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Too Many Doctors!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Too Many Doctors!
How many here are sick of going to too many doctors? Well, I am! My head and notebooks are full of conflicting advice and I am going crazy trying to remember which facts are true, false, or misguided. Since being diagnosed with LC, I just want to wipe the slate clean and start over! In the past three months, I've been on so many different kinds of vitamins, food recommendations and the like doctors have recommended, that I don't know now which to take or believe. Certain food and pills for hormones, certain food and pills for gallbladder, certain foods and pills for....well, you get the picture! So......if you were me and wanted to start anew, and tackle LC head on, what would you do? I'm not sure about the accuracy of my blood tests; results said I was allergy free, food free, etc. So, I am thinking of taking the Enterolab tests. (I am not sure I have the know how to figure out the elimination diet - it seems like such a long process of trial and error.) Wouldn't it make sense to take the tests and figure out what I need to eliminate right from the beginning?
Most of us can identify with your frustrating experiences with GI specialists, because most of them really don't have the foggiest idea how to properly treat this disease. Some of them are learning as they go, but many of them still have a long, long way to go, and in the meantime, their patients pay the price in frustration, and suffering. The best doctors are usually the ones that will admit right up front that they don't know much about the disease, but they're willing to learn with their patients - at least they have an open mind, so they have a chance of actually learning from their patients' experiences. Those who pretend to know it all, and ignore their patient's input, are usually not very helpful for treating this disease, because what they learned in med school will not prepare them for treating MC.
Many/most of us find that we're ahead of the game if we simply stop taking all meds, (except for some that might be essential for life-threatening issues), and all vitamins and herbal supplements, etc., and concentrate on fine-tuning our diet until we can get our digestive system back to functioning properly, again. Most anti-depressants, for example, can't be stopped cold turkey, so that will have to be addressed separately, especially since SSRIs tend to cause MC for many people. NSAIDs and PPIs are probably the worst, as far as drug-induced cases of MC are concerned.
If symptoms are severe, Entocort can help to stop the D sooner, so that quality of life is better, while the diet changes promote healing, but it's possible that Entocort may slow down the healing process, to some extent. Once we get control of our symptoms, then it's much easier to figure out which additional foods, and which supplements might be beneficial for us. As long as everything goes straight into the toilet a few hours after it's ingested, we're not getting much out of it, anyway.
Yes, the Enterolab tests can save a lot of recovery time, and a lot of worry, because they can usually remove any doubt about most of the major potential food-sensitivities. The gene test is not essential, but in many cases, the results can indicate the risks of having many additional food sensitivities, and as a result, it can provide a basis for deciding whether additional tests, (such as MRT), might also be beneficial. For example, those of us with double DQ genes, (especially double DQ1 genes), tend to have many food-sensitivities, and a more difficult time achieving remission, and in those cases, the MRT/LEAP program can greatly simplify the task of tracking down those additional food-sensitivities. Also, the presence of a celiac gene would define a risk of developing celiac disease, (even in cases where gluten-sensitivity is not currently a problem). Of course, celiac disease confirmation is kind of a moot point for those of us who are gluten-sensitive, because the treatment is the same, regardless of the type of gluten-sensitivity.
Tex
Many/most of us find that we're ahead of the game if we simply stop taking all meds, (except for some that might be essential for life-threatening issues), and all vitamins and herbal supplements, etc., and concentrate on fine-tuning our diet until we can get our digestive system back to functioning properly, again. Most anti-depressants, for example, can't be stopped cold turkey, so that will have to be addressed separately, especially since SSRIs tend to cause MC for many people. NSAIDs and PPIs are probably the worst, as far as drug-induced cases of MC are concerned.
If symptoms are severe, Entocort can help to stop the D sooner, so that quality of life is better, while the diet changes promote healing, but it's possible that Entocort may slow down the healing process, to some extent. Once we get control of our symptoms, then it's much easier to figure out which additional foods, and which supplements might be beneficial for us. As long as everything goes straight into the toilet a few hours after it's ingested, we're not getting much out of it, anyway.
