Would love some support

[Beth]

Hi all,

I'm back from my vacation in San Francisco - it was absolutely amazing! But the flare is back in full. I ate a couple of things on the questionable list - like a tiny bit of soy-based mayo and some macaroons made with almond flour. Now I'm back to D, some of it of the fire-hose variety. I was having major bloating, too, but it seems like if I just eat animal protein and peeled potatoes I'm far less bloated and crampy than if I eat zucchini and kobocha. I think I'm just used to bouncing back from these flares, but more and more it seems like I start to get Norman for a few weeks and then the tiniest bite of something questionable sends me back into another weeks- or months-long round of D. I guess my gut is really, really inflamed! I know it's not very helpful, but I often feel guilty for sending my body into another flare. Of course I never mean to, but when you can only eat 2 things, it can be hard to remain 100% perfect on your diet — especially if you don't even know what being 100% means — what to eat, what not to eat, know what I mean?

Also, I'm really concerned about getting proper nutrition. My husband and I are trying to conceive, and I can't eat any vegetables or fruit right now. How long can the body go with just meat and potatoes without getting depleted? Especially a (hopefully soon) pregnant one? Tex, I know you did that for about a year and a half, but you also weren't trying to get pregnant. I am starting to take a prenatal multivitamin again (Freeda), but who knows if I'm absorbing it. Also, sometimes just because I crave something sweet, I'm eating a little bit of applesauce or sipping a tiny bit of apple juice. Is that a huge no-no? Or just trial and error whether it's okay? Oh, and I'm drinking a lot of rooibos tea. That I simply refuse to give up right now, especially since the MRT results say I can't have lemon, which means not much alternative for tea. I need the warmth and the taste.

Finally, I'm thinking about the MRT results - I don't think I can even deal with a rotation diet right now if I can only eat meat and potatoes. I can definitely stay away from turkey, but otherwise there simply isn't enough variety to rotate.

Anyone have any thoughts/support/suggestion? I could really use it!

Thanks so much,
Elizabeth

[Lesley]

"if I just eat animal protein and peeled potatoes I'm far less bloated and crampy than if I eat zucchini and kobocha".
I have also come to that conclusion. Every time I eat something else I have either D or C and terrible GERD with nausea.
Animal protein for me is mostly beef and lamb. I am not very keen on Turkey, but will eat it if I have to.
I also understand the concern about nutrients. I am not young and trying to conceive, but I am older, and need the nutrients so I don't lose strength I won't be able to get back.

I think I am much "newer" at this than you Elizabeth, and it may not be much help or the support you want, but I do feel your pain. I really do.

[tex]

Hi Elizabeth,

Sorry to read that you're having a relapse of symptoms. I hope it doesn't last long.

Actually, you can live indefinitely on meat and potatoes. Meat contains all the essential amino acids, so it's a complete food. If you eat only meat, though, you have to be careful that it includes enough fat to allow you to avoid what's known as rabbit starvation.

I'm pretty sure that there were certain times of the year when many of the paleo people ate nothing but meat for months at a time, because there was nothing else available.

A little applesauce should be OK, as long as you don't overdo it and get too much fiber.

Tex

[Gloria]

Hi Beth,

I'm really sorry that you're having a difficult time adapting to the three-day rotation diet.

My husband and I are trying to conceive, and I can't eat any vegetables or fruit right now.

I've looked at your list of reactive foods from the MRT test and only see asparagus and lettuce listed as reactive vegetables, along with tomatoes (which are actually a fruit, as you probably know). Reactive fruits listed are lemon, orange and pear. Are you having reactions to other fruits and vegetables? Or are you avoiding them because it affects your ability to conceive? I'm a little confused, please forgive me for not understanding.

After receiving my MRT reactive food list, I had a limited amount of foods left to eat, especially after eliminating foods high in fructose and histamines. I listed the foods I could eat, breaking them into similar food groups. I could eat three meats, three vegetables, and, at that time, a few different seed/grain flours. Once I listed them in groups, I created a rotation diet as best I could without repeating the foods. I still use the same rotation diet today, but I've had to eliminate all grain flours except corn. I am no longer able to rotate the flours, but I still rotate the meat and the vegetables. I eat the same meals every three days with very little variation. It is a very plain diet, lacking in nutrition because I can't eat any fruit (other than avocados) or most vegetables. I take supplements from Freeda vitamins to provide the missing vitamins.

