Hi everyone,
I just saw my GI a few days ago as I had a recurrence of D that started after a meal of Chinese food and then lasted me about 6 weeks. It was preceded and accompanied by a strange tugging/gnawing sensation on my lower left side that started about 3 weeks before the D kicked in - so they could be unrelated. (It's worth mentioning that I also had this weird feeling back when I was Dx with LC and had a polyp removed but the sensation disappeared after the polyp removal - so I figured the polyp must have caused the weird pain/sensation). Now that the tugging/gnawing is back I wondered if it were possible for a polyp to have returned since last October (and thus causing this weird feeling) - he said, no, that it wasn't possible for a polyp to grow that fast. He also had me lay down and examined my abdomen - pressed on the area where I have the sensation and said that it was way too low for it to be my colon. He said it was most around the lower area of my abdominal cavity, along the actual wall of it. He said it might be a pelvic ligament that has been damaged but it feels exactly like it did with the polyp - so I have my doubts.
OK, so back to the D. I mentioned this site to him and that members had found success in controlling D through diet. He said that there is no data to show that diet has an effect on LC. That is will come and go throughout life without explanation. (I disagree with that, though, as I've had D after accidental ingestion of gluten - I know what my body reacts to.)
I asked him if I could be tested for allergies, to which he said YES. He has an allergist that he shares an office with and I scheduled something right away.
But, now that I think of it, would this necessarily be helpful in your opinion?
Should I go through with this testing? My insurance is good and will pay for this so cost is not a huge factor.
What foods should I test for? I know that I am sensitive to gluten and allergic to casein and egg whites. My former allergist did not test extensively for foods back in 2002 or so as it was an initial, broad spectrum, test.
I am thinking of testing the following foods: wheat, corn, soy, tomatoes, beans, rice, lentils, peanuts, other nuts, and retesting the milk/casein to see how sensitive I am these days.
What other foods should I add in that are common triggers for LC?
Should I ask for any particular method of testing over another in order to gain the most accurate insights?
I realize I should get tested over at Entero Lab and will do that as well.
Thank you everyone!
Should I bother will allergy testing?
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EastWestGirl
- Little Blue Penguin
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Linda,
I had similar pains when my symptoms were active. In retrospect, I have a hunch that mine were caused by adhesions, (as found by later surgery). While the interior surfaces, (the epithelium), of the GI tract has very few pain receptors, the exterior surfaces, (the serosa), and the mesentery, (the supporting membraines), do indeed have pain receptors, and that is why adhesions and endometriosis often cause pain.
http://www.wjgnet.com/1007-9327/16/1442.pdf
IMO, most food sensitivity tests that rely on blood-borne antibodies, or skin reactions, are of rather limited usefulness for someone with the type of food sensitivities that we have with MC. The stool tests offered by Enterolab, and mediator release testing, (MRT), used in conjunction with the LEAP diet program, (we have several forums devoted exclusively to discussions of those testing methods, in case anyone reading this is interested in seeing more information), seem to be the only tests related to food sensitivity that offer beneficial results for most people with MC. Any other testing certainly shouldn't hurt anything, but it rarely provides helpful results.
That said, if you do any alternative testing, please post your results, and your opinion, because that's how we learn new information, and gain new insight into various testing methods. For all we know, we may have been missing something, all along.
If your allergist happens to offer MRT testing, I would go for that, but I would be surprised if they offer it, since it's a fairly recent innovation.
Tex
I had similar pains when my symptoms were active. In retrospect, I have a hunch that mine were caused by adhesions, (as found by later surgery). While the interior surfaces, (the epithelium), of the GI tract has very few pain receptors, the exterior surfaces, (the serosa), and the mesentery, (the supporting membraines), do indeed have pain receptors, and that is why adhesions and endometriosis often cause pain.
http://www.crowngastro.com/faq.phpThe GI tract does not contain pain receptors and therefore any biopsies or removal of polyps will not be felt.
http://gastrogroupofrochester.com/procedures.aspxSometimes the doctor burns the base of the polyp with an electric current. This is called a polypectomy. Because the bowel does not have pain receptors, a polypectomy doesn't cause discomfort.
Technically, he's correct, since limited scientific research has been done regarding LC and diet. However, he's wrong categorically, of course, and out of date with his training, because there are indeed numerous examples of research data showing that diet has a pronounced effect on the symptoms of inflammatory bowel disease, and LC is an IBD, (whether he tends to think of it as an IBD, or not). The following recent research article, published in the World Journal of Gastroenterology, discusses numerous research projects that have investigated this topic, and the authors reached the following conclusion:Linda wrote:He said that there is no data to show that diet has an effect on LC.
