Two steps forward, one step back...

[C.U.B. girl]

Well, shoot. Just when I thought I had turned the corner on this flare…. BAM! Something at dinner hit me within 10 minutes of leaving the table and I was back in the bathroom twice within five minutes. My gut is still sending up loud noises of complaint and protest….

When it seemed I couldn't get this thing under control, I went back to all the "advice for newbie" posts to see what I could glean that I hadn't read two years ago when the CC first hit. The sticky just above ("Starting over dealing with MC…..") recommended eating just meat until things settled down, so that's what I did --- and it worked like a charm within three days. Nothing but "safe" meats and bone broth, plus back on my Zyrtec and Benadryl, and the D was down to once a day. So I began to add things back in slowly…. a little rice, a little white potato, some sweet potato, even some watermelon and a few cherries, with no reaction. Yesterday there was no D -- no nothing, in fact! And no Immodium either.

So tonight the hubs -- who has suffered patiently through all my diet changes and gone out of his way to keep me supplied with meat and whatever else I can eat at any given moment -- asked if we could have a certain dish he really likes, and since there was nothing in it that I was sensitive to, I agreed. I had also made, in a weak moment this afternoon, a dairy-free/egg-free coconut pudding. The main course settled fine, I think. The pudding made me feel just a little bloated right away, but I figured it was because I hadn't had anything sweet in a long time…..

And I think that was what caused the sudden cramping and rush to the bathroom 10 minutes after dinner…. Is there anybody else in the universe intolerant to coconut? I've never had a problem with it before, and I hate it, because coconut and coconut oil are supposed to be good for you, and I have a ton of it, in various forms, in my pantry….

It also made me wonder: how could something liquify my bowels within 10 minutes? Or is it such an irritant that it makes the bowels empty their contents even though they haven't finished their work yet? Gross questions to ask, but this is the only safe place to ask 'em...

Otherwise, I had been doing pretty good up until now, with the bland meat-heavy diet. Guess it's back to bone broth and meat tomorrow, until things settle down again. I have an appointment with the GI doc on Tuesday of next week….. wondering if I should keep it, or just try to get things straight with diet alone…..

[tex]

Cindy,

Sorry to hear about that reaction. As fast as the reaction began, that had to be an allergic reaction (IOW, IgE-based) aka a mast cell reaction. True coconut allergies (anaphylactic reactions) are rare , but IgE-based gut reactions to coconut are not so rare (though not really common, either).

Sugar would do that for many of us (including me), but sugar typically takes longer to initiate the D (IOW, it's more a case of not being able to digest that much sugar, sort of like lactose intolerance, rather than an antibody-based reaction).

The puzzling part is that coconut is not generally considered to be a high-histamine food. Maybe something else set you up, and the pudding was just enough to push you over the edge. Sometimes stuff happens that we just can't explain.

Don't feel like the Lone Ranger. I lowered my guard and got "caseined" by cross-contamined oil during a 4th get-together. Fortunately my reaction was fairly minor, and didn't last long. The worst part was osteoarthritis symptoms the next morning.

Hopefully you'll recover quickly.

Tex

[C.U.B. girl]

Interestingly, I had taken a Histame capsule about 20 minutes before dinner, "just in case" there was something in there that would trigger a histamine reaction. So who knows? I suspect chicken may be an issue -- I tested the theory by having about ½ a chicken breast for dinner last night, with just some rice and a sweet potato (neither of which I have had any reaction to). So there was one brief episode of D this AM, after nothing all day yesterday. However ---- I had seasoned the chicken with a some coconut aminos. Most of it was just on the skin, which I removed before eating, so I don't know whether it was the chicken or the coconut aminos that was responsible for the D.

Argh. Guess I'm going to have to use nothing but salt for seasoning for a while….

[Leah]

I seem to have those sudden fast reactions occasionally, but I'm not as careful as I should be all the time. The other day, we were driving back from a family gathering about 3 1/2 hours away. There was horrific traffic and I got hungry. There was nothing in the car I could eat except an apple from my father's tree… so I ate it ( peel and all). Not good the next morning… and I haven't been well since. It might take a while to get back to where I was, but I'm kind of use to these episodes. Hope you get back to "normal" soon

Leah

[tex]

Interestingly, I had taken a Histame capsule about 20 minutes before dinner, "just in case" there was something in there that would trigger a histamine reaction.

Hmmmmm. Maybe we're barking up the wrong tree.

Tex

[Lesley]

What else was in the pudding?

[nerdhume]

Trying to figure out the puzzle is very difficult. It can take 72 hours for something to make it all the way through digestion (longer if there is C). That is why the 3 day wait after trying a new food. Obviously if food is eaten it cannot be turned to water and exit the other end immediately. There are so many variables that may cause a reaction.
I added canned bean dip on Monday, Tuesday, and Wednesday. Added pickled beets yesterday. Adding a couple of foods each week has changed my diet to something very tolerable.

