Seneca,
To the best of my knowledge, Dr. Chapman is qualified to treat conventional MC symptoms, but does not have the special training needed for treating mast cell issues, such as mast cell activation syndrome, or systemic mastocytosis. With only a handful of exceptions, scattered across the country, (most of whom have trained under Dr. Castells), Brigham and Women's Hospital pretty much has the market cornered on specialists qualified to treat patients with mast cell issues connected with anything more than simple, classic allergies.
The possibility exists, of course, that he may have very recently gone through such training, and we are simply not yet aware of that, but that's unlikely, because such training is still not widely available.
Tex
List Of Recommended Doctors
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Tex (and others),
You posted a reply to my questions in November, 2011. My teen daughter had been diagnosed with IBS. She has since had another colonoscopy and endoscopy and diagnosed as lactose intolerant through biopsies. She has changed her diet with reasonable success so far. I also stopped all lactose.
I was referred to a rheumatologist for my severe joint pain. She diagnosed me with inflammatory arthritis. She said it was most similar to psoriatic arthritis. She knows it was caused by the MC. After three NSAID trials (and other medicines three years ago), she placed me on Azathioprine about 2 weeks ago. It has helped my pain a lot and improved my MC but not resolved it although I am not happy about being on this medicine. I went to a new GI doctor last week, and he was a big improvement over my last one. He prefers that I use Budesonide and feels I have a decent chance of remission with medicine and being lactose free. While he says he has no proof that there is a connection between gluten and MC, he realizes that one day he may learn there is one. He is open to the conversation. He thought a major diet change was very difficult, and I should try the Budesonide first.
After lurking for months and having found no success so far, I am ready to have the Enterlab testing done. Which tests should I order? I haven't stated the new medicine yet. I can have the testing done first if medicine will interfere with the results. I am ready to do what I need to do to feel better. I have been too sick for way too long - at least 4 years. I am a vegetarian and strongly prefer to stay that way, so I realize this will be a very big challenge.
I really appreciate all of the information and support on this board!
Kathy
You posted a reply to my questions in November, 2011. My teen daughter had been diagnosed with IBS. She has since had another colonoscopy and endoscopy and diagnosed as lactose intolerant through biopsies. She has changed her diet with reasonable success so far. I also stopped all lactose.
I was referred to a rheumatologist for my severe joint pain. She diagnosed me with inflammatory arthritis. She said it was most similar to psoriatic arthritis. She knows it was caused by the MC. After three NSAID trials (and other medicines three years ago), she placed me on Azathioprine about 2 weeks ago. It has helped my pain a lot and improved my MC but not resolved it although I am not happy about being on this medicine. I went to a new GI doctor last week, and he was a big improvement over my last one. He prefers that I use Budesonide and feels I have a decent chance of remission with medicine and being lactose free. While he says he has no proof that there is a connection between gluten and MC, he realizes that one day he may learn there is one. He is open to the conversation. He thought a major diet change was very difficult, and I should try the Budesonide first.
After lurking for months and having found no success so far, I am ready to have the Enterlab testing done. Which tests should I order? I haven't stated the new medicine yet. I can have the testing done first if medicine will interfere with the results. I am ready to do what I need to do to feel better. I have been too sick for way too long - at least 4 years. I am a vegetarian and strongly prefer to stay that way, so I realize this will be a very big challenge.
I really appreciate all of the information and support on this board!
Kathy
Hi Kathy.
I'm sorry that you're having a difficult time reaching remission. Regarding the Enterolab tests, I prefer Panel "B" (which covers the most common food sensitivities), plus the gene test, if you can justify the extra $150 cost of the gene test. Panel "C" is worthwhile if you can swing the added cost.
Please be aware that approximately 1 in 300 people do not respond to the IgA tests used by EnteroLab because they do not produce normal amounts of immunoglobulin A. This condition is called "selective IgA deficiency", and there's a simple blood test that your doctor can use to rule it out, in case you're not sure whether or not you might have the condition. Unfortunately, for anyone with selective IgA deficiency, all their Enterolab test results will be negative, (or at least much lower than they should be), regardless of whether or not they have any food sensitivities. We have at least several members who have selective IgA deficiency.