Other than having osteoporosis, my health is pretty good. The only prescription medication I take presently is Entocort. My blood test results show that I'm borderline in potassium, but everything else is OK. I wouldn't recommend my diet to anyone, but we do what we must to control our MC.

It sounds like you are having some successful days and some bad days, which is very normal while you're figuring out what you can eat. Hopefully you're maintaining a "Winning the Poo" food and BM/elimination diary. The diary has been a great tool for me in helping determine my intolerances.

Gloria

[Kari]

Hi Beth,

I'm glad you had a good time in San Francisco - sounds like you had a nice break. As for your MC roller-coaster ride - I've been there, so I totally understand and sympathize.

A few suggestions from what has helped me:

1) Whenever I've gotten myself in real trouble, home made chicken soup has been my "recovery food" - I include a veggie or two in the soup for extra nutrition.

2) To get fruit into my diet, I boil apples or pears with cinnamon in a small amount of water for about half an hour. This makes them much easier to digest, and the flavor from the cinnamon is wonderful.

3) To get veggies into my diet, I over cook them and then flavor them with EVOO and celtic salt.

4) Nut butters are very nutritious and great for snacking - of course, with the nuts that you are not reactive to.

5) Boiled potatoes mashed in EVOO and flavored with celtic salt give bulk and fullness.

Those few simple ideas have helped me tremendously on my road to recovery. I'm also one of the few here who tolerates beans and actually feel very well on them, so I frequently make bean "sauce" (pinto, black, red, or refried beans) and have it with potatoes or gooey rice.

Many people here find that soft, gooey rice is very soothing - I can't remember if you can have rice?

If you can figure out a very simple eating "fall-back" plan that works for you, you'll get a great sense of security, which goes a long way towards healing and recovery.

I can't remember the details of your history with MC, so my suggestions may be way off, but thought I'd share what has been working for me. Hope you get back to stability without too much trouble. Lots of luck to you - sending you healing thoughts.

Love,
Kari

[Gabes-Apg]

Elizabeth
woo hoo that you had a great trip, sorry that you have fire hose D.

We all have our 'ideal' eating plan but when there are symptoms, like Kari, any time there are symptoms i revert back to safe low inflammation easy to digest meals. Mine is gooey rice (rice cooked in home made chicken stock) with either poached chicken in small pieces or egg stirred through.

If you are having fire hose D, then you are not absorbing any nutrients. The priority is to get the digestion working better, THEN worry about nutrition.

I have been having pureed apple with cinnamon and calcium carbonate, it is mostly for the GERD, but the apple and the cinnamon are good for inflammation.
it is quite individual as to what foods we can tolerate and cant tolerate when there is chronic inflammation

hope things improve soon
take care

[sarkin]

Elizabeth,

Sorry to hear about your flare, and I hope it's soon behind you.

I agree with other's suggestions (first calm things down, then worry about nutrition; inflammation is the worst adversary to recovery, and perhaps to conceiving), and hope you find your own magic bullet - I know it's been hard. I believe that calming the inflammation down will be the best possible thing for a healthy pregnancy. Other than B-vitamins, which are important in early pregnancy, most of the nutritional demand on your growing baby will come in the second trimester. So this is the right time to focus on your recover, so you can focus on healthy eating for two down the road.

One thing that crossed my mind, from a thread some months back - it's possible that air travel itself might exacerbate mast-cell issues, if you have those. If that's the case, an OTC anti-histamine may help. Some of us take a Zyrtec or Claritin on occasion (or even a Benadryl) - sometimes 1/2 a dose. I always hesitate to suggest adding anything to the mix when you're flaring, but it is something to consider.

I also do really well with plain meat and potatoes (and at this point in my healing, plain meat and some other vegetable can also work). I am now taking quercetin, which is reputed to prevent mast cells from degranulating. I think it's not without risk to throw that into the mix, though, and figuring out which brand/formula would work for you might be more trouble than it's worth.

How are you feeling otherwise? Do you have other, non-digestive symptoms as well? I can't remember whether we've ever asked you about the possibility that mast cells are involved in your MC... but I remember Mary Beth mentioning this connection with air travel.