The red emphasis is mine, of course.CONCLUSION
IBD has a multifactorial etiology but food sensitivity/intolerance appears to play a role, and the culpable foods vary on an individual basis. Techniques to identify food intolerance require refining. Progress has been made by looking at factors such as IgG4 responses to food antigens, but a large expanse of work exists in trying to determine people’s food sensitivities and the degree to which these affect disease activity.
http://www.wjgnet.com/1007-9327/16/1442.pdf
IMO, most food sensitivity tests that rely on blood-borne antibodies, or skin reactions, are of rather limited usefulness for someone with the type of food sensitivities that we have with MC. The stool tests offered by Enterolab, and mediator release testing, (MRT), used in conjunction with the LEAP diet program, (we have several forums devoted exclusively to discussions of those testing methods, in case anyone reading this is interested in seeing more information), seem to be the only tests related to food sensitivity that offer beneficial results for most people with MC. Any other testing certainly shouldn't hurt anything, but it rarely provides helpful results.
That said, if you do any alternative testing, please post your results, and your opinion, because that's how we learn new information, and gain new insight into various testing methods. For all we know, we may have been missing something, all along.
If your allergist happens to offer MRT testing, I would go for that, but I would be surprised if they offer it, since it's a fairly recent innovation.
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.
The standard allergy testing is looking for a different body 'misfire' than the one in MC, in my opinion. I think for most people, it winds up being pretty worthless. A friend of mine's kids recently had testing - they have autoimmune issues by the bucketful, and I have *seen* food reactions that the smaller son, his mother and I are all entirely certain must be soy. None of them showed any food allergies.
I would be reluctant to build a medical record of a sort your GI respects, and which also says "hey, no prob, she can eat anything!"
There may be a new type of testing in use by this allergist that is more useful, but I have known people to have confusing and unhelpful results from allergy food tests for decades now.
I sure do hope you don't have true food allergies, of the sort that sends you to the emergency room in a race against the clock!!
It would be fabulous if this allergist offers MRT testing. Joe and Gabes have both pursued bio-impedance testing (which seems mostly to be used in the states for body-fat testing?). Joe felt that his results were accurate based on his previous testing. Very promising. I will be looking into MRT or bio-impedance analysis for my "next phase."
If you should happen to graciously share the article in Tex's link, I would be interested in your doctor's response. I bet you will, too ;)
Keep us posted,
Sara
I would be reluctant to build a medical record of a sort your GI respects, and which also says "hey, no prob, she can eat anything!"
There may be a new type of testing in use by this allergist that is more useful, but I have known people to have confusing and unhelpful results from allergy food tests for decades now.
I sure do hope you don't have true food allergies, of the sort that sends you to the emergency room in a race against the clock!!
It would be fabulous if this allergist offers MRT testing. Joe and Gabes have both pursued bio-impedance testing (which seems mostly to be used in the states for body-fat testing?). Joe felt that his results were accurate based on his previous testing. Very promising. I will be looking into MRT or bio-impedance analysis for my "next phase."
If you should happen to graciously share the article in Tex's link, I would be interested in your doctor's response. I bet you will, too ;)
Keep us posted,
Sara
My allergy tests were all "normal" as well. But yesterday I shipped my samples off to Enterolab, so we'll see what my actual intolerances are. Why are doctors so opinionated about MC when they know so little about it? (especially if they don't have it themselves!) Even other gluten sensitive people are opinionated: Yesterday in Meijer's I was browsing the GF section, and a lady asked if I was a celiac. I told her I'd just been diagnosed about a month ago. She invited me to a celiac group meeting. I mentioned the CC diagnosis, and she said, "Oh, then you're not celiac." 
Pat C.
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
Pat,
You raised some interesting points. I suspect that many doctors hide behind those opinions to cover up the fact that they know so little about the disease - it's a face-saving default response. Experts, especially, (such as GI specialists), don't like to admit to a patient that, "I don't know", because that doesn't sound very "expert".
