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Hi all,
Well, I went to see Dr. Scot Lewey, the Food Doc (www.thefooddoc.com), today. He is a good doctor. He is rather quiet and not as forthcoming with information as I expected from his blog, but I did learn a few things:
1) The main thing I discovered is that he recommends almost exactly what this group does. Treatment of MC with GF/DF diet, MRT and LEAP, restaining of biopsies for mast cell tryptase, genetic testing for HLA-DQ2 and DQ8, testing for IgA levels, and more.
2) I mentioned that my previous GI had thought I had IBS until the results of the biopsy came in. Dr. Lewey's first question was, "Did you have nighttime diarrhea?" When I answered that I had, he said, "Well, then it couldn't have been IBS. IBS doesn't wake people up in the night." So there you have it - nighttime D is a sure indicator of something more than "IBS".
3) He wanted to see my lab results, particularly whether I had ever been tested for celiac. I had the results of my tissue transglutaminase testing from December of 2010 (before I went GF). He looked at them, then asked, "But didn't he do an IgA screen?" Of course, he didn't. Dr. Lewey's response: "Well, then it's no good. The test is no good unless we know your IgA level is normal." So there's another one - all those celiac tests that come back negative? No good, because they depend on a normal IgA level. And how many of our GI's are doing an IgA screen along with the tissue transglutaminase?
Other than that, here's what he recommended for me. (Background: I've had chronic D at least 10 years. I've been GF since Thanksgiving, DF since Christmas, diagnosed with MC end of January - when I discovered this group, SF and EF since end of February. Salicylates make my ears ring, so I can't take Pepto, Asacol, etc.)
1) Get genetic testing HLA DQ2 and DQ8.
2) See if they will re-stain my biopsy for mast cells.
3) Have an upper endoscopy for the stomach pain that developed a few weeks after my diagnosis.
4) Continue my GF etc.diet.
5) Try taking VSL#3 probiotic powder. Most probiotics contain things we are sensitive to; VSL#3 in powder form doesn't. Every other kind I've tried have made me worse. If this doesn't work, I don't know if I'll try again, but I'm willing to try it because Dr. Lewey has such a good reputation.
6) Get MRT testing. Insurance doesn't cover it, but he gave me the info to get it done and said it would be $295.
7) Begin taking the Entocort my previous doctor prescribed, but I haven't started taking because I wanted to be able to tell what I was sensitive to.
I do have a few questions:
a) Will the Entocort affect results of my upper endoscopy? I'm thinking at the moment that I won't bother starting it until after the procedure.
b) I know Entocort affects Enterolab testing. Does anyone know if it affects MRT testing?
c) Has anyone tried taking VSL#3? If so, what have been your results?
d) Other thoughts about this visit?
Overall I feel pretty good about it - and even better about this group, since you are saying pretty much exactly the things he did. You guys are awesome! Thank you for all the help you give to all us newbies here, including the list of doctors who are treating this correctly.
Deanna in CO
Dr. Lewey Appointment Today
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Deanna in CO
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- Location: Colorado
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Deanna,
Thanks for the update from you visit. I live in Littleton (SW of Denver), so if I ever need a GI, Dr. Lewey it is. I'm curious about where in CO you live?
If you have the patience for it, and your symptoms are not unbearable, I would continue to put off taking entocort. The MRT results will give you a great starting point to get your diet to work in your favor. There are many people here, including myself, who are managing their MC with diet alone (often with the help of imodium). From what I understand by reading lots here, Entocort helps with symptom relief, but can mask underlying food sensitivities, which is where the real issue is.
Like you, I also had D. for 10 years before finding out about the diet angle and going GF, and subsequently "everything else" free. I did the MRT testing and found it to be very useful. I was doing a lot better for a while, but now I'm struggling with histamine/mast cell issues. However, I'm still feeling much, much better than before I started the diet.
I have never been able to find a probiotic that I can tolerate, so I'm curious to hear about how you react to VSL#3.
Best of luck to you as you continue on your MC journey - I look forward to follow along through your posts here.
