Anyone heard of Robert's formula or mucus-inducing foods?

ldubois7 · Post by **ldubois7** » Mon Oct 13, 2014 7:23 am

Hi Tex,

It is a lot of Betaine HCL! I do use the same amount at each meal, because I eat the same thing for each meal day after day....about 4 oz. meat (venison, turkey, elk, lamb) & cooked veggie (squash/carrots), and a sunflower seed butter cookie or macaroon.

I went to the naturopathic doctor because I had plateaued in my healing, and wanted some new food options to help me with my energy level. I wanted testing done that my PCP doesn't do regarding issues related to MTHFR, SIBO etc. to try to see where I'm at, and try to help me continue to heal.

I still have some bloating and gas, but since I've been on the higher dosage of betaine HCL, it hasn't been quite as bad. I still have to eat small meals, so I'm hungry a lot, and don't have many choices. But, I don't want to go backwards in my progress either! It's been a long 2 years!!!

Maybe Ann will chime in with her thoughts!

Post by **tex** » Mon Oct 13, 2014 9:00 am

That all makes sense, so I don't see anything wrong with what you are doing.

I hope that you can find some more clues to fill in some of the blanks, so that you can reach your goal.

Tex

megamoxie · Post by **megamoxie** » Mon Oct 13, 2014 9:07 am

Thanks all, for the advice. I now find myself torn as to whether to pursue the blood test and seeing the naturopath again. At the very least, I will push my next visit out for a while.

As for the wedding... I called the restaurant ahead, and they were very understanding and willing to accommodate. I gave a "to the chef" card, and they prepared a lovely meal of chicken and cooked vegetables, which is generally safe for me. Later, we were driving to our hotel just outside the city, when I started to feel the unmistakable pain. Despite a few anxiety-provoking wrong turns, we managed to get to the hotel and inside our room in the nick of time before my need for the bathroom became extremely urgent. After that I had to get up and go several times, ending with a few rounds of D. I took some Immodium and things seem to have settled for a bit. I will go back to my strict safe zone of foods until I get my Enterolab test results.

I find myself dismayed and discouraged. It had been over 3 weeks since my last episode. I thought I did everything right to ensure safety & success. Maybe they inadvertently included a trigger food? Will I ever be able to trust anyone else to prepare my food? Will I ever have anything approaching a normal life again? I just want to cry.

On the positive side, at least I looked good in my new dress.

megamoxie · Post by **megamoxie** » Mon Oct 13, 2014 9:29 am

Oh, and I did some more research on Robert's formula and found that it contains Echinacea and golden seal, which I have reacted badly to in the distant past. So that is out, as far as I'm concerned.

JFR · Post by **JFR** » Mon Oct 13, 2014 9:31 am

Sorry about the wedding. This might not be what you are wanting to hear, but I don't trust anyone to prepare my food, or hardly anyone. The only exception to that was last Thanksgiving when the child of one of my hosts was gluten and dairy free and from what I could observe the mother was very strict with her food preparation. This was a very pleasant surprise to me since I had been prepared to mostly not eat at the meal. This woman was a friend of my son's. I am hoping I get invited again this year. When in doubt, which is most all the time, I simply don't eat, at people's houses or at restaurants. It takes some getting used to but I've been doing it for a long time and it gets easier with practice. It's all about attitude, my attitude. If I think of this as just something I need to do for my heath it does not feel like deprivation. The thing I have had to work hardest on is not caring what other people think, but I have made great strides with that as well.

I think you are making the right choices about testing. The Enterolab tests are the most reliable and sensitive. I have found the information I got from Enterolab to be invaluable. No blood tests needed.

Jean

megamoxie · Post by **megamoxie** » Mon Oct 13, 2014 9:55 am

The deprivation would not bother me, either. The thing that would bother me is not so much what other people think, but other people commenting on my not eating. If I could do it quietly and unobtrusively, and sneak a safe item to tide me over, I would be fine in such situations. But I do not want to discuss it with (and inevitably argue with, and/or suffer through "helpful" suggestions from) my dining companions. I have a friend with Celiac who says she sort of fakes eating to avoid this, but I haven't seen her do it, nor have I mastered that trick yet.

JFR · Post by **JFR** » Mon Oct 13, 2014 10:14 am

megamoxie wrote:The deprivation would not bother me, either. The thing that would bother me is not so much what other people think, but other people commenting on my not eating. If I could do it quietly and unobtrusively, and sneak a safe item to tide me over, I would be fine in such situations. But I do not want to discuss it with (and inevitably argue with, and/or suffer through "helpful" suggestions from) my dining companions. I have a friend with Celiac who says she sort of fakes eating to avoid this, but I haven't seen her do it, nor have I mastered that trick yet.

Me too. I do not want to discuss my eating habits with anyone. Too many people think they have helpful advice to give. I try not to engage in such discussions. I certainly don't need advice. It does get easier over time.

Jean

megamoxie · Post by **megamoxie** » Mon Oct 13, 2014 10:56 am

It does get easier over time.

I sure hope so! I am feeling very, very bummed out today.

I have a few errands to run this afternoon. While I'm out, I am taking some coupons to go and maybe pick up a couple of clothing items I have been eyeing that may now fit well since I continue to lose weight (the only good thing about this miserable disease, as long as it doesn't go too far). I'm hoping this may help cheer me up a bit, along the lines of the cancer approach "Look good, feel better". We'll see.