If you plan to do the testing it's best to do the tests before you've been taking either a corticosteroid (such as budesonide) or an immune system suppressant (such as Azathioprine) for more than a few weeks, because they will eventually begin to reduce the reliability of the test results.
Tex
I'm sorry that you're having a difficult time reaching remission. Regarding the Enterolab tests, I prefer Panel "B" (which covers the most common food sensitivities), plus the gene test, if you can justify the extra $150 cost of the gene test. Panel "C" is worthwhile if you can swing the added cost.
Please be aware that approximately 1 in 300 people do not respond to the IgA tests used by EnteroLab because they do not produce normal amounts of immunoglobulin A. This condition is called "selective IgA deficiency", and there's a simple blood test that your doctor can use to rule it out, in case you're not sure whether or not you might have the condition. Unfortunately, for anyone with selective IgA deficiency, all their Enterolab test results will be negative, (or at least much lower than they should be), regardless of whether or not they have any food sensitivities. We have at least several members who have selective IgA deficiency.
If you plan to do the testing it's best to do the tests before you've been taking either a corticosteroid (such as budesonide) or an immune system suppressant (such as Azathioprine) for more than a few weeks, because they will eventually begin to reduce the reliability of the test 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.
Kathy,
That's a tough question, and the effect tends to vary by the individual, because immune systems are so unique. I know very little about the details of how Azathioprine actually works. If you call Enterolab they can probably give you some guidelines on how to handle your situation.
You're very welcome,
Tex
That's a tough question, and the effect tends to vary by the individual, because immune systems are so unique. I know very little about the details of how Azathioprine actually works. If you call Enterolab they can probably give you some guidelines on how to handle your situation.
You're very welcome,
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.
Can anyone direct me to an informed GI Specialist in the Knoxville or Chattanooga, Tn area. I just got told my pain was all in my head - pain that has lasted 7 months, with 40 lbs. shed without trying, fatigue, chronic diarrhea 4-12 times a day. I have had low blood pressure, been through tons of tests and no one wants to come out and say that "yes" you have Colitis except my PCP. I am 45, start college in less than a week and was hoping by now to have some answers. I have changed my diet drastically to stay away from trigger foods as well as those listed online and suggested by my PCP. I am at my wits end. It evens hurts to drive my vehicle over 20-30 miles. I waited 1 1/2 months to see the GI Specialist I saw on Monday only to be told "it's in my head". I have never been this sick before & am so frustrated and TIRED! PLEASE if anyone can help...Thank you
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Christine.
- Gentoo Penguin
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Doe
I'm sure you will get more specific advice than what I can give you but if you read the newbie advice here you will get some great tips for beginning your journey to feeling better. Have you had a colonoscopy? If so did they take multiple biopsies? Are you gluten free? If you have pain and D have you eliminated raw fruit, veggies and fiber? You might want to back off to chicken, homemade broth, well cooked veggies and rice or potatoes. Most of us are also dairy free and many are egg and soy free. This is not in your head! We have all been where you are.
Chris
I'm sure you will get more specific advice than what I can give you but if you read the newbie advice here you will get some great tips for beginning your journey to feeling better. Have you had a colonoscopy? If so did they take multiple biopsies? Are you gluten free? If you have pain and D have you eliminated raw fruit, veggies and fiber? You might want to back off to chicken, homemade broth, well cooked veggies and rice or potatoes. Most of us are also dairy free and many are egg and soy free. This is not in your head! We have all been where you are.
Chris
Hi Doe,
Welcome to the board. Yes, you're right, it's time to move on from that loser and find a more knowledgeable doctor. When doctors feel lost, and can't figure out how to help a patient, some of them become frustrated and blame the patient in order to cover their own insecurity and lack of knowledge.