Love,
Kari
Thanks for the update from you visit. I live in Littleton (SW of Denver), so if I ever need a GI, Dr. Lewey it is. I'm curious about where in CO you live?
If you have the patience for it, and your symptoms are not unbearable, I would continue to put off taking entocort. The MRT results will give you a great starting point to get your diet to work in your favor. There are many people here, including myself, who are managing their MC with diet alone (often with the help of imodium). From what I understand by reading lots here, Entocort helps with symptom relief, but can mask underlying food sensitivities, which is where the real issue is.
Like you, I also had D. for 10 years before finding out about the diet angle and going GF, and subsequently "everything else" free. I did the MRT testing and found it to be very useful. I was doing a lot better for a while, but now I'm struggling with histamine/mast cell issues. However, I'm still feeling much, much better than before I started the diet.
I have never been able to find a probiotic that I can tolerate, so I'm curious to hear about how you react to VSL#3.
Best of luck to you as you continue on your MC journey - I look forward to follow along through your posts here.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
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Deanna in CO
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Kari,
I discovered today when I went to get the VSL that it is quite expensive - $98 for a one-month supply. (Not as bad as Entocort, but still quite a bit especially since I haven't found a probiotic yet that I can tolerate.). So I put it off until I could do a bit more research on it, and I'm glad I did. I went back to Dr. Lewey's website and discovered that a) the flavored version contains maltose from barley; b) the unflavored version is GF but contains cornstarch, which an old skin test showed I'm sensitive to; c) the prescription version is GF but not on Insider's formulary and I don't even want to think about how much it costs; d) the capsule version contains gluten also; and e) to top it all off, all of them contain dairy, and Dr. Lewey on his blog said he didn't recommend them for his dairy-sensitive patients (not sure how he missed that since he specifically asked me about it, but everybody has their off days, right?
Anyway, that pretty much rules out VSL#3 for me. His blog (this was from a few years ago) also recommended Flora Q, and that one is GF/DF/EF/SF, etc, so I'm thinking I will try that as a sort of last resort - all the research I've read including Dr. Lewey's blog, and my nutritionist, seem clear that if we can find something we can tolerate, it should improve our healing process. I'm hoping maybe the reason I've had trouble with other probiotics has been my food sensitivities, which seem especially bad when drugs and supplements are involved. I'm a bit skeptical, but we'll see.
I definitely recommend Dr. Lewey. I mentioned that there are people all over the country who would love to get to see him, and he seemed genuinely sorry to have had to limit his practice. I think he realizes how rare he is, and how badly people need a smart, sensible GI like him. He just doesn't want people having to wait two months or more to get in to see him (I got an appointment in about a month).
Meanwhile I am trying to get my primary care doc to order the tests I need and to refer me to him for the endoscopy. I had a good visit with her about a month ago. She seems much more sensible than my GI was, and I think she is a lot more likely to order this stuff than he would have been. One of the things that needs to be ordered is a restaining of my biopsy for mast cells; we'll see whether I will then join you in dealing with the histamine/mast cell issues as well.
Thanks for the feedback!
Deanna
I discovered today when I went to get the VSL that it is quite expensive - $98 for a one-month supply. (Not as bad as Entocort, but still quite a bit especially since I haven't found a probiotic yet that I can tolerate.). So I put it off until I could do a bit more research on it, and I'm glad I did. I went back to Dr. Lewey's website and discovered that a) the flavored version contains maltose from barley; b) the unflavored version is GF but contains cornstarch, which an old skin test showed I'm sensitive to; c) the prescription version is GF but not on Insider's formulary and I don't even want to think about how much it costs; d) the capsule version contains gluten also; and e) to top it all off, all of them contain dairy, and Dr. Lewey on his blog said he didn't recommend them for his dairy-sensitive patients (not sure how he missed that since he specifically asked me about it, but everybody has their off days, right?
