I Finally Get It

Post by **tex** » Fri Feb 24, 2012 8:53 pm

Well, we can't cut out every possible food that causes someone else to react, because, as you say - we wouldn't have anything left to eat. Personally, I've never had a problem with potatoes, so I eat them almost every day. I'm not a big rice eater, but I've never had any problems with it, either.

Tex

DebE13 · Post by **DebE13** » Sat Feb 25, 2012 7:33 am

Thanks Tex, I think I'll continue as I'm doing since I have seen some improvement. It's just such a struggle trying to figure things out and being put on the sidelines for many day to day activities. But you all know how that feels so I'll leave it at that.

MBombardier · Post by **MBombardier** » Sat Feb 25, 2012 3:11 pm

Thanks, Gabes!

First grandchild, ya know!

JFR · Post by **JFR** » Fri May 25, 2012 4:51 am

Hi Marliss,

Although it was a Paleo book 10 years ago that got me started on dietary changes (Neanderthin by Ray Audette), I haven't had a good understanding of it beyond a general it's better to eat unprocessed foods and avoid grains and sugar. Now that my symptoms have got so much worse I have decided that I need to understand things better. I have just ordered Cordain's book. It sounds like it will finally help me put the pieces together which will make it so much more likely that I will be able to scrupulously stick to severe restrictions. I have come to believe that even thinking of these dietary changes as restrictions is problematic. I try to think of them as a gift I give myself in the furtherance of good health. I look forward to reading the book. Your initial post in this thread about understanding the relationship between genes, autoimmune disease, leaky gut and diet reflects the kind of understanding I want to have, not just on a superficial level. but deep down inside so that the thought of eating foods that may potentially harm me seems akin to ingesting arsenic. I feel like I am getting there already.

Jean

MBombardier · Post by **MBombardier** » Fri May 25, 2012 1:02 pm

Good for you, Jean!!

Leah · Post by **Leah** » Fri May 25, 2012 5:31 pm

DOES EVERYONE WHO HAS MC HAVE LEAKY GUT? I don't have any histamine type reactions. Is that an indicator? If something doesn't seem to bother my gut, can it still be damaging it.... ie: rice? It would be very hard to cut out my rice and corn products considering that I can't have fruits or leafy greens. I just added red potatoes back in and it seems fine. I just don't get it sometimes :(

Stanz · Post by **Stanz** » Fri May 25, 2012 6:34 pm

Leah,

There are lots of definitions about what leaky gut is and I'd bet that if you asked us all here to give our definition of it in 20 words, we would all say different things. IMO, it's a catch-phrase for unexplained symptoms - much like fibromyalgia and chronic fatigue syndrome. There's no marker for it, it's just a condition that we or our doctors decide fits our symptoms. I go back to '98 with a leaky gut dx. Had my hair tested and was sky high for lead, had chelation therapy for that, felt better for awhile and then slowly life happened, stress happened, infections happened, and then D for 3+ years and my dx/w/MC.

All I know is that we are what we eat and what we can digest and some people never have a problem no matter what they eat and then there's us who end up with MC. I'm right there with you on rice and corn, I'm afraid now that I should avoid them as well and this leaves me with pretty much a meat and egg diet. I don't get it either, but I'll take my dietary problems and the adjustments I've had to make, over my older sisters walking with canes and accepting a dx of arthritis, and having their thyroid glands removed and joint surgeries and back fusions, etc. anyday.

JFR · Post by **JFR** » Fri May 25, 2012 8:32 pm

Stanz wrote:

There are lots of definitions about what leaky gut is and I'd bet that if you asked us all here to give our definition of it in 20 words, we would all say different things. IMO, it's a catch-phrase for unexplained symptoms - much like fibromyalgia and chronic fatigue syndrome. There's no marker for it, it's just a condition that we or our doctors decide fits our symptoms.

