Restaurant Card and Recurrent Flares and Pain

[kariswalstad]

Good morning, all. I just received my bathroom card and what a great idea! I was wondering if there is such a thing as a restaurant card. My counselor wants me to go out to eat with a friend and bring my own meal, as a way of making sure I don't stop living life. Most of my socializing before was centered around food, and I'm still seeing my closest friends regularly, but because of the extreme fatigue and dietary restrictions, I have limited my activities with other acquaintances significantly. Anyway, is there a card that I'd give the waiter explaining why I need to bring my own safe food, especially in Stage One eating, instead of trusting their menu?

Secondly, I've read many stories here that say healing is one step forward, one (or more) steps back, and I'm in a long step back. I am 100% strict with my GF, DF, SF, oat free, artificial sweetener free diet, but I have not yet eliminated eggs in baked goods. My question is what do I do now? I have eliminated as much stress as possible (but there is no question that it is a huge contributor to the fatigue and pain) and I'm trying to be patient that I'll make more forward progress again, but is there anything else I can do? I still only have 1-2 BMs a day and not always D, but the pain continues and moves around to new places, and often takes my breath away. I'm so tired! It's hitting me hard this morning and I'm feeling sad and defeated. Thank you for listening and my love goes out to all of you fellow sufferers/warriors. xoxo

[kariswalstad]

One more thing: I've been eating lots of GF bacon and I wanted to confirm that it's a good thing. It's from Costco, Pure Farms applewood smoked bacon, cured with water, salt, sugar, sodium phosphates, flavorings, sodium erythorbate, sodium strite and no added hormones or antibiotics. It seems to be a good source of fat and I make sure to drink lots of water so I don't overload on sodium, and my recent blood tests show I'm even a little low on sodium, a shocker since all I do is salt my food with sea salt! :) I don't seem to get any pain or D from it, so would you agree it's safe? Thanks!

[tex]

Hi Karis,

The patience and perseverance needed to deal with this condition can be all we can muster, sometimes, especially early on. You probably just need more healing time. Without budesonide to mask the symptoms, a certain amount of healing must occur so that digestion is more complete before the symptoms will begin to fade. We're all different in the amount of damage that needs to heal, so it's impossible to predict recovery time accurately, but for many of us, remission of most symptoms at least begins within about 3–6 months after starting the diet. For some of us the time is shorter, and for some it's longer, but you appear to be on track.

Here's a link to a "To The Chef" card that you can customize and print. You can carry copies for chefs when you eat out:

An Example Of A "To The Chef" Card

But eating out is risky. The safest (or rather, least risky) restaurants are upscale restaurants (because the chefs are much more knowledgeable). Consider the information in my post at the link below:

Here's Why We Recommend Against Eating Out When Recovering

And please note Kari's post in that thread (the third response in the thread), and especially her update (the 14th response in that thread).

Regarding the bacon:

As long as you are not sensitive to pork, you should be able to eat bacon. However, while we are initially recovering, some of the curing and preserving ingredients may antagonize our digestive system (at least for some of us). Therefore, we can reach remission faster by avoiding those ingredients/chemicals. Some members do much better with uncured bacon (especially during recovery). There is always a red flag raised when we see ingredients listed as generic "flavorings". Who knows exactly what those "flavorings" are?

That said, you may well be OK with that bacon. Just keep this information in mind if complete remission seems to remain out of reach.

I hope this helps,

Tex

[brandy]

Hi Karis,

Short reply due to limited time:

1. If you go out I find ordering an un cut jacketed baked potato is many times the safest. Non chain restaurants also seem safer to me. I've had no problems eating at locally owned restaurants in Manhattan and locally owned restaurants in California. In fact many times at restaurants in Manhattan and in California almost the whole menu is naturally gluten free. Another option is to
eat before you go and have decaf or coffee with your friends. That never bothers me but it bothers my friends LOL.

That said, I've been to Outback many times. I also get french fries at Five Guys (dedicated fryer).

Avoid any place that makes pizza on site. My nieces graduation was at a yuppie salad/burger/pizza place. I had a 4 hour
drive home on the Florida Turnpike (think no bathrooms.) Within 90 minutes of leaving the restaurant I was reacting.
I'll never eat at any place serving pizza again.

If I had my druthers I'd never eat at a restaurant again. Eating out really ramps up the stress (and I've been at this 10 years). Your counselor is coming from a good place but do what you need to do to prioritize healing.