Anyway, that pretty much rules out VSL#3 for me. His blog (this was from a few years ago) also recommended Flora Q, and that one is GF/DF/EF/SF, etc, so I'm thinking I will try that as a sort of last resort - all the research I've read including Dr. Lewey's blog, and my nutritionist, seem clear that if we can find something we can tolerate, it should improve our healing process. I'm hoping maybe the reason I've had trouble with other probiotics has been my food sensitivities, which seem especially bad when drugs and supplements are involved. I'm a bit skeptical, but we'll see.
I definitely recommend Dr. Lewey. I mentioned that there are people all over the country who would love to get to see him, and he seemed genuinely sorry to have had to limit his practice. I think he realizes how rare he is, and how badly people need a smart, sensible GI like him. He just doesn't want people having to wait two months or more to get in to see him (I got an appointment in about a month).
Meanwhile I am trying to get my primary care doc to order the tests I need and to refer me to him for the endoscopy. I had a good visit with her about a month ago. She seems much more sensible than my GI was, and I think she is a lot more likely to order this stuff than he would have been. One of the things that needs to be ordered is a restaining of my biopsy for mast cells; we'll see whether I will then join you in dealing with the histamine/mast cell issues as well.
Thanks for the feedback!
Deanna
Hi Deanna,
Sounds like a great visit! I was another MC er who could not tolerate probiotics during flare and had serious reactions to them. Now that I'm further along in healing I'm ok with culturelle but for a really long pretty much any probiotic was problematic.
I'm impressed that Dr. Lewey disclosed that getting off of Entocort can be problematic. Certainly my GI never disclosed the fact.
Glad your visit went well, Brandy
Sounds like a great visit! I was another MC er who could not tolerate probiotics during flare and had serious reactions to them. Now that I'm further along in healing I'm ok with culturelle but for a really long pretty much any probiotic was problematic.
I'm impressed that Dr. Lewey disclosed that getting off of Entocort can be problematic. Certainly my GI never disclosed the fact.
Glad your visit went well, Brandy
L-Glutimine
Hi Deanna. Did he mention l-glutamine at all? It's pretty inexpensive and I know that some people on this forum have gotten into remission using it. The powdered form is best and it comes pure ( nothing else in it). It is usually taken by body builders for muscle tissue repair, but it has been shown to help repair the intestinal walls. I just bought some to mix in with my "green" drink.
Good to know about LC vs. CC with the Entocort. I have stepped down from three pills to two, but I had to do it very gradually ( I have CC).
Thanks for sharing your visit. Sounds like you have a good place to start.
Leah
Good to know about LC vs. CC with the Entocort. I have stepped down from three pills to two, but I had to do it very gradually ( I have CC).
Thanks for sharing your visit. Sounds like you have a good place to start.
Leah
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Deanna in CO
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Leah,
He didn't mention L-Glutamine but it's on the list of supplements I'm taking (which I gave him). Given how quiet e was, he probably wouldn't have mentioned something I was taking that he thought I should be taking, if you know what I mean.
I am taking the tablet form rather than the powder - at my nutritionist's recommendation, I'm taking a number of GF/DF/SF/EF supplements (iodine, B vitamins, vitamin C, vitamin D, cal-mag-zinc, selenium, and betaine HCL - this last for stomach pain) along with the L-Glutamine, so trying to keep down the cost and make taking things as easy as possible. If I don't get real help from the MRT, I may try going off everything and doing the chicken-rice thing.
I thought when I heard it that the LC/CC and Entocort might be helpful to someone here. (Thought of you folks with CC as soon as he said it!)
I also thought the "IBS doesn't cause nighttime D" and the bit about the celiac blood test being useless without the serum IgA level might be helpful. I think many of us know the Enterolab testing doesn't work if serum IgA levels are low, but it never occurred to me that the celiac test is also based on IgA level and will give a false negative if that level is low. I'm asking my PCP to do a serum IgA before I spend the $$ on MRT as well.
