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I talked to Phyllis the nurse from enterolab today. I was driving and parking and cutting out, so I hope I understood her correctly. I didn't have the numbers in front of me so I couldn't ask specific questions.
According to what she said the numbers represent the length of time I have been reacting to a certain food. The only thing I am "permanently" sensitive to is gluten. However, over time, as the gluten reaction I have been having settles down, I will be able to add back ALL the foods to which I had a reaction in moderation. The ones, like oats, to which I had less of a reaction, should be OK, again, in moderation. And I should prepare them in different ways when I eat them.
She said I show good IgA formation, so I should be able to fight the sensitivities when the gluten sensitivity is under control.
Did I understand? This doesn't seem to fit with everything I have been reading. I am puzzled. My head is about as fuzzy as it can get when I am conscious, and I am totally exhausted. I might be completely confuzzled (mixture of confused and addled!)
I can see how you certainly may regain the ability to safely eat the foods in that "11 antigenic foods" panel, but reaching a point where you would no longer be sensitive to casein and soy, is news to me. Maybe that's new information, though. I was certainly sensitive to many foods at one time, but when I tested soy, eggs, and yeast, 3 years after starting the GF diet, all three tests were negative. Unfortunately, I didn't have an earlier reference test, though, because I wasn't even aware of the existence of Enterolab back when I started the diet.
Yes, the numbers on the test results may roughly correspond to the length of time that you've been reacting to those respective foods. IOW, the longer you've been reacting, the higher the numbers will be, but they're certainly not exact, since each ELISA test kit has it's own unique calibration characteristics.
Lesley wrote:Did I understand?
That's just one of many reasons why we're not supposed to be using a cell phone while driving.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Some of this is strange to me. I asked Phyllis if I showed so much sensitivity to chicken and rice because I had been eating nothing but for a few weeks prior to doing the tests. It seemed strange to me that those 2 foods should be top of the pops.
Truth is, though I love rice with certain foods, I didn't eat it that often before. Chicken is another story. I ate it about 2x a week.
I am still trying to figure it out. My sensitivity to gluten triggered the other food sensitivities? And I have been sensitive to them for a long time but have been asymptomatic during that time? My head is so fuzzy! I know I am not thinking straight. I am pretty sure that's what she said.
Lesley wrote:That's why I use a hands free phone in the car.
Reception will still cut out, when you pass through an area with poor signal strength, whether it's hands free or not.
Lesley wrote:I am still trying to figure it out. My sensitivity to gluten triggered the other food sensitivities? And I have been sensitive to them for a long time but have been asymptomatic during that time?
IMO, yes, gluten is always the primary allergen. If you've had C for years, you haven't necessarily been asymptomatic, though. Your test numbers aren't particularly high - just moderately high.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
So basically once I have cut out gluten I should start to feel better. Any idea why I am not? I am feeling worse. I can't get my head around this. Why, if I have stopped eating anything to which I am sensitive, am I not feeling better?
I KNOW it takes a long time to heal. I am not talking about being healed and eating everything except gluten. Just about not crawling around feeling like I am dying all of the time. And not even eating everything, just a bit more than potatoes. Even just some of the time, especially if I AM living on potatoes?
Just changing the diet will not bring relief, at least not for a while - the gut has to do some significant healing, before you'll begin to feel much better. Your immune system will probably continue to produce antibodies to gluten for roughly 2 years. As long as you avoid gluten 100%, the new anti-gliadin antibodies won't become activated, so the production level of antibodies will slowly decline, but anti-gliadin antibodies have a 21 day half-life, so it will take a long time before your antibody level will decline enough to be below the threshold for a reaction.
You'll eventually begin to improve, but it's somewhat like being bitten by a rattlesnake - just getting away from the snake won't bring immediate relief. It takes a while for the venom to get out of one's system, and then it takes a while for all the damage to heal.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Lesley, I'm on my tenth month of this, and I am continuing to improve. I didn't have as many other health factors contributing as you are dealing with, which was lucky for me. I also was taking no medications. I know you are doing your best to remove drugs from your regimen, at an appropriate pace - and I'm not suggesting you speed that up, which could surely cause other problems. It's just one more thing your body is working through, and it all adds up.
I also have been a huge hydration fan for years. I know that's an area where you have to be careful to strike a delicate balance, but it definitely helps move things along, in more ways than one. In addition to helping with C, most of us need to work much harder on hydration when we're healing (from anything, not just MC). I know that's not easy from where you're sitting.
It's also really important to eat enough protein, I learned the hard way. We need much more protein to heal than we do to maintain health. I lost a whole lot of muscle mass, rapidly and frighteningly, before I got this under control. I am still eating meat portions at least as substantial as my (larger, more active) husband does.
I understand that I have to wait for the new anti gliadin antibodies to regenerate and not to be activated by gluten, and allow my system to heal. But what about the things to which I am reacting? Like poultry? Foods the tests didn't ID. Why are they sending me screaming to the toilet? Why are they causing me such pain? Do they activate the antibodies?