I think this may have been true at one time but it seems to have reached mainstream medicine and there is research to back up it validity as a concept. The more scientific types seem to like the term "increased permeability" rather than "leaky gut". Here is Dr Leweys take on it.

http://thefooddoc.com/leaky_gut

I go back and forth between simply wanting to figure out what I can eat and what I can't eat to wanting to understand the underlying processes that have caused my current issues. I see enough good results from dietary interventions to stick to them regardless of whether or not I ever truly understand the processes. Nonetheless I have always been the type of person who needs to understand things so I would like to put it all together.

Jean

Stanz · Post by **Stanz** » Fri May 25, 2012 9:26 pm

Thanks for posting that, Jean, I have read that article many times and cited it in emails to my sisters, but reality is that Dr. Lewey is still considered just as "out there" as Dr. Kenneth Fine at Enterolab is by pretty much any of the Medical resources like Mayo Clinic, et al.

Reality is that they know that Dr's Lewey and Fine are right, but virtually 100% of all research is funded by drug companies and therein lies the problem.

Don't see anybody here from Finland do we? All the best research and practices come out of Finland. They are the only nation I've seen who have actually done the research and published the research and require genetic testing of their children for this. I don't know the politics involved here, but from what I've seen, it's always all about $, and apparently somehow somebody somewhere in Finland actually got something done.

MBombardier · Post by **MBombardier** » Sat May 26, 2012 10:50 am

No matter what the issue, it seems, it's follow the money...

For me, in my elementary understanding of intestinal permeability, it means that if I wake up with joint swelling and pain I ate something I shouldn't have. The leaky gut is always there and it's sort of a bellwether for me now, like heartburn is.

My first question is (I need to read Dr. Lewey's article to see if he answers this) does the increased permeability ever go away?

My second question is how many of us, like me, have learned to spell arcane medical and food-related words because of this illness?

That's interesting about Finland. I did not know that. I will pay special attention to research coming from Finland.

Just to play devil's advocate... there have been five visitors from Finland to the board in the last four months.

Post by **tex** » Sat May 26, 2012 12:05 pm

Marliss wrote:My first question is (I need to read Dr. Lewey's article to see if he answers this) does the increased permeability ever go away?

I don't recall if Dr. Lewey addresses healing or not, but yes, compromised intestinal permeability can indeed be healed, but it takes a long time, and the longer it remains untreated, the more easily it is triggered.

Marliss wrote:My second question is how many of us, like me, have learned to spell arcane medical and food-related words because of this illness?

As Jeff Foxworthy might say, "If you can spell arcane digestive system medical terms better than most gastroenterologists,

You might have MC."

Tex

tnelson · Post by **tnelson** » Sat May 26, 2012 4:37 pm

I have given up pretty much everything on the "bad" list, except potatoes. Giving up potatoes, though, would leave a big hole on the plate. I do eat sweet potatoes, but the regular old potato is a visitor at nearly every meal and a source of quick calories and filling up since fruits and vegetables are so problematic right now and have to be added so carefully (over a matter of months, probably). Rice is OUT for me--terrible reaction.

Of course, I would give up potatoes in a heartbeat if it would heal this problem. Maybe I just need to take the leap of faith and eliminate them. I know they don't cause a reaction in and of themselves, but perhaps they are keeping the whole system stirred up? I would love words of wisdom on this question.

Thanks everyone!
--T

tnelson · Post by **tnelson** » Sat May 26, 2012 5:33 pm

Oh, I see there was a second page where the potatoes question came up. Oops.

tnelson · Post by **tnelson** » Mon May 28, 2012 8:25 pm

More research on potatoes: I have learned that the glycoalkaloids are much more concentrated in the peels:

http://ucce.ucdavis.edu/files/datastore/234-182.pdf

I plan to peel all potatoes in the future. I was eating the peels for extra nutrition.

Fun to hear about Finland. We will be going there in two weeks. I speak Finnish, rusty now, and my daughter was born there.

--T

Leah · Post by **Leah** » Mon May 28, 2012 11:55 pm

T, I haven't figured out potatoes yet. Red ones seem better. I don't think they are inflammatory long term, but can cause gut distress within a couple of hours. i haven't tried plain russets for a while. I will test them soon, but i am just coming out of a mini flare and need to get over that first. Thanks for the idea of peeling them though.

Leah