Sorry I couldn't be more help on the L-Glutamine. My nutritionist is sold on it, but I didn't have the chance to discuss it with Dr. Lewey in the limited time frame we had (wish I'd had an hour with him - he was almost as good as Tex here, though not quite as forthcoming with information!). :-)
Deanna
He didn't mention L-Glutamine but it's on the list of supplements I'm taking (which I gave him). Given how quiet e was, he probably wouldn't have mentioned something I was taking that he thought I should be taking, if you know what I mean.
I am taking the tablet form rather than the powder - at my nutritionist's recommendation, I'm taking a number of GF/DF/SF/EF supplements (iodine, B vitamins, vitamin C, vitamin D, cal-mag-zinc, selenium, and betaine HCL - this last for stomach pain) along with the L-Glutamine, so trying to keep down the cost and make taking things as easy as possible. If I don't get real help from the MRT, I may try going off everything and doing the chicken-rice thing.
I thought when I heard it that the LC/CC and Entocort might be helpful to someone here. (Thought of you folks with CC as soon as he said it!)
I also thought the "IBS doesn't cause nighttime D" and the bit about the celiac blood test being useless without the serum IgA level might be helpful. I think many of us know the Enterolab testing doesn't work if serum IgA levels are low, but it never occurred to me that the celiac test is also based on IgA level and will give a false negative if that level is low. I'm asking my PCP to do a serum IgA before I spend the $$ on MRT as well.
Sorry I couldn't be more help on the L-Glutamine. My nutritionist is sold on it, but I didn't have the chance to discuss it with Dr. Lewey in the limited time frame we had (wish I'd had an hour with him - he was almost as good as Tex here, though not quite as forthcoming with information!). :-)
Deanna
Actually, the celiac blood test is based on a combination of IgA and IgG antibodies, but it's certainly possible that selective IgA deficiency could still cause a false negative result, especially since that test is notorious for false negative results, anyway.
Selective IgA deficiency should be irrelevant for MRT results, (IOW, it shouldn't matter if you aren't capable of producing normal amounts of IgA), because apparently they don't test for immunoglobulin antibodies of any type. The test results are based on indirect measurements if the effects of the release of inflammatory mediators, (by mast cells), so Immunoglobulin antibodies aren't a significant factor.
Tex
Selective IgA deficiency should be irrelevant for MRT results, (IOW, it shouldn't matter if you aren't capable of producing normal amounts of IgA), because apparently they don't test for immunoglobulin antibodies of any type. The test results are based on indirect measurements if the effects of the release of inflammatory mediators, (by mast cells), so Immunoglobulin antibodies aren't a significant factor.
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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Deanna in CO
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Tex, do you know if taking Entocort would affect the MRT? Dr. Lewey though I should go ahead and take that since I already have it in hand. I was also wondering if Entocort would affect the endoscopy. I'd rather wait to start it until after these things are done if it's going to have any significant effect.
Deanna,
I can't say that it will have absolutely no effect, but IMO, the effect should be minor enough to be negligible, for all practical purposes, at least for a month or so. Research has shown that corticosteroids require several months of regular use, before they have a significant effect on the numbers of mast cells in the subepithelia of air passageways, and so that would probably apply to mast cell numbers in the epithelia of the intestines, as well. I wouldn't wait more than a couple of months after starting the Entocort, before doing the testing, though, because the effect may eventually become significant enough to skew the results.
Tex
I can't say that it will have absolutely no effect, but IMO, the effect should be minor enough to be negligible, for all practical purposes, at least for a month or so. Research has shown that corticosteroids require several months of regular use, before they have a significant effect on the numbers of mast cells in the subepithelia of air passageways, and so that would probably apply to mast cell numbers in the epithelia of the intestines, as well. I wouldn't wait more than a couple of months after starting the Entocort, before doing the testing, though, because the effect may eventually become significant enough to skew the results.
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.
This is probably total coincidence, but I finally started taking my powdered L-Glutamine this week, and within 2 days, I had perfect normans, which I haven't seen despite being in "remission" from most of the other MC symptoms. It's as if my body was starving for it? I haven't taken my Culturelle in weeks and I've been sporadic with my other supplements. What's weird is this was during my organization's annual meeting, my most stressful time of the year!