The only MD we have listed in Tennessee who we know for a fact is up to speed on this disease is:
Dr. Jeffrey Fenyves
Center for Digestive Wellness
10461 Wallace Alley Drive
Kingsport TN 37663
(423)279-1400
http://www.digestivewellness.net/pages/us_phys_prov.htm
The closest choices otherwise would be in Columbus, Ohio, Maryland, or Florida.
FWIW, I felt exactly the way that you are feeling back when my symptoms first got out of hand, and my GI doc was no better than yours. Fortunately, I discovered the diet connection and was able to take care of the problem myself.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. Yes, you're right, it's time to move on from that loser and find a more knowledgeable doctor. When doctors feel lost, and can't figure out how to help a patient, some of them become frustrated and blame the patient in order to cover their own insecurity and lack of knowledge.
The only MD we have listed in Tennessee who we know for a fact is up to speed on this disease is:
Dr. Jeffrey Fenyves
Center for Digestive Wellness
10461 Wallace Alley Drive
Kingsport TN 37663
(423)279-1400
http://www.digestivewellness.net/pages/us_phys_prov.htm
The closest choices otherwise would be in Columbus, Ohio, Maryland, or Florida.
FWIW, I felt exactly the way that you are feeling back when my symptoms first got out of hand, and my GI doc was no better than yours. Fortunately, I discovered the diet connection and was able to take care of the problem myself.
Again, welcome aboard, and please feel free to ask anything.
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.
Thank you for the information! I feel much better just knowing I am not alone. Am trying pure Aloe. Not too sure about it yet (only been 3 days). Yes, I have changed my diet drastically, but I have no appetite so I have to make myself eat. Start college tomorrow for first time at 45! Will not let this illness stop me from following my dreams. Thanks to all who post here!
Dear Doe,
Welcome from Hong Kong and good luck with College tomorrow!
Apart from the care and emotional support, if you have an inquiring mind you will love this board. I have learned so much by reading here.
Best wishes on your journey to recovery, Ant
Welcome from Hong Kong and good luck with College tomorrow!
Apart from the care and emotional support, if you have an inquiring mind you will love this board. I have learned so much by reading here.
Best wishes on your journey to recovery, Ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Hi,
Most GI specialists are finally learning how to diagnose the disease, but the ability to actually treat the disease in order to help the patient achieve and maintain long-term remission is what separates the real (MC-qualified) GI docs from the also rans. Does Dr. Knutson recommend or at least recognize the value of cutting food sensitivities such as gluten, casein, soy, etc. out of the diet when treating this disease? That's essential for long-term remission, unless the patient is willing to take powerful drugs for the rest of her or his life. The only exception is drug-induced LC which can be treated simply by discontinuing the drug that triggers the disease and avoiding it (and similar drugs) for life.
Thanks,
Tex
Most GI specialists are finally learning how to diagnose the disease, but the ability to actually treat the disease in order to help the patient achieve and maintain long-term remission is what separates the real (MC-qualified) GI docs from the also rans. Does Dr. Knutson recommend or at least recognize the value of cutting food sensitivities such as gluten, casein, soy, etc. out of the diet when treating this disease? That's essential for long-term remission, unless the patient is willing to take powerful drugs for the rest of her or his life. The only exception is drug-induced LC which can be treated simply by discontinuing the drug that triggers the disease and avoiding it (and similar drugs) for life.
Thanks,
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.
Portland, Oregon
I guess I hadn't seen this before, but for anyone in this area, I would highly recommend my doctor, Noel Peterson, as a wonderful resource for regaining your health. The joint damage done by a lifetime of gluten intolerance isn't reversible, but it can be stopped and can be mended by prolotherapy. I am 63 and have a very demanding and physical job as a caterer. I routinely have to lift 90 lb. coolers from my van. 6 years ago I thought my life/career was over. I was wrong. I can still lift those 90 lb. coolers. Dr. Peterson got me to go GF 4 months before I was dx/w/MC, he worked with me and helped me to successfully find a way to treat it without drugs. He's a true healer.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.