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I'm curious as to what others think of the following explanation I came up with. Sometimes I find it extreemly difficult to put into words what might be going on. One because I don't understand it completely yet myself and two because what I do understand is hard to describe to those who haven't read every thing that I have. So with that said what do you think of the following paragraph. Does it make sense? Am I wrong or off base on my understanding thus far?
One problem I have is that I’m still learning about what is going on and so I have a hard time describing what the problem is. I’m going to try to describe it as how I see it so far from what I’ve read and understand. My body for some reason or another has decided that the protein gluten is a bad thing. It attacks this protein in the same way that it would flu or bacteria. It produces antibodies to “kill” this bad thing, and will forever (just like it does for flu strains) be on the lookout for this protein. So when I eat something that has gluten my body gets flu like symptoms, tired, achy, diarrhea, nausea, constipation you name it. Also my body tends to be more sensitive to things once I’ve eaten gluten, I think this is more to do with my immune system being on the look out and also due to my colon being inflamed (this is what colitis means, inflamed colon). So foods that might not normally affect me on a day to day basis when not eating gluten tend to give me problems when I’m in this not so stable condition. These foods seem to be extremes on the food scale, like high insoluble fiber, high acidity, etc. I think that this hypersensitivity with my immune system makes me more sensitive to stress, but I’m not sure about that.
Not a bad explanation, but it might lead to more questions for some.. I guess explaining it depends on the audience.
Usually, when explaining my illness, I simply say: "I have a hereditary allergy to many foods, and if I ingest them, it causes damage to my digestive organs, which could lead to organ failure." This usually does it for people who don't really care. Those that do, usually ask how I got this condition or if I've had it all my life. To this I say: "I've been genetically predisposed to it, having inherited the gene for food sensitivities from one of my parents, but it didn't affect me until February 2004." Those that are satisfied will stop there. Others will go on to ask about the allergic reaction itself, because there are all different types of reactions, to which I specify: "The reaction I have is an IgA reaction. The type you have when you get hives or anaphylaxis is an IgG reaction. The difference is that a reaction like mine is more based in the digestive system, and involves antibodies attacking my organs, where an IgG reaction involves the antibodies reacting to histamines."
Sometimes at this point, they ask how I know this or what happens. Usually I just give them a little info at this point, because otherwise the inquisition could go on forever. I simply say "my reactions started in my colon and went to my gall bladder. I've since removed the allergens from my diet, so I don't react as often. I know this because I had tests from a specialist in Dallas, TX."
Anyway.. compare and contrast.. it's all about how much info YOU want to give them. This is all YOUR business, and frankly, you don't have to share it with anyone. I do, to educate, because it's obvious that these days, parents will go on feeding their kids every microwavable meal they can get their hands on, oblivious to the detrimental effects this could have on them later in life. Altho I was genetically predisposed to getting this, my parents didn't have it, or if they are yet to get it, they didn't have it NEARLY as young as I did. Frankly, I feel this is to do with several things: A) the horrible foods I was fed as an 80's and 90's kid, B) the overuse of prescriptions to treat problems that could be treated without them, and C) the increased amount of stress in the world today. My parents were both raised in households where they ate foods made entirely from scratch, and they only went to the doctor if they were missing a limb.
Thanks Christine, I guess the explanation is more for my wife than anything. So she would need to know more about what is going on. Particularly why it seems that "All" foods seem to affect me. I know that not all foods affect me, but when I seem to have times where I'm better and other times where I'm not and I'm eating things that don't contain gluten it's confusing as to what is cause and what is not.
Hi Mike. I've come up with what I think is a good explanation for my illness and can adapt it for you. But first I need a little more information from you:
1. Have you been formally diagnosed, by a pathologist, with MC/CC/LC?
2. Have you had these tests for Celiac (if yes, results?):
(a) small intestine biopsy?
(b) anti-gliadin blood tests?
(c) test for the Celiac genes - HLADQ2, HLADQ8?
3. Have you had Enterolab stool tests for gluten sensitivity (if yes, results?)
I apologize if the above answers are elsewhere at thie board. If they're there, it's just like my sunglasses on my head - always looking for them and not finding them!
Carrie wrote:Hi Mike. I've come up with what I think is a good explanation for my illness and can adapt it for you. But first I need a little more information from you:
1. Have you been formally diagnosed, by a pathologist, with MC/CC/LC?
2. Have you had these tests for Celiac (if yes, results?):
(a) small intestine biopsy?
(b) anti-gliadin blood tests?
(c) test for the Celiac genes - HLADQ2, HLADQ8?
3. Have you had Enterolab stool tests for gluten sensitivity (if yes, results?)
I apologize if the above answers are elsewhere at thie board. If they're there, it's just like my sunglasses on my head - always looking for them and not finding them!
Love,
Carrie
1) Yes. LC
2) Yes, but I'm not sure about which tests. Need to get records from Dr. But they came back negative for CD.
3) Yes. All tests, and came back positive for Gluten Sensitivity (stool and gene) and have the gene for CD.
Ok Mike, here goes! As I also have LC and may or may not have Celiac, my "story" is similar to yours up to a point. Here's an unabridged version (for your wife and others who really want to know):
"I have Lymphocytic Colitis (LC), a rare form of Inflammatory Bowel Disease (IBD). The more prevalent types of IBD are Crohn's Disease and Ulcerative Colitis. LC can be diagnosed only by a biopsy of the large intestine. There is no known cause or cure. Medications may help to alleviate the symptoms but they do not cure the disease. Many people with LC also are sensitive to gluten - a protein found in wheat, rye, barley and sometimes oats - and report good results by eliminating all gluten from their diet. And sometimes LC just goes into spontaneous remission and no one really knows why."