Sorry I am so dense, but I am really trying to figure this out. Because my gut was SO damaged by gluten is it that I react to certain foods, which aren't absorbed as they should be. Now that I have been off gluten for weeks are these foods just a continuing reaction? Does what Phyllis told me yesterday mean that over time, as the IgA's regenerate and my gut heals I will be able to add in those foods? Am I understanding it correctly now? Is it like an allergy to bee stings (me), where the first one won't kill you but each subsequent one is worse?
Sara, I know about hydration and I am always arguing with my doc about it. Right not I seem to be stabilizing, a little low, but not like it was - life threatening. My brother (physiologist) claims that if you are thirsty you are already dehydrated. Other scientists disagree, but hydration is really important. I am have been dehydrated. I know what it looks and feels like.
Anyway, electrolyte infused water seems to be helping, and i am drinking a fair amount.
BTW - Phyllis told me to try to sow a few oats (in my stomach) and see what happens. I ate a handful of gluten free oat granola this morning, with no ill effect, beyond the cramps, bloating and discomfort I have been feeling all along. I keep waiting for it to cause an explosion, but it isn't...so far.
Lesley wrote:But what about the things to which I am reacting? Like poultry? Foods the tests didn't ID. Why are they sending me screaming to the toilet? Why are they causing me such pain? Do they activate the antibodies?
Apparently they do.
Lesley wrote:Is it like an allergy to bee stings (me), where the first one won't kill you but each subsequent one is worse?
That's a decent analogy. Your antibody level gets a little higher, with each subsequent exposure.
Lesley wrote:I keep waiting for it to cause an explosion, but it isn't...so far.
It took me 6 weeks to begin reacting to oats, because I only ate it twice a week, and I hadn't eaten any in years.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I think your current state of reactivity/inflammation might be so high that you're just reacting because you're reacting. When things are a little more stable, you will know for sure whether you have a duck-specific reaction (for example), or whether anything you might have eaten at that meal would have had the same result.
In the beginning, air, water, and light made me react. Fortunately, all those things are working for me now... Similarly ANY grain caused me to bloat, immediately, but I definitely tolerate rice and corn now (and apparently sorghum, which someone used in a Thanksgiving dish he baked). I don't eat grains regularly, but the non-gluten grains don't cause me to react. A lot of foods I can eat just fine seemed to be the problem, back then.
You had kind of a perfect storm of an MC crash, and I think that's why it's taken you longer to slam the brakes on it. (Or at least part of why.)
Not even the MRT tests look at every single food, and even those results have to be tested. I think you're right to use your Enterolab results to narrow things down, but I believe that not everything you are reacting to at this point is necessarily a true sensitivity, and until things settle down and C is rare for you, and not constant/intermittent with horrible D, you won't be able to test foods reliably.
Lesley
i agree with Sara, your body/digestion got the stage of 'i am not doing this anymore'
since joining this forum you have tried new things, changed your eating plan and you are diligienty trying to mentally absorb all the elements and idiocryncrancies of MC.
now that the GERD is improved, try to stop and catch your breath a bit, i totally get that you want to fix this NOW! for most of us there is no quick fix or quick cure
take it slow an steady and give yourself the time to assess if your body is ok with a recent change.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I have been trying so hard to understand what is making me feel so bad. Worse and worse, instead of any better.
The GERD is only kept in check if I suck on rock candy. Last night was SO bad I had to put some in my mouth all night so I could doze on and off. I took potassium powder 4x.
So that's the GERD. Struggling with it.
The D - The turkey definitely sent me to the toilet 2 days running (no pun intended), and the next day duck did the same. Potatoes mashed with beef stock didn't do it at all, nor did lamb, and now I am on day 3 without a BM - heading into C territory. But stomach bloated to 6 months pregnancy level, skin tight. I was gurgling last night, and in fact making up a song to the tune of "Strangers in the Night", only substituting Gurgles for Strangers. But the gurgles were not as bad as they were when they resulted in D.
I have been eating lamb and fish, and once a week beef for protein. I am trying to get as much as I can.
Tex - I am only going to have oats once a week, and then not much. One handful. I am trying to do it in moderation.
I am not sure whether to take a stool softener, hopefully to avoid having the C as badly as it was last week.
I know there is no quick fix, and I am persistent, if not patient. I am SO tired all the time, too exhausted to do anything at all. I have to force myself to move, go shopping, exercise etc.
If not for the wonderful people on this forum I don't know whether I could do it.
IMO, if you're taking pain pills, you almost surely need a stool softener, but that's just my unprofessional opinion, of course.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
don't the label directions offer any guidelines on dosage?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Visit the Microscopic Colitis Foundation Website
My head is about as fuzzy as it can get when I am conscious, and I am totally exhausted. I might be completely confuzzled (mixture of confused and addled!)