Post by **tex** » Mon Oct 13, 2014 12:07 pm

We all suffer setbacks while we are recovering, and though unpleasant, they are learning experiences. As our intestines heal, those accidental reactions occur less frequently, and they become less severe (and they don't last as long). Despite an occasional setback, you can take pride in the fact that:

1. You made it back to your hotel room in time (most of us have memories of occasions when we weren't so lucky

).

2. You are making progress by making good decisions and staying focused, and each day brings you closer to the day when you will be able to recognize that you are in stable remission.

And since shopping trips for new clothes are proven mood-boosters, hopefully you will feel better when you return.

Tex

UkuleleLady · Post by **UkuleleLady** » Mon Oct 13, 2014 12:46 pm

JFR wrote:It's all about attitude, my attitude. If I think of this as just something I need to do for my heath it does not feel like deprivation. The thing I have had to work hardest on is not caring what other people think, but I have made great strides with that as well.

I think you are making the right choices about testing. The Enterolab tests are the most reliable and sensitive. I have found the information I got from Enterolab to be invaluable. No blood tests needed.

Jean

Hi Megamoxie -
I just love what Jean posts so wanted to quote it. ITA with her as far as attitude and with regard to Enterolab. It can seem like a good idea to take supplements, see multiple doctors, try probiotics etc right now but in my experience (I did all that) the best thing was Enterolab.

I do so well at home (and even at restaurants nearby) but everytime I travel, drive to a big event like a wedding, etc., I have a little setback. I think it can be mysterious food but also stress, new surroundings, the intensity of travel. Just a thought.

When we are reacting our gut can't handle supplements, vitamins, etc. Simple is best. I have always been impatient so learning patience was one of the many silver linings I experienced with MC.

Other silver linings are: I'm finally gluten and dairy free forever; I no longer have reflux; I live one day at a time.

I wish you the best for your recovery, all the strength and patience you can muster to get to a better place. It *does* get better. Trust in that. Keep it simple and try to relax.

ldubois7 · Post by **ldubois7** » Mon Oct 13, 2014 6:03 pm

I always have issues in social situations, too. I am like Jean..I don't trust others to prepare my food. I usually eat before I go to social events, then walk around and talk to people while they're eating. It works for me.

megamoxie · Post by **megamoxie** » Mon Oct 13, 2014 6:28 pm

Thanks much to Jean, Tex and Ukelelelady for your support. I, too have stories of when I didn't make it in time (awake or asleep), so I guess that is a victory of sorts. Another positive: I am learning so much here!

The shopping trip was a mixed bag. The things I had my eye on did not work for me, but I found some other things that did. Perhaps that's a metaphor for my journey.

Gabes-Apg · Post by **Gabes-Apg** » Mon Oct 13, 2014 6:33 pm

I can only reiterate

I wish you the best for your recovery, all the strength and patience you can muster to get to a better place. It *does* get better. Trust in that. Keep it simple and try to relax.

just as it takes time for our guts to heal, it takes time for us to mentally adjust to life with MC, the changes we have to make and some of the limitations.

2 years ago I could not eat out. the inflammation levels in my body were so high i could not handle any contamination. something to note, that about 9 months prior to this timing, prior my MC was classed as being in remission!!! albeit i was still having major histamine reactions and other health issues.
In the past 8 months with the right diet, the right supplements, less stress in my life, histamine inflammation balanced, adrenals and immune system improved, my gut is way way better. To the extent for the first time in over 5 years I can eat a meal with gluten, dairy, soy, fibre, foods i havent eaten for 5 years, and had very minimal reaction. I can now eat out and not have major reactions.

Hang in there, give your body and mind time to adjust, be prepared for hiccups especially in social situations in the early days.
it will get easier, for the majority with good healing the reactions get less intense. You will find safe places to eat and socialise, it just takes a bit of time, for both you, and your family and friends to adjust and accept your MC management plan.
my experience thus far, when you are relaxed at peace with what is MC wise, others around you will be more at peace... they will see that the restricted diet does work, you are getting better, you are ok with it mentally and emotionally....

megamoxie · Post by **megamoxie** » Mon Oct 13, 2014 6:35 pm

Thanks, Linda, I could definitely do that... but how do you cope when you have to sit down for a meal out somewhere with others?

Gabes-Apg · Post by **Gabes-Apg** » Mon Oct 13, 2014 6:47 pm

how do you cope when you have to sit down for a meal out somewhere with others?

- eat before I go out
- take a safe snack with me
- take a protein shake with me

In the past 5 years I have learnt the following about eating out socialising;
- eating out works ok in good quality places in small numbers (no more than 6 at the table)
- works really well if the cafe advertises gluten free/ able to cater for dietary requirements (or the chef or wait staff have allergies/intolerances)
- large groups more than 8, I have never had any luck getting 'Gabe safe' meal
- days when the restaurant has been busy all day, ie mothers day hard to get compliance to the chef card
- Formal functions like Weddings/christmas parties where the kitchen is trying to get 50-100 meals out the kitchen in short period of time has never worked for me... Even when special meal has been ordered.
One event, i met with the event organiser at the restaurant the week before the event she guaranteed me a gabe safe meal, on the night when the kitchen got busy/stressed the chef decided it was all to hard and didnt make my meal.