Need Input that I'm not going to get from Dr.

Gabes-Apg · Post by **Gabes-Apg** » Tue May 19, 2015 2:02 pm

Patricia,

If you think MC is overwhelming enough. You should see how PCp's react when you have multiple issues in chronic flare!! (Kidney, skin, mast cells, Fibro, chronic fatigue)

Meditation / acceptance of the diagnosis, lifestyle changes etc is just as important as diet and meds...
Being prepared for a long healing journey, with regular hiccups and issues...

Erica, I agree with what has been mentioned, I would go back to small amount of ingredients. Be cautious of gf products with blend of flours etc. be conscious of histamines/mast cells
Do the mental and emotional work of living life with MC... It is alienating... The changes are for life.... We have to be at peace with that. We also have to be at peace that the health system has limited scope to help and support us, so WE have to assess and make decisions for our wellbeing...

Hugs to both of you.... I can assure you that all the hard work is worth it.....
(I am only at fist stage of 3-5 year healing journey)

Erica P-G · Post by **Erica P-G** » Tue May 19, 2015 2:02 pm

Patricia, I think Tex would be great to pick his brain on this one. I hope he can chime in on this topic for you.
Hugs
Erica

Erica P-G · Post by **Erica P-G** » Tue May 19, 2015 2:08 pm

Hi Gabes,
Yes the mind game has begun, and apparently I am fighting it. My family will just need to be patient with me while I work this out, and it is gonna take some time.

I figure I will need to pare back what I have been eating to a mear 3-4 items to start with....I am curious how long I would eat those things before noticing a difference? What has been a normal range for most people a few hours a few days?

Hugs back....
I really appreciate the feedback,
Erica

Gabes-Apg · Post by **Gabes-Apg** » Tue May 19, 2015 3:04 pm

Erica,
Sadly the answer is - it depends...

Depends on what is causing the inflammation...
Healing will only happen once the major trigger/triggers are removed....

Histamine/mast cell could be making the reaction to an ingredient /ingredients worse.

A bit like the other post about a flare, we may be able to have small amounts of certain ingredients but once you have too much, the D returns...

I frequently say, if you break a bone or do major injury to muscle/tendon it takes at least 8 weeks to heal, and then it is a take it gentle approach for another 4-8 weeks. So for our gut, 12-16 weeks would a reasonable minimum
It can take longer if you have any deficiencies of key nutrients/minerals.

Once things are stable, don't rush to add things in, stick to the bland gut healing low inflammation eating plan as long as you can handle it...
Home made bone broth is my suggestion for awesome gut healing properties... It is cheap, you make it based on your safe meats, cook your veges in it, make soup/stew of your safe ingredients. I have been eating my safe proteins and the same 5-6 vegetables for 5.5 years. There are some additional vegetables that I can have 1-2 times a week in small serves.
If there is any stress (mental and/or physical and/or emotional or all three) I revert back to my bland, couple of ingredient meals for a few days.

Hope this helps...

brandy · Post by **brandy** » Tue May 19, 2015 3:11 pm

Erica, I think most hesitate to post healing time tables because they can vary so widely. I was in the slow healer category. A lot of folks healed much much quicker than me. I saw results in 8 weeks of eating just chicken, white rice, and green beans. That is all I ate for 8 weeks. I also did extreme meditation every day during this period. Eight weeks of the few roods regimen got me to "soft serve" once a day. I was not on meds at this point. It was a full two years before I healed. Year 2 I was pretty good but the fatigue in year 2 was still mindnumbing. Again a lot of folks healed much quicker during that 2 year period as seen by their thanks to Tex on line.

Patricia, I had a lot of the joint pains and arm tingling that you talk about. I also had a lot of brain issues. The docs didn't know what to do with me...PCP, gastro, and gyn phys assist. I agree with Rosie, I think my symptoms were due to malabsorption that got better with time and healing.