Yes, the Enterolab tests can save a lot of recovery time, and a lot of worry, because they can usually remove any doubt about most of the major potential food-sensitivities. The gene test is not essential, but in many cases, the results can indicate the risks of having many additional food sensitivities, and as a result, it can provide a basis for deciding whether additional tests, (such as MRT), might also be beneficial. For example, those of us with double DQ genes, (especially double DQ1 genes), tend to have many food-sensitivities, and a more difficult time achieving remission, and in those cases, the MRT/LEAP program can greatly simplify the task of tracking down those additional food-sensitivities. Also, the presence of a celiac gene would define a risk of developing celiac disease, (even in cases where gluten-sensitivity is not currently a problem). Of course, celiac disease confirmation is kind of a moot point for those of us who are gluten-sensitive, because the treatment is the same, regardless of the type of gluten-sensitivity.
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.
Tex, I am confused. You state the gene test can indicate the risks of having many additional food sensitivities. Risks? Does the gene test "confirm" these additional food sensitivities? Or just states that you "might" have them? You said the gene test can provide a basis for deciding additional testing. How do you decide that? Based on the number of food sensitivities the gene test reveals? And where do you get/find a MRT/LEAP program?
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Joefnh
- Rockhopper Penguin
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Hi desertrat, this can be more than frustrating trying to figure out the health puzzle. Tex is quite correct a lot of GIs do not know how deal with MC yet. Hopefully this will change as time goes forward but for now it's up to us patients to find out what works and what does not. If you are lucky you will be able to find a GI doc that will listen to you and learn from your experiences.
I have found that advice from this site to invaluable and way ahead of the curve in what the medical community currently understands MC to be and how our diets affect the course of this disease. I was fortunate to find this site and the amazing people here within just a few weeks of diagnosis and was able to adapt my diet early on while learning how to cook at the same time.
I think the best approach is to simplify your diet to what seems to be a good starting place eating totally GF,SF and DF then with the help of testing you should be able to fine tune what foods you tolerate best and get your life back.
When this disease hit I was certain my life was over and that I would not be able to pursue my goals and maintain my work schedule. After about 18 months with the advice from this site and the support of an understanding GI doc, I am able to maintain a full time work schedule and now am even planning another trip to Australia in the not too distant future.
Best wishes desertrat
Joe
I have found that advice from this site to invaluable and way ahead of the curve in what the medical community currently understands MC to be and how our diets affect the course of this disease. I was fortunate to find this site and the amazing people here within just a few weeks of diagnosis and was able to adapt my diet early on while learning how to cook at the same time.
I think the best approach is to simplify your diet to what seems to be a good starting place eating totally GF,SF and DF then with the help of testing you should be able to fine tune what foods you tolerate best and get your life back.
When this disease hit I was certain my life was over and that I would not be able to pursue my goals and maintain my work schedule. After about 18 months with the advice from this site and the support of an understanding GI doc, I am able to maintain a full time work schedule and now am even planning another trip to Australia in the not too distant future.
Best wishes desertrat
Joe
Joe
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Mandy I did a combination of the elimination diet and MRT testing. The elimination diet quickly confirmed a sensitivity to gluten soy and dairy. The MRT testing helped refine my diet further. Testing by Enterolab or MRT can certainly speed up the initial process. Right after diagnosis (CC and Crohns) I did take entocort for about 7 months and then switched over to Imuran for long term non-steroidal treatment. The meds coupled with a GF SF DF diet (and some PP member cooking lessons) has kept things pretty well under control.