[C.U.B. girl]

Lesley, the pudding was very simple: 3 C coconut milk, ½ C coconut flakes (organic, unsweetened), ¼ C sugar (organic, unbleached), 1 T gluten-free vanilla, and a couple of tablespoons of cornstarch (non-GMO). Up until that meal, I hadn't had anything with sugar in it in at least a month, so maybe it was sugar overload (although the amount I actually consumed in what little I ate probably wasn't more than ¼ t). I've never had issues with corn before, but maybe I do now, and it was the corn starch…. ? Who knows…..

I went back to meat, bone broth, and a little rice yesterday; then an hour after I went to bed last night, had terrible stomach cramps and another big round of D. Whatever was left made it's exit this AM when I got up…. Washing down my Immodium with bone broth for breakfast.

Theresa, I am kicking myself for rushing things. Obviously it was WAY too soon to be adding so many things at once (even though none had ever been an issue before); my gut is likely still too inflamed to be able to handle much of anything at this point, and that one meal has set me back again.

I'm starting to feel malnourished again, and have been looking into multi-vitamin trans-dermal patches since it's apparent I'm not going to tolerate or absorb anything I take by mouth. Has anyone had experience with those? What brand would you trust? The hubs, bless him, got me some magnesium gel at Whole Foods the other day since I was starting to have leg cramps, but I've never seen a multi-vitamin cream or gel anywhere...

[dfpowell]

Cindy,

When I read your post, I was thinking the coconut may have contributed to your reaction.
Coconut milk and flakes are on the FODMAP list of fermentable short chained carbohydrates to be careful with, as it could cause gas and bloating. It can be hard to figure some of this stuff out.

[nerdhume]

Cindy,
I make coconut pudding with coconut milk, vanilla pudding mix and coconut flakes. It works fine for me now that I am in remission. Previously the same thing irritated and caused pain, I think because of the fiber in coconut and also maybe the 'scratchiness'.
That's what I mean by puzzle, the same food might be ok one day and not another. Or combined with one food ok, by itself a problem.
Since you have celiac all that 'hidden' gluten we talk about would effect you more.
Is ALS an autoimmune disorder also? I didn't realize gluten effected epilepsy until I ran across a couple of articles:
http://bodyecology.com/articles/the-sta ... 7_6qKxOUa8

[C.U.B. girl]

That's interesting about the FODMAP/coconut thing, Donna! Thank you for sharing that -- with all the great press that coconut, in all of its forms, is getting these days, it's easy to fall into the trap of thinking it must be good for ALL of us. Apparently not….

So glad you can enjoy coconut now, Theresa! I've never experienced any issues with it before this, but my gut is not fond of it at the moment it seems…. Didn't even think about the "scratchiness" aspect of it, but you may be on to something there!

As for ALS (Lou Gehrig's disease), my grandmother contracted it when she was in her late 70's and died of it at 83. The "experts" say it ordinarily affects much younger people. However, all three of my sisters have Lyme disease, and there is much evidence that ALS is often mis-diagnosed and is actually Lyme disease. She also suffered from hearing loss and vertigo issues, as does the sister with the worst case of Lyme. I've taken the Western Blot test for Lyme, and it came back negative, but then it often does, as Lyme hides behind the cell wall, and must often be coaxed out of hiding prior to testing with a couple of weeks of antibiotics first. Most doctors will not prescribe antibiotics for this purpose. My younger sister, who has Lyme AND celiac AND ulcerative colitis, has done some research and there may be a Lyme/celiac connection…. The eldest sister has Lyme and dermatitis herpetiformis. Mom has what her neurologist called "silent seizures", a type of epilepsy; my niece has epilepsy (and possibly celiac -- hasn't been tested yet). My son also has celiac. All this is TMI, I know

Let's just say, my gene pool needs a "shock" treatment…..

[nerdhume]

Many of us here have more than one symptom and more than one AI disorder, so I guess our gene pool may need more chlorine as well

[nerdhume]

My friend's Mom died of ALS and she said for the last couple of years she was just locked inside her on body. She couldn't talk or write so they had no way to communicate. My friend is afraid she will get it too, from the gene pool.
Apparently there is a link to diet.
http://www.glutenfreesociety.org/gluten ... rosis-als/

[Grahm]

One of my best friends has ALS, we think she's in maybe 2 1/2-3 yrs. She is now confined to a scooter. It has broken our hearts. It is such a cruel disease....

[Gabes-Apg]

Cindy,
Have you and/or your siblings been tested for MTHFR and/or Pyrrole??

Both of these are gene mutations, linked to people having multiple AI issues.
Long story short, they cause the body to make 'dodgy cells'. When the AI issues are chronic the cells become way worse. When inflammation linked to the AI issues is ongoing this heightens the issue of Vit D3 deficiency, magnesium deficiency etc etc. (and makes it harder to correct it)

The good news is they are fixable. They require specific compounds/nutrients, some in high doses.

If you are interested in further info let me know.
As they are both genetic, your son may have it. If you find out now, and apply the necessary fixes, you can end his AI issues!!