I can't decide if celiacs developed that "holier-than-thou" attitude as a response to the GF dieting fad, or if they've always been that way. So many of them seem to wear their celiac diagnosis as a of "badge of honor", as if they belong to some sort of elitist club, (sort of a Mensa club for people with a celiac diagnosis ), and they look down their noses on anyone who doesn't have an official celiac diagnosis. I view those people as "celiac snobs", who simply don't understand the gluten sensitivity spectrum issue. They're a prime example of the old "a little education is sometimes a bad thing" concept. We really can't blame them, though, because celiac doctors seem to do everything they can to promote that misguided concept, so they're really the ones who deserve most of the blame.
Tex
You raised some interesting points. I suspect that many doctors hide behind those opinions to cover up the fact that they know so little about the disease - it's a face-saving default response. Experts, especially, (such as GI specialists), don't like to admit to a patient that, "I don't know", because that doesn't sound very "expert".
I can't decide if celiacs developed that "holier-than-thou" attitude as a response to the GF dieting fad, or if they've always been that way. So many of them seem to wear their celiac diagnosis as a of "badge of honor", as if they belong to some sort of elitist club, (sort of a Mensa club for people with a celiac diagnosis
), and they look down their noses on anyone who doesn't have an official celiac diagnosis. I view those people as "celiac snobs", who simply don't understand the gluten sensitivity spectrum issue. They're a prime example of the old "a little education is sometimes a bad thing" concept. We really can't blame them, though, because celiac doctors seem to do everything they can to promote that misguided concept, so they're really the ones who deserve most of the blame.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 was surprised by that 'celiac snobbery' - a fair number of us here, certainly including me, may well be undiagnosed celiacs. You, too, Pat - the stupidities of the way doctors diagnose celiac disease means that many, many suffer for years before they're finally ill enough to 'pass' the diagnostic criteria... I was totally amazed that I have a celiac gene (as well as another gluten-sensitivity gene in the same 'family'). So - do I have celiac disease? Do I feel like undergoing endoscopy to prove that to a doctor? Who cares?
I don't lie and say I have it, unless I'm asked flat-out by someone who's serving me in a restaurant (or similar circumstance, where "no-gluten-no-kidding" is my message. Then I say 'yes' - because if they know one thing about gluten and celiac, they know it's a big deal. If they think it's some preference of mine... ever order medium-rare and get well-done? That's how preferences go in restaurants! (Actually, that's why we're so happy in a restaurant when we get it like we like it - which is very often the case, and always a delight.)
I totally agree with Tex that the doctors are greatly to blame. (Actually, we might need a new emoticon for "I totally agree with Tex...") Maybe docs make the celiacs feel like they'e in a special/exclusive club to make up for having blown them off for a decade or so with an IBS diagnosis and anti-anxiety meds, while assuring them that diet had no bearing on their digestive agony.
I still want to know whether Dr. Fasano eats GF pasta ;)
I have a friend about to undergo surgery for diverticulitis. He's going GF preemptively, to minimize risk and maximize recovery. I hope (and he hopes most fervently) that this will be a temporary measure. But he recently watched someone go from young and healthy to sick-as-a-dog in very short order (you guessed it - gluten sensitive), and he knew me back when I pretty much lived on pasta. Good for him. (He's one of the few people whose health I care about where I'm not highly suspicious that gluten is an issue.)
Pat, if you didn't order the genetic test with your Enterolab kit, feel free to copy off my genes, should being 'officially' celiac ever be important to your health or happiness,
Sara
I don't lie and say I have it, unless I'm asked flat-out by someone who's serving me in a restaurant (or similar circumstance, where "no-gluten-no-kidding" is my message. Then I say 'yes' - because if they know one thing about gluten and celiac, they know it's a big deal. If they think it's some preference of mine... ever order medium-rare and get well-done? That's how preferences go in restaurants! (Actually, that's why we're so happy in a restaurant when we get it like we like it - which is very often the case, and always a delight.)
I totally agree with Tex that the doctors are greatly to blame. (Actually, we might need a new emoticon for "I totally agree with Tex...") Maybe docs make the celiacs feel like they'e in a special/exclusive club to make up for having blown them off for a decade or so with an IBS diagnosis and anti-anxiety meds, while assuring them that diet had no bearing on their digestive agony.
I still want to know whether Dr. Fasano eats GF pasta ;)
I have a friend about to undergo surgery for diverticulitis. He's going GF preemptively, to minimize risk and maximize recovery. I hope (and he hopes most fervently) that this will be a temporary measure. But he recently watched someone go from young and healthy to sick-as-a-dog in very short order (you guessed it - gluten sensitive), and he knew me back when I pretty much lived on pasta. Good for him. (He's one of the few people whose health I care about where I'm not highly suspicious that gluten is an issue.)