Joe
Joe
Joe
No, none of that information comes with the test results. I apologize for not clarifying that when I posted it. The implications of the gene test results are something that we have learned to interpret, based on the accumulated experiences of members here, who have had these tests in the past. We keep a list of test results, for comparison. Researchers such as Dr. Fine have pointed out that double DQ genes carry a heightened risk of developing certain issues, (for example, double DQ2 genes ordouble DQ8 genes suggest an increased probability of developing celiac disease). By comparing notes with our own tabulated results, we find that members with double DQ1 genes, for example, seem to be most prone to having numerous food-sensitivities, and often a much more difficult time achieving remission, (more persistent symptoms, and possibility a lower reaction threshold to tiny amounts of allergens). This hasn't been proven by any rigid scientific standards, by any means, it's just our observations, based on the data that we have accumulated here on the board. You can find our Enterolab test results here.Mandy wrote:Does the gene test "confirm" these additional food sensitivities? Or just states that you "might" have them? You said the gene test can provide a basis for deciding additional testing. How do you decide that? Based on the number of food sensitivities the gene test reveals? And where do you get/find a MRT/LEAP program?
Here are some discussions about MRT:
If you are interested in considering it, Mary Beth can recommend a dietitian in your area who is trained and certified for assisting with working out the diet requirements during the food-trial part of the program.
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.
we find that members with double DQ1 genes, for example, seem to be most prone to having numerous food-sensitivities, and often a much more difficult time achieving remission, (more persistent symptoms, and possibility a lower reaction threshold to tiny amounts of allergens)
to be more specific, double DQ1 or double DQ3 genes (I am one with multiple food sensitivities and double DQ3 genes).
From the enterolab site:
My and other published research has shown that DQ1 and DQ3 also predispose to gluten sensitivity, and certain gluten-related diseases (microscopic colitis for DQ1,3 in my research and gluten ataxia for DQ1 by another researcher). And according to my more recent research, when DQ1,1 or DQ3,3 are present together, the reactions are even stronger than having one of these genes alone (like DQ2,2, DQ2,8, or DQ8,8 can portend a more severe form of celiac disease).
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
and on the doctors issue, well I don't have that problem since I only have two doctors a PCP and a GI. But I do understand the confusing, before and just after being diagnosed I spent a lot of time on line, to find information on CC, on IBD and food, alternative methods, and the more I read about it, the more I get lost, one says eat meat, the other says meat is bad, one says drink milk, the other one says is bad, eat three meals a day versus spread the food over the day and eat every hour. And of course those sites with whole theory and the solution they sell on line (always overpriced vitamin and other pills).
that is why I am so happy with this group.
Also when it comes to food and MC, my favorite still is Loren Cordain on Paleo diet, for me that was the only book that really made sense, at least to me.
that is why I am so happy with this group.
Also when it comes to food and MC, my favorite still is Loren Cordain on Paleo diet, for me that was the only book that really made sense, at least to me.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
You have to have a blood sample drawn at a lab, (or a doctor's office), and they have to send the sample to the MRT lab for testing. Yes, you can order the test yourself, for $495, but if you order it through one of their certified dietitians, the dietitian gets a discount, so that the combination of the test and the dietician's services usually does not cost much more than the test itself, and having a dietitian who understands how the program works, can save a lot of time and effort. I don't recall anyone here specifically, who had any luck getting their insurance to pay for it, but I believe there are a few who have had their test paid by their insurance company. This is relatively new technology, and most MDs are going to claim that this technology is fake, (in fact, you can find the opinion of one of them on Quackwatch), but many, many clients have found the results to be very helpful, (including many of our members here, one of whom is an MD herself, and who highly recommends the test, based on her excellent results). She was able to track down totally unexpected foods that had been bothering her for 10 years or more, and eliminating them from her diet brought instant benefits.Mandy wrote:Questions: where can I get a MRT test? Does it have to be with a dietician? Can any medical doctor order it and does insurance pay for it?
I would assume that if the test were ordered by one of their affiliated healthcare providers, the odds of getting insurance coverage might be improved, but I'm sure it will depend on your particular insurance company. Many are slow to embrace new technology, and this test/program is not widely accepted by most MDs, (naturally, since most of them don't realize that what we eat has anything to do with digestive system diseases. Duh!).
The mediator release test will show which foods are most reactive for you, which are intermediate, and which are the least reactive. Sorting them out requires trial and error testing by the patient, (starting with an elimination diet) - that's why the help of a knowledgeable dietitian can be very beneficial, in order to establish an orderly, efficient, and definitive way to do the testing.
http://www.nowleap.com/index.html
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.