My doctor provided me with a letter to take to the airlines for my trip with NO argument. I wonder if she is coming around a bit?
Question - if NOTHING I eat seems to cause me to have D (always excluding G and S) should I eat everything? Or will it be like your dairy response, Tex? Do I still have to stay away from so many foods? How can I tell if I am still actively sensitive to something while it shows as dormant, or I HAVE healed enough to eat it (thinking of chicken - yum! And rice, and maybe corn)
I wish I could get a new EnteroLab test via Kaiser!
Apropos Kaiser - I was visited by a broker last week to discuss changing my plan. After going through them all his advice was to stay with Kaiser. He says Kaiser is light years ahead of any of the other plans in terms of technology, research and the recruiting of doctors. He told me a lot about each of the other plans. He says, given my diagnoses, that I would have to invest a lot of time in finding new docs, go through more tests, know that they will be geographically further away, and so forth.
BTW - Kaiser is the only plan that has 4 star status, meaning I could switch back during the year, and would not have to wait for the end of next year.
Since my trip is so close I decided to wait. What I want to do is ask my GI if he will talk to CO doc (name escapes me - help?) and get his opinion on EnteroLab. Maybe, once he does, he will be more willing to give me a referral.
Thoughts?
One good thing, and another question...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Lesley,
My take on food sensitivities is that if we produce antibodies, then we are reacting to that food, whether we have clinical symptoms or not. This is analogous to celiacs who are asymptomatic, even though they show the diagnostic markers of celiac disease. Researchers claim that untreated asymptomatic celiacs have no higher risk of developing non-Hodgkins lymphoma than treated celiacs, so based on that particular health risk, you could make a case for eating whatever you want, as long as it doesn't cause symptoms. The problem with this approach is that it allows the internal damage to continue to accrue.
Dr. Scot Lewey is Colorado is known as "The Food Doc".
Tex
My take on food sensitivities is that if we produce antibodies, then we are reacting to that food, whether we have clinical symptoms or not. This is analogous to celiacs who are asymptomatic, even though they show the diagnostic markers of celiac disease. Researchers claim that untreated asymptomatic celiacs have no higher risk of developing non-Hodgkins lymphoma than treated celiacs, so based on that particular health risