I Finally Get It

[Sheila]

Has anyone had a retest from Entero lab after a year of GF etc? It has been about a year and I'm feeling lousy again after doing pretty well for several months. The number of things I can eat is dwindling away and after reading this thread I'm fearful of losing potatoes and rice and all the grains in my home made bread. They are staples for me, especially the rice and bread. I'm not a big meat eater, beans are a no-no, egg intolerant, no salad, dairy and soy intolerant. Sad.

I'm hoping I can eat eggs again. I remember someone posting that after a year of GF, their gut settled down enough to allow eggs. Anyone else remember that or have a comment?

Re leaky gut: I didn't know what the heck you were all talking about but I probably am as leaky as the rest of you.

I'll investigate the paleo diet and will have to do something drastic to start feeling better. I'm travelling for a few days and just dread what will happen. I've been promised that the food will be GF but we all know how that goes. I have a bag of food with me and hope the TSA guys don't take it away.

Sheila W

[Leah]

Sorry to hear you aren't feeling very well these days Sheila. I know there are people on this board who have gotten re-tested so hopefully they will see this post. Potatoes might be the culprit since "nightshades" can cause D. Most of us are okay with rice, but some aren't. Just don't get rid of both at the same time. The Paleo diet is good for people who can eat some fruits and maybe salad- otherwise you'd only be eating meat, very cooked veggies and.... nuts?

I hope you find the answer soon. ( Are you taking any meds?)

Leah

[Sheila]

I'm taking one entocort a day but have had to up the dosage lately. I can feel myself getting more and more uncomfortable, gassy, gurgling, no D but going ALOT. I start going to the bathroom at about 5 a.m. and that doesn't stop until I take the entocort.

I love risotto with added shrimp, butternut squash or zucchini. Ditto quinoa tabbuleh. Butternut squash soup is a staple and so is spaghetti (rice) with clam sauce. I am eating so conservatively. However, and this is a big however, I am eating homemade brownies every day. They are GF/SF but have a lot of sugar and a lot of chocolate. My one big sin left in life. I LOVE chocolate and probably need to stop it.

Decision made today is to redo my entero lab testing and add a few more tests. I'm also going to do MRT testing. It takes so long to add and subtract food and I'm really tired of feeling lousy.

Perhaps all of this is a delayed reaction to stress. I got through an enormous amount of stress with no reaction. I'm wondering if it has all just caught up with me.

Thank you, Potty People, for always being there with suggestions and an encouraging word.
Sheila W

[tex]

Hi Shelia,

I had the same problem with increasing symptoms back in December, and I suspected cross-contamination, so I did an EnteroLab test. Sure enough, my anti-gliadin antibody level was 62. After some changes in kitchen practices, I'm back to normal, but I'm sure that it will take a while for the antibody levels to decline to normal again. Gluten is everywhere these days.

Back when I was initially in recovery, I had to minimize sugar, because it would cause me to get sick if I ate normal amounts of it. It's possible that I might have had a yeast overgrowth problem, because I had to avoid sugar for a looooooong time.

The tests you've ordered should be very helpful. You're right -- the stress might have contributed to a delayed reaction, or maybe it just created an environment of increased sensitivity, where any cross-contamination, or an unknown food sensitivity becomes much more likely to cause a reaction. Good luck with your trip.

Tex

[Sheila]

There shouldn't be any cross contamination but it is possible I've missed some things. I should probably throw out my old wooden spoons. I moved a lot of my own kitchen utensils out of storage and into the house after DH died and those wooden spoons are always in the pasta pot.

I've given away all the body lotions without ingredients listed after I found out about the wheat germ oil in my favorite cream. But, boy oh boy, something is really getting to me. I just downloaded the Paleo Diet book and will give that a try. I doubt cave men ate brownies. Hopefully they drank wine.

Sheila W

[wonderwoman]

Sheila, I think a retest would be beneficial for you. I redid the EnteroLab test and was shocked at the results. It said I was reacting to everything that was tested.

You can see the results here.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=16238

I can't have any grains, dairy, soy, or nightshades. Most meat is off limits. I am down to bananas, strawberries, cantaloupe, turkey, pork, seafood, only cooked veggies, and almonds. I'm experimenting with tapioca & almond flour. I lost 4 pounds this last week. This is the lowest weight I have ever been.

My MRT test showed cane sugar as a yellow so I am trying to eliminate sugar. I had suspected it might be a trigger for me. I just pulled out a bunch of food from the pantry and am giving it away. I haven't gotten into the freezer yet.

I ate more fruit yesterday than I normally eat and today I am more loose. I took a half of an imodium this noon to keep it in check. Prior to today I have been very normal with alternating between 2 and 1 budesonide a day.

[Sheila]

Oh my!! You must have been in shock when you saw those results. Well, I'll be prepared for the worst. For an old hand like Tex to have cross contamination, anything is possible.

I'm going away for a few days and will get going on the testing next week. I know I will come back sick and would stay home if I could.

I'm at the point of being so tired of being both sick and tired, I'm willing to try anything. However, I will wait for the test results before totally giving up my brownies. I did stop putting walnuts in them and use pistachios instead. Big sacrifice, right? I don't know what genes make humans so stubborn and thick-headed but I definitely inherited them. I think as I've gotten older I've also gotten a "what the Hell" attitude that I didn't have before. Probably what makes old people so obnoxious.

Sheila W

[fatbuster205]

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? :(

I had not even heard of this and am interested in knowing more given I have asthma and hay fever.
Also, does everyone who has MC have food intolerance? The reason I ask is that again I have never been able to establish a trigger food or foods for my symptoms - I could not tell you why I am having the current flare. And as I tested negative to caeliac disease I never thought about gluten or anything else. The only thing I notice is I cannot take a lot of milk - particularly in the morning - yet as a child a pint of milk was no problem! But put custard in front of me at any time of day or night and I will happily eat it! I eat well and include a lot of fresh fruit and vegetables - including those I grow myself. I eat wholegrain bread, pasta etc all the time although my main carbohydrate would be potato - I am Irish after all! When I see my consultant I am going to seek his views about doing an elimination diet as I would want him on side. The one thing I have noticed (until this flare) is that I prefer a low fat diet. And I eat eggs from my own hen!
BTW the chicken soup idea is great - I made a big batch - not bad given I have never made it before - and it is certainly making me feel a bit better.
Anne

[fatbuster205]

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

That is good to know, Tex! I love my spuds!

[tex]

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? :(

I had not even heard of this and am interested in knowing more given I have asthma and hay fever.
Also, does everyone who has MC have food intolerance? The reason I ask is that again I have never been able to establish a trigger food or foods for my symptoms - I could not tell you why I am having the current flare. And as I tested negative to caeliac disease I never thought about gluten or anything else. The only thing I notice is I cannot take a lot of milk - particularly in the morning - yet as a child a pint of milk was no problem!

It's good to see that you're feeling better. Regarding your questions:

Though not all of us seem to show the clinical symptoms of leaky gut, the research that I've done for my book shows that everyone who has any IBD (including Crohn's, UC, celiac disease and MC) has increased intestinal permeability (leaky gut). Everyone! The primary differences between us that probably determines the level of clinical symptoms is the degree of increased permeability -- the leakier the gut, the more damage to the intestines.

Dr. Fine's research shows that 69% (if my memory is not playing tricks on me) of those with MC have gluten-sensitivity. Looking at lab test results for the members of this board, it appears (without doing a careful mathematical analysis) that over 90% of us here are sensitive to gluten, and most of us are also sensitive to casein (the primary protein in all dairy products). Over half of us are sensitive to soy, and some have other food sensitivities.

After I got sick, and my doctors couldn't figure out what was wrong with me, I stared keeping a food/reaction diary (referred to by some members here as a "winning-the-poo" diary ). I couldn't see any pattern in my reactions, either -- I seemed to react to anything and everything, without any rhyme or reason.

So after doing some research, I cut gluten out of my diet (permanently). After that, I started to see a little improvement, but still kept getting sick, in a cyclic pattern. By testing various other foods, I decided that I was sensitive to a lot of foods, but I was never able to achieve remission until I finally bit the bullet and removed all of the suspect foods from my diet. I avoided them for over a year and a half, and after that, I had healed enough that I was able to add some foods back into my diet.

Anyway, my point is, the half-life of anti-gliadin antibodies (gluten antibodies) is so long, that most of us cannot tell that we are sensitive to gluten until after we have removed it from our diet long enough for the antibody level to decay somewhat, so that our gut can do some healing. As long as we continue to eat it, it seems fine. That's why it's so difficult to convince so many people that they are sensitive to gluten -- they can't tell, because the anti-gliadin antibodies are dominating their immune system responses.

Tex

[DebE13]

Thanks Gabes & Marliss-

I'm learning baby steps. It's a big change but hopefully in another 6 months I'll see more improvements. I get nervous about eating such a limited diet but I guess there isn't much choice since I know what happens whene it's ignored. Thanks for the link, Marliss. I'll have to look at it again with a less hostile attitude. It would be so much easier, I think, if I could blame someone/something for this (although I know that wouldn't really help either). I guess this is just the way it is.

It's so nice to have people that really get it.

[JFR]

This thread started out with Marliss talking about Loren Cordain's book "The Paleo Answer". I just bought it and have spent most of the day reading it. It has a very clear section on leaky gut and autoimmune diseases. He's got me convinced, although I was most of the way there already having been convinced a long time ago but still not quite careful enough with my diet. Now I know why a whole lot of foods truly need to be avoided including the big 4. I can't recommend this book enough.

Jean

[tnelson]

I think you are very right, Tex. My father had terrible ulcerative colitis and I'll bet I inherited my big "celiac" gene from him, but my mother apparently also passed on a gluten intolerant gene as well (I'm one of the double DQs). Dad also withstood earthquake-level headaches, just like me. I can't believe how the headaches disappeared within days after I gave up gluten. It was magical. However, the gut is a much more difficult saga.

Sadly, Dad resisted changing his diet despite the advice of his two sisters and his mother who all attested that they too had trouble with "wheat" and tried to tell him. And of course, EnteroLabs was non-existent. I doubt gluten was really known before his colon was removed after years of suffering. He has since passed away. I would not be in the least surprised if he and I share a propensity toward increased intestinal permeability. My sister and brother are also afflicted.

QUESTION: Right now so much is reactive BEYOND gluten. Do I understand correctly that gluten is the foundation of all these problems and this over-the-top reactivity might calm down IF I can absolutely avoid gluten? (I'll also keep away from milk forever, and probably soy and eggs.)

The paleo diet seems incredibly good. Right now I am too reactive for most of it, but I look forward to better times.

--T

[Leah]

Tex is right Anne. I didn't believe for a second that I was sensitive to Gluten because I wasn't getting that immediate reaction that I was getting from eating dairy. Bread felt good! Dairy was the first thing i took out and continued to eat bread and pasta. At the same time, I sent away for the Enterolab tests because I wanted to know for sure before taking everything out. I found out I am IgA deficient - which means I can't be tested! That's when I decided to go gluten free since so many people here insisted that I wouldn't heal if I didn't. It took a while to see a difference, but I did. The salad and fruit was next. Once I got use to this diet and continued to heal, I am now VERY AWARE when I eat something that upsets the balance.... but right now your intestines are inflamed, so everything will seem to bother it. You won't be able to tell the difference until after you get some of the inflammation down. Sorry :(

I know it's hard to accept, but at some point you will have to if you want to get better.
Best of luck.
Leah

[Sheila]

I just got The Paleo Diet on my kindle and will read it on the plane. Also ordered a follow up Entero lab test and hope to get that done and mailed back next week. The MRT will have to wait until I get back from my trip. I am so scared that the few remaining foods that I truly enjoy will be taken away. I don't know why I never connected "leaky gut" with MC and celiac disease. I didn't know what a "leaky gut" was and it sounded pretty horrible.

My mother lived to be 92 with chronic diarrhea that only got worse as she got older. She called her home "The House of SH<#" Poor lady went to a dietician who prescribed all of the things she should not have eaten. She knew she had MC but did not want to hear about a GF diet. The entocort worked for a while but she continued to eat gluten and went on and off entocort at will.

I just threw out all of my much loved old wooden spoons. They were probably pretty contaminated but that never occurred to me. Wonder if that caused the flare.....

Sheila W