Erica--I can't tolerate corn or corn chips either. A lot of folks on here seem to do ok with Simply Lays pototo chips. They are generally in the health section of the grocery store if you can find them on the west coast. I think they are just sunflower oil and potatoes and salt. They Wavy's chips are cooked in the cheapest oil on the spot market at time of production. IF you are struggling best to eliminate chips for awhile and stick with cooked soft potatos or rice.

Patricia----this is really good and deserves emphasis:

For the first three weeks I only ate lamb, sweet potatoes, olive oil, salt, pepper, and 1-2 bananas a day. I guess I was quite lucky because pretty soon my BM changed from a 7 on the Bristol stool scale to mostly 5's. After three weeks I tried out regular potatoes, then cod and other wild seafood, taking it super slowly. I was a bit discouraged when my BM became mostly 6's for no apparent reason without any further diet changes. I decided to leave away the sweet potatoes and my BM changed to 4 and 5's. In March I did a sweet potato trial and promptly had nausea and diarrhea the entire next day. I was disappointed because I really like sweet potatoes, so for now, I am leaving them away. I might give them another try a few months from now. Each time I try a food and it does not go over well, it takes me quite a while to recover (physically and mentally, sometimes it takes me two weeks before I am ready to try something, knowing fully well that it might feel like food poisoning a day later). Right now (5 months after starting this trial) I am eating lamb/chicken/beef/cod/tuna with potatoes/rice, avocado, olives, olive oil, salt, pepper, bananas and rice cakes. The newest item I tried was plantains thanks to a suggestion on this board. So far, so good. I really like the homemade plantain tortillas (plantains, olive oil, water, salt). I tried to add well-cooked veggies a while ago, like broccoli and cauliflower, also nut butters like cashew butter so I could add some calories. However, the bloating was so awful and painful that I cut out the veggies and the cashew butter. I will give my intestines some more time to heal before trying again. I also tried potato chips and tortilla chips. They did not make me feel good at all. I don't know if it was the grease or the corn with the tortilla chips. Same thing, I will wait some more time before giving it another try.
The fewer ingredients you have, the easier it is to tell what is an offending food for you. Back in October, when I first started the diary, I noticed that I quickly had 150 ingredients in my excel spreadsheet (a lot of gluten free foods have 10 or 15 ingredients listed on the box). So instead of baking an imitation of what I would eat prior to my diagnosis, I went back to the very basics.

Erica and anyone else needing encouragement....check out the success stories section of the forum.

Brandy

brandy · Post by **brandy** » Tue May 19, 2015 3:24 pm

For anyone struggling....the few foods regimen is the way to go. If you see no positive changes in 2-3 weeks change up the few foods.

We are bombarded with marketing and advertising that we have to eat multiple food stuffs in order to stay healthy. For thousands of years mankind evolved eating few foods....what was in season and what was available in the geographical location. Prior to the 1950's folks ate more seasonally and had less food choices.

The Irish population during the several hundreds years prior to the famine had tremendous population growth during a time of the Irish people eating primarily the potato with rarely some meat and also some greens.

Brandy

Erica P-G · Post by **Erica P-G** » Tue May 19, 2015 3:25 pm

Thanks Gabes,
That's about as honest of an answer I can expect right now. I was afraid this bland menu was going to be a lot longer than I was willing to admit to. It also sounds like it will potentially be my life pattern for a while so I best get used to it and find other things to be grateful for

I have put myself on a good vitamin that I have looked at very closely and emailed the company about any of my sensitivities and it appears I should be ok with it. I am also taking a spray vit D, a 50 mg Zinc, a Cal-Mag-Boron combo of 4 capsules 2 morning and 2 night (I have verified it also does not contain any of my sensitivities), and my Allegra 180mg.