2. If you are struggling I'd eliminate the GF baked goods until you get solid stool for 6-8 weeks. Stick with rice, potato
or sweet potato.

3. A lot of people on the forum do okay with the GF uncured bacon. I've trained my boyfriend to buy the one with the
least number of ingredients.

[brandy]

Karis,

I thought I'd clarify...the gluten free baked goods can be problematic for us early on due to the large number of ingredients
kind of like all of the ingredients in some of the bacons. Early on we do better with foods from mother nature that have one ingredient like rice, potato and sweet potatoes.

[kariswalstad]

Tex, I loved that link; I am so comforted by everyone sharing the same feelings that I'm having. Thank you for your reassurances that I am on the right track. I believe it too, but some times are easier than others, and your validation is so appreciated.

Brandy, thank you for your input and encouragement as well. I think I have gotten to another level of acceptance and will surrender even my limited ingredient baked goods for now. My husband will finish my "safe" muffins - I'm fortunate that he is 100% on board with these huge changes.

I feel so much better! Thank you!

[kariswalstad]

Good morning. It's been a week since I stopped eggs and my watery D has increased! I had one day with formation but that's it. I also quit the bacon that day and since pork and chicken are my "safe meats" according to EnteroLab, I've only been eating them. I eat white potato (no reaction on test), white sweet potato, carrots, some squash and beets, one banana, coffee and tea, and the occasional organic hard candy. My hysterectomy is set for January 14 and I am confident that will help. I did more research and I know I've been increasingly allergic to my hormones for years. I also had hives 4-5 years ago, so I also understand that I've been sick for many years and healing is probably going to take way longer than I want. I can look back and see the various ways my immune system has gotten angrier and angrier. :( Questions:

1. When is too soon to add Cholestyramine? Could I try it yet?
2. Do people ever react to coconut and coconut oil? I use it almost daily.
3. I have not slept well in months and have tried various things. Clonidine is my latest try and it does help with sleep, but I'm wondering if that's contributing to the WD.
4. Does Stage One allow for any almond milk or anything? Is it too soon?

I spend hours scouring this forum and just have such brain fog that I can't make a decision so I give up and ask, so I appreciate your patience when re-answering things. I promise that I understand that I need to accept that I'm still very early in the healing journey. It just keeps bugging me that I had formed stool for like 6 weeks and now I've gotten worse! I have had a few days where I have a little energy, but it never lasts more than a few hours and then I'm back in bed. I am so grateful that I have support and don't have to work during this recovery, and I have joy at some point every day, but MAN, I have despair every day too. So glad to have found you folks.

[tex]

Hi Karis,

This is strictly my opinion (one of my theories), but our experiences suggest that this is simply a real-life demonstration of a quirk of the immune system that causes it to focus its attention primarily on the most serious threats with which it is confronted at any given time. This explanation is taken from Microscopic Colitis, but rather than quoted, some if the information is edited for brevity.

Gluten is usually the most serious issue, by far. When gluten is withdrawn from the diet, antibody production does not cease immediately. In fact, the immune system will continue to produce antibodies for a very long period of time, at a slowly decaying rate, as it continues to remain at a high alert level, remaining vigilant just in case gluten should reappear in the diet.

Anti-gliadin antibodies have a relatively long half-life (120 days), so it typically takes them months to decay, and to be eliminated from the system. Eventually, a point will be reached where the anti-gliadin antibody level has decayed to below the threshold where a reaction is triggered, and after that point is reached, the clinical symptoms will begin to fade away and remission may occur. At some point, the immune system will cease to focus its attention entirely on anti-gliadin antibodies and it will begin to be responsive to other threats.

The immune system will then turn its attention to other antibodies causing issues. At that point, the inflammation process may flare out of control again, due to a reaction against some other antigen. This very frustrating turn of events inspires many people to make the mistaken decision that they must not be sensitive to gluten after all, since they are back in a full flare of symptoms. But this is a serious misconception, inspired by this quirk of the immune system.

You can try cholestyramine at any time. It usually works best after the diet has been in effect for several months, to allow time for some degree of healing.

Yes, a few of us do seem to react adversely to coconut derivatives.

For some of us, melatonin helps with sleep. Others find that taking a magnesium tablet before bedtime helps with sleep.

Without taking time to look, I'm not sure whether Stage One allows almond milk or not, but if you're not sensitive to almonds or gums (soy), it might (should) be an option.

I hope this helps.

Tex

[kariswalstad]

It helps, Tex, thank you. I think I'll try to hold off on adding any meds for now.