure that I'm glad that I developed MC, but I will say that I'm confident that the diet changes it forced me to make have surely benefited my longevity, and my quality of life because of my improved long-term health.

Tex

[Joni T]

Thank you SO MUCH, Texas, for that link to the newsletter, and for your patient reply!

The newsletter explained the concept that there isn't any "middle ground" in these food sensitivities... that I will certainly need to eliminate everything that I'm reacting to even slightly, in order to begin the healing. I didn't understand that until I read the newsletter, so I'm thankful.

So it's out with eggs and rice, the two things I thought I could "get away with." An hour ago I finished my first meal (ever) of duck. I liked it! (I was afraid I wouldn't! ) so now I have a meat I can eat along with shellfish and potatoes. I'm feeling thankful. There are no Publix in Wisconsin at all, so I'll start looking online for turkey and see where it leads. Our local store had duck breasts on sale,.and my husband is on his way there right now to buy them up!

I do have another question. Now that I know what I can't eat and have eliminated them from my diet (as of 2 hours ago), do you or others have a recommendation about the budesonide taper? I have been on 6mg for 5 weeks,.except for 4 days back in late November when I had constipation and reduced to 3mg. (The lactulose I drank for the SIBO test the next day solved the problem of constipation so well that my dr suggested going back up to 6mg.) I've been diahhrea-free for 10 days and intend to eat no more of these problem foods. I understand that the budesonide is masking any negative food-effects,.so.... should I try to get off it as fast as I can reasonably taper? Or do I want to taper VERY slowly, down to one pill every 5 or 7 days to continue to get the benefit of it? (Is there actually a benefit?)

Joan

[Joni T]

Thank you SO MUCH, Tex, for that link to the newsletter, and for your patient reply!

The newsletter explained the concept that there isn't any "middle ground" in these food sensitivities... that I will certainly need to eliminate everything that I'm reacting to even slightly, in order to begin the healing. I didn't understand that until I read the newsletter, so I'm thankful.

So it's out with eggs and rice, the two things I thought I could "get away with." An hour ago I finished my first meal (ever) of duck. I liked it! (I was afraid I wouldn't! ) so now I have a meat I can eat along with shellfish and potatoes. I'm feeling thankful. There are no Publix in Wisconsin at all, so I'll start looking online for turkey and see where it leads. Our local store had duck breasts on sale,.and my husband is on his way there right now to buy them up!

I do have another question. Now that I know what I can't eat and have eliminated them from my diet (as of 2 hours ago), do you or others have a recommendation about the budesonide taper? I have been on 6mg for 5 weeks,.except for 4 days back in late November when I had constipation and reduced to 3mg. (The lactulose I drank for the SIBO test the next day solved the problem of constipation so well that my dr suggested going back up to 6mg.) I've been diahhrea-free for 10 days and intend to eat no more of these problem foods. I understand that the budesonide is masking any negative food-effects,.so.... should I try to get off it as fast as I can reasonably taper? Or do I want to taper VERY slowly, down to one pill every 5 or 7 days to continue to get the benefit of it? (Is there actually a benefit?)

Joan

[tex]

We apparently are in disagreement with your doctor. For anyone following an elimination diet, once the dosage is reduced because of constipation, the dose should not be increased again just because the constipation was resolved.

In order to complete a budesonide treatment without a relapse, we suggest that the tapering process should go way past one capsule per day for a few weeks. After a couple of weeks at one capsule per day, the dose should be decreased to a capsule every other day for a couple of weeks, followed by a couple of weeks and one capsule every third day, then every fourth day, etc., until you feel that you are securely in remission. This additional tapering prevents the mast cell rebound effect that causes over 80% of MC patients to relapse when the budesonide treatment is ended.

Tex

[Joni T]

I should have explained that better! After I had to drink the lactulose for that SIBO test, I had LD with gas and incontinence that lasted about 2 weeks and nothing I could do would control it (I was eating only rice and chicken, which I now know are both problems). To get it stopped,.my doctor suggested going back to 9mg. (Even that did not control it... I eventually had to do a complete fast.)

I do understand the concept of a very very slow taper, but my question is really about how to get from here (9mg) to 3mg. My symptoms are under control now, and I now have a clear picture of what to avoid and what I can eat. Is there a length of time I should be at 9mg before dropping to 6? My doctor is thrilled about the existence of this forum and is happy to prescribe whatever I think I need. I just wonder what is the most helpful way to taper. When do I drop from 9 to 6, and how long at 6 assuming my symptoms stay managed with the diet?

Maybe there's a newsletter that gives details so you don't have to repeat something that's already published?

[tex]

Most doctors appear to prescribe either two months or three months of total budesonide treatment. And normally they recommend equal treatment times for each dosage level. In other words, 20 or 30 days at each dosage level. If you develop constipation, drop down to the next dosage level. If you don't develop constipation, follow the doctor's prescription directions for dropping to the next dosage level.

For all practical purposes, when you went back up to 9 mg per day, you restarted the budesonide treatment.

Tex