I will research the broth/stew idea and see what I can come up with - I can do crockpot

With Memorial weekend coming near I will have an extra day off work I can hopefully put my mind to something. I need to try to quick thinking about food and why I can't eat what I want, and focus some energy on reading or crafting. I need to find a way to move away from the stress of feeling stressed about this food thing. It just gets hard sometimes when my menu is limited but my husband still wants help preparing something for him too. There are times I just want to run away from my kitchen

I sure hope this MS/LC stuff hasn't broken or stressed close to a breaking point any marriages while trying to deal with it. That's the last thing my mind/body needs right now, not after 23 years

Thanks again Gabes, I sure do appreciate your candid answers. Hugs
Erica

brandy · Post by **brandy** » Tue May 19, 2015 3:33 pm

Hi Erica,

You are probably tired of hearing from us. I went thru about a 10 week period when I eliminated all oral supplements. I still took vitamin D. I'm taking some supplements now. The zinc, Cal/Mag/Boron could be problematic. Early on it is tough for us to digest anything other than food stuffs. You might consider eliminate these for 2 weeks and see if you get improvement or look for replacements that don't involve an oral supplement. For zinc you can get a "mouth swish". Magnesium you can get thru epsom salt baths. thoughts for the short term.

PS. WE EAT REALLY GOOD AT MY HOUSE NOW. IT WILL TAKE TIME. DON'T GET DISCOURAGED.

brandy

Erica P-G · Post by **Erica P-G** » Tue May 19, 2015 3:37 pm

Thanks Brandy,
After reading some posts over and over today, it appears I need to cry let all my pent up feelings out and start over with my thoughts on how I should approach this. With the help of everyone's stories I have concluded that things could be worse...right. Instead of feeling stuck, I will start with 3-4 food items see how I feel in a few days, if it doesn't seem to change anything, I'll drop one of them for a few more days, if it doesn't seem to do the trick I'll drop one more. I can't imagine that turkey and rice if that is all I'm able to tolerate can be setting me off at this time. I posted a pretty long food list at the beginning of this post, it appears I am narrowing it waaayyy down now.

What is a good thing to drink since I don't want to let my blood sugar get to low. I'm not diabetic or anything but when I start to get light headed plain water usually doesn't fix it.

I will certainly keep reading the success stories, gotta maintain my sanity some how

Thanks again,
Erica

Erica P-G · Post by **Erica P-G** » Tue May 19, 2015 3:42 pm

Ok Brandy,
How about probiotics would I have an issue with those as well?

I honestly don't tire from hearing from everyone

I will stop the supplements for now to see what's going on. I do have Epsom salts, so will try to remember to do that daily, and will stick with the VitD, last month my vitD was 43 I still want to keep upping it some more.

Thanks!
Erica

Gabes-Apg · Post by **Gabes-Apg** » Tue May 19, 2015 3:51 pm

Meal suggestions.... (Low work input, not much washing up)

Crock pot/stews. Make a big batch based on your safe eating plan, take half -three quarters out for you, then modify to suit husbands tastes etc.

Freeze yours in meal portion size (quick freezing and only defrosting meal portion at a time minimises histamine issues)

Roast meat and veges. Buy roasting piece of safe protein. Fill half the the pan with your safe veges, fill other half with husbands preferred veges.
Left over veges reheated with fresh cooked protein like salmon etc is yummy meal.

Make a jus/gravy from home made bone broth, coconut aminos, small amount of safe flour.

Reheated veges in Britain and Aus is called bubble and squeak. When prince William and Kate got married, bubble and squeak was one of the courses at their wedding celebration, if it is fit for royalty it must be awesome for MC'ers.
Since I went gluten free over 15 years ago (well before my MC Dx) bubble and squeak with eggs has been and still is a frequent breakfast for me....
I roast carrots, sweet potato, parsnips.

Well cooked veges in one pot. (If hubby doesn't want well cooked then set up a steamer, your veges in the bottom cooked longer, his veges in the top not cooked as long)
One small pan for your safe protein
One small pan for hubby's prefferred protein with what ever flavours marinades that he wants...