I hope this helps,

Sara

[Beth]

Thank you so much, everyone, for your responses. I think I need to read more about the whole mast cell thing - I'm very new to it and so don't know much about it. I'll definitely check it out. It's interesting what you say about air travel, though, Sara. Almost as soon as the plane took off on our way to San Fran I started feeling a huge amount of cramping and gas. It was better on the trip home, though I was still definitely uncomfortable. I took some sodium bicarbonate a couple of times during the flight and that seemed to help a bit.

I'm feeling really good otherwise - my energy is a little lower than usual but much higher than it was for years, so I'm happy with where I'm at. I just can't seem to handle any food right now other than meat and potatoes.

I'll write more later b/c I have to run out right now - but I just wanted to say thank you!
Elizabeth

[Beth]

Hi Gloria - I wanted to answer your question from yesterday about fruits and veggies and pregnancy. Basically, I can't eat anything with fiber right now because I'm bloating so terribly. If I could eat them, it would be great and would certainly be good for trying to conceive. I'm just quite limited in what will cause pain/discomfort.

Sara - what brand of quercitin are you using? How long have you been taking it? Have you seen any obvious benefits? BTW, I ordered some of Carlson's fish oil, and I'm reacting badly to it. I have a brand new bottle with 1 tablespoon missing. I've been meaning to ask if you you want my bottle - ???

Thanks!
Elizabeth

[sarkin]

Elizabeth,

You might take a week or two off from fish oil, and then reintroduce it extremely slowly (1/8th to 1/4 teaspoon at first). The Carlson brand is reputed to be a pretty good one. And once you get this flare under control and get back on the healing track, you may find it helps. I'm sorry it made things worse (and totally understand if you just can't bring yourself to risk it again).

I am using NOW brand Quercetin. I think it helps me - I haven't had the kind of mast-cell symptoms that seemed to come and go since I began taking it. (But I was by no means as overwhelmed with symptoms when I started taking it as you seem to be at the moment - I don't know whether it would stop that kind of reactivity in its tracks, or - perish the thought - make it worse.) I take far less than the recommended amount; usually one a day, sometimes a second with my evening meal. The bottle suggests 2 capsules, 2-3x/day. I no longer use the Claritin or Zyrtec on a regular basis.

I can't be sure the Quercetin is entirely responsible. It's possible that I finally had healed enough right around that time, or that my dietary choices settled down better, or - you know, luck. I wish I knew for sure (about a lot of things!).

I know your diet is already frustratingly limited - but you might pick one of those ingredients and skip it for a few days, to see if it makes a difference. I didn't know that I reacted to eggs, and never had the kind of D you're describing from eating them. But after my Enterolab results, I dropped them, and it has made a difference. I picked on eggs not only because I happen to react to them, but also because you have other good protein sources on your list. I know you're already rotating them, but hope you can rule out the possibility that one of your safe foods isn't truly safe.

I hope you feel better very soon,

Sara

[Beth]

Thanks, Sara! I keep losing my responses to these posts . . . I'll try again.

Anyway, I haven't been taking the fish oil for some time now. Maybe when this flare is firmly under control I'll see if I can add it back in. But even the smallest amounts were making me cramp up and all gassy.

I'll also check out the Quercitin. If it helps, I may be on to something!

Also, I just want to say that I'm not rotating my foods at all. There aren't nearly enough foods to rotate. But I'll try taking out eggs and see what happens. They've never been a problem before, but who knows . . . things change!

Thanks again for the support,
Elizabeth

[Lesley]

Sara - I can't take fish oil. It's always made me sick. I have substituted flaxoil and other stuff, and eaten LOTS of fish, but right now I can't.
Any ideas?

[sarkin]

My best idea is to wait. When you're feeling good and stable, you could try a "super-clean" brand at an extremely low dose (of either fish or flax oil). I don't think it's worth the risk, if it has made you sick in the past. There are pharmaceutical-grade fish-oil Rx-level products, but I like the control-freak aspect of avoiding the gel-cap, and being able to titer up my dose carefully.

Elizabeth, I wish I could give you a handful of these quercetin capsules, so you could start with teensy bits and work up. (Are you in Boston proper? that's my other hometown - grew up in Wayland and stayed in the area through college & beyond.)

--S

[Lesley]

May that day come soon.

All capsules have caused me some heartburn in the past. I need to ask the pharmacist to exchange my capsules for tablets.

[Deb]

Elizabeth, may I suggest you keep your fish oil in the refrigerator if you're just using a small amount. I've noticed my Carlson brand gets a bit fishy if DH and I haven't used it up within a couple of months. Deb