"In addition I may also have Celiac disease - an inherited, autoimmune disease that damages the lining of the small intestine in response to eating gluten. While some of my tests for Celiac were negative, I do have the Celiac gene which puts me in an 'at risk' category. Celiac can manifest itself at any point in life. It is 'treated' by eliminating all gluten from the diet - forever. Once a Celiac always a Celiac."
You take it from here, Mike, as gluten does not seem to bother me. I say "seem" becuase I, too, have the gene but haven't yet had Dr. Fine's gluten tests. I agree with the others that for casual inquiries it is easer just to say "I have Celiac and cannot eat gluten." Sometimes I tell people, because a lot of people knew I was so sick earlier this year, "Yes it was diagnosed as a rare form of colitis and I'm better now" (no need to explain "remission" right?).
What I'm hearing you try to explain to your wife, mainly, is that when your gut is inflamed by gluten reactions, you react to "everything" or so it seems to your wife. Probably just ALMOST everything to you! Ha!
This is what happens to me (or should I say happenED). When I would eat gluten, in a day or two, I'd feel the effects, so I'd think that what I'd JUST eaten was the culprit. Fortunately, I was relieved of pain so quickly just by leaving off the main sources of obvious gluten, that it was a no-brainer that I reacted to it pretty severely - similar to a poison reaction in severity.
After this discovery just by leaving off major gluten sources, the degree of severity of the diarrhea lessened markedly, but since I was still discovering more minute, and hidden sources, and still had the other three things to discover, I was still not having Normans until I left all that stuff completely out of my diet.
Anyway, the reason I decided to do the testing was because at that point, I was eating so many possible "allergens" that, not knowing the length of time from when they were ingested to their reactions, it was just going to take too long to figure it out, so I decided to just go ahead with the complete panel of gene and stool testing with enterolab and save myself the trouble.
As it turned out, I had the main genetic marker for celiac plus the gene (turns out it came from my dad) for M.C. Obviously, I had gluten sensitivity which was verified, and also the dairy for which I had a great deal of suspicion, but hadn't attempted to give it up at that point as I was relying on alot of dairy containing foods to fill the gap, like certain gf puddings, for instance.
At this testing, the anti-tissue transglutamine antibody showed up in the stool which indicates damage to the villi. Whether or not it would've been enough to show up on the blood tests, guess I'll never know. Also, I had damage to my small bowel as indicated by the excess of fecal fat in the stools.
Eliminating the dairy as well meant that I would only have rare set backs in the consistency of my stools, so at that point, I knew I was reacting to at least one other thing, but that thing wasn't now an everyday part of my diet.
I suspected eggs, but decided to go ahead and test for eggs and dietary yeast. The eggs being positive didn't surprise me, but the yeast part did, particularly since I wasn't eating anything that intentionally had yeast in it without eating the former baked goods in gluten-eating days of yore.
Sure enough, once the eggs were gone, I went straightway to formed stools all the time except for when I would eat something with soy in it, so I've left that out, but really need to verify that by testing as well.
What gluten, in particular, does for me, among a host of other serious things, is to sensitize my nerves so that they OVERREACT to stimuli (so called "trigger foods" in the area of the gut).
Trigger foods include things like caffeine, spicy foods, etc. which are called "secretory." We have what's called "secretory diarrhea."
In other words, if you've inflammed your body with antibodies to gluten, these so-called trigger foods will "set you off" very quickly after you eat them. Otherwise, particularly if your gut's had time to heal from remaining off gluten long enough) you should be able to eat a reasonable amount of these secretory stimuli without a problem with diarrhea.
I believe that the so-called IBS response occurs when something (in our case, gluten reactions) sensitizes the innervation causing contractions in the gut, like a little seizure.
The equivalent, in the case of migraine attacks, would still have other "immediate triggers" when conditions are right (lots of circulating antigen-antibody complexes), thus the observation that "SOMETIMES rapid barometric pressure 'causes' me to have migraines" or "SOMETIMES flourescent lights 'cause' me to have migraines (or some other light source)" or else "SOMETIMES a change in sleep patterns does it, other times NOT."
Anyway, I suspect that there are some people right here on this board who react almost as strongly, if not more strongly to other "allergens" in addition to gluten, so I think that would've made it almost impossible for me to have recognized a significant change with just the removal of the obvious gluten at first like I did. Maybe Wayne will comment here, but I believe he's mentioned having more severe reactions to corn than anything, if I'm not mistaken.
Simplest way I can think of to explain the underlying cause of your reacting to almost EVERYTHING sometimes would be to explain that when you eat gluten, it inflames your gut to the point that it makes many things impossible to digest. When you don't eat it long enough, things calm down.
Do you think your wife, at least, would be satisfied with a simple answer like that? (I'm just trying to read between the lines a little to decipher what she's really wanting to know.)
What do you think she's actually wanting to know, Mike? Perhaps narrow down her question with her to specifics, and then just answer what she's asking. I'm sure we'd all be glad to have you come back when you've gotten the answer to this if I've not read her right, just guessing from your original post.
Wow, Mike, this got way too long, and probably you've read all this before.
Sounds like a good explanation but there will always be the follow-up questions. Personally, I have just stopped explaining to people since being a vegan and GF the questions are just too numerous.
Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