Or I have been cooking salmon in the oven rather than frying it. No smell. No mess on the stovetop. Small casserole dish lined with baking paper. Bit of salt and DF/SF spread, on yours. Seperate small dish and add whatever flavours for hubby.

I use a rice protein powder as meal replacement. Great for hot days when others are having salads. Great for day trips/eating out. If socialising I take my rice protein with me. Even into restaurants etc.
it is affordable, works out about $3 a serve (cheaper than gluten free/soy free potato chips here in Aus).

There are loads more. Take it a meal at a time, day at a time. As you come up with what works for your household etc it starts to get easier... Becomes routine. Having a supply of safe staple meals in the freezer is a good way to reduce the stress/unsettlement.

If you want suggestions for the mental and emotional side let me know. There are some great audiobooks/podcasts that can help. I play them while I am in the kitchen doing my cook ups etc

Erica P-G · Post by **Erica P-G** » Tue May 19, 2015 4:26 pm

Thank you Gabes,
I'm gonna have to re-read your post a few times in order to get familiar with an easy approach to cooking right now. I don't roast much in my oven, I usually throw things together in a crockpot, but obviously with my bland diet that isn't gonna help with the husbands ability to have more flavor than I at this time. So I may need to Oven cook a bit just to get some essentials in the freezer in a larger quantity for myself (less stress completely). Love the bubble an squeak I have not heard that before.

I wouldn't mind a couple suggestions on mind/body, if you have found something to ease the mind that's great.
Hugs
Erica

Gabes-Apg · Post by **Gabes-Apg** » Tue May 19, 2015 4:45 pm

Anything by pema Chodron (thanks to polly for enlightening me to her magic) Echkart Tolle.
I love their audiobooks, as they are doing the talking. They both have relaxed good humour approach and hearing them reading the books.
I have listened to their audiobooks so many times... Like over a hundred times for each one.
I am sick with the flu at the moment and struggle to sleep so play them. Or when I am doing chores, the cook up. Driving in my car etc.... Even if you only listen for 5-10 mins while you have a cuppa.

The mark nepo books are also a good resource. I personally don't like his audiobooks so stick with paper/e-reader versions... He has a good daily affirmations book. 5 minute read each morning. Book of awakening

Bene brown. Self confessed ex perfectionist!! Gifts of imperfections....

If you have iTunes... Get into the podcast section and search away.... Search the words acceptance, grief, change, peace, Buddhism, meditation. There are bucket loads of options. Listen to the free samples, see if you like their voice, tone, approach. Most of them are free!!
You don't have to be Buddhist or give up your current religion/beliefs to benefit from this avenue of podcast... They really help with being at peace with what is, trusting the flow of life, put our energies into the things we can change, and be in acceptance of those we can't...
Again I play these while doing chores, cooking, driving (not guided meditation ones while driving) and play them multiple times
Each time I play them I hear a different message or theme depending on what is happening in my life at that time (does that make sense?)

Again it takes time.... It has taken me over 3 years of this stuff to get to a good stage of acceptance, peace, etc....

Erica P-G · Post by **Erica P-G** » Tue May 19, 2015 5:10 pm

That sounds like a good beginning Gabes, I will research those. I do have ITunes so that is a good option too.

I am very open minded, and believe things do happen for a reason, it is just finding acceptance, peace like you say that is needed at this time.

I wish you speed healing from the flu, that is the last thing we with MC need to be dealing with

As if we didn't have enough energy to fritter away to begin with!

I appreciate your suggestions

Get well soon
Thank you
Erica :bigbighug:

Leah · Post by **Leah** » Tue May 19, 2015 8:23 pm

Hi Erica. I didn't read all the responses, but I can tell you that Canola Oil is something to stay away from. I can eat potato chips ( now), but I eat Lays "Simply". I think it would be so worth it to you to do the Enterolab test because it sounds like you are reacting to something that most of us are OK with ( like rice or corn). At the beginning, it's best to stick to freshly cooked proteins and veggies as much as you can.

Good luck
Leah