Pat, if you didn't order the genetic test with your Enterolab kit, feel free to copy off my genes, should being 'officially' celiac ever be important to your health or happiness,
Sara
Gabes,
You've just given me a million dollar idea.
Clearly, the doctors need to work out some sort of program with the big manufacturers of GF foods, whereby the manufacturers will send doctors who promote their GF products, on cruises to exotic islands for all-expense-paid vacations, (in the disguise of seminars, training camps, etc.), and also offer shorter educational programs held on local golf courses, at Las Vegas hotels, etc., so that the doctors won't feel that they are depriving themselves when they actually hand out some beneficial advice to people with food sensitivities.
This could revolutionize the medical industry, and turn it into something truly useful for shaping the health of future generations. Of course, the biggest obstacle is that the pharmaceutical companies obviously cannot allow this to happen, since it could be the start of a huge trend, so you can bet that they would figure out a way to nip it in the bud, before it ever got off the ground.
Since I don't have a few billion dollars to waste, trying to promote this idea, I guess I'll just have to chalk it up as one of those good ideas that never had a chance.
Tex
You've just given me a million dollar idea.
Clearly, the doctors need to work out some sort of program with the big manufacturers of GF foods, whereby the manufacturers will send doctors who promote their GF products, on cruises to exotic islands for all-expense-paid vacations, (in the disguise of seminars, training camps, etc.), and also offer shorter educational programs held on local golf courses, at Las Vegas hotels, etc., so that the doctors won't feel that they are depriving themselves when they actually hand out some beneficial advice to people with food sensitivities.This could revolutionize the medical industry, and turn it into something truly useful for shaping the health of future generations. Of course, the biggest obstacle is that the pharmaceutical companies obviously cannot allow this to happen, since it could be the start of a huge trend, so you can bet that they would figure out a way to nip it in the bud, before it ever got off the ground.
Since I don't have a few billion dollars to waste, trying to promote this idea, I guess I'll just have to chalk it up as one of those good ideas that never had a chance.
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.
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TooManyHats
- Rockhopper Penguin
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MaggieRedwings
- King Penguin
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Morning All,
Sara - I too have found the best way to address the gluten issue in a restaurant is to just say I am Celiac and then they get it. Most of the times otherwise they just listen with 1/2 an ear to what I say.
Tex - Great Idea.
Love, Maggie
Sara - I too have found the best way to address the gluten issue in a restaurant is to just say I am Celiac and then they get it. Most of the times otherwise they just listen with 1/2 an ear to what I say.
Tex - Great Idea.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Sara--
I did order the gene testing at Enterolab, but I may copy off your genes in the meantime! People do tend to understand the seriousness if you say "celiac".
Tex--
I love your idea! I worked for a dentist whose husband was a cardiologist, and I can attest to all the "perks" from drug companies. Amazing. If it has to do with $$$, you've got the doctors' attention!
You guys are all my new best friends. Thanks so much for being here!
I did order the gene testing at Enterolab, but I may copy off your genes in the meantime! People do tend to understand the seriousness if you say "celiac".
Tex--
I love your idea!
I worked for a dentist whose husband was a cardiologist, and I can attest to all the "perks" from drug companies. Amazing. If it has to do with $$$, you've got the doctors' attention!You guys are all my new best friends. Thanks so much for being here!
Pat C.
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
Well on my "To the Chef" card I say "I suffer from two diseases: Celiac and Microscopic Colitis". When people say what is Microscopic Colitis, I say "well its complicated, but it is bit like Celiac only its worse, with more food intolerance". That probably makes me an "MC snob".
I believe everything I say is true given symptoms and testing: D (especially if I get glutened), Enterolab results, Ataxia, Osteoporosis, history of reflux, TWO genes that make me susceptible to Gluten Intolerance AKA Celiac and, coup de grace the statistical links between MC and Celiac Dxs (especially refractory Celiacs, who most likely have MC and food intolerance beyond gluten)
Best, ant
I believe everything I say is true given symptoms and testing: D (especially if I get glutened), Enterolab results, Ataxia, Osteoporosis, history of reflux, TWO genes that make me susceptible to Gluten Intolerance AKA Celiac and, coup de grace the statistical links between MC and Celiac Dxs (especially refractory Celiacs, who most likely have MC and food intolerance beyond gluten)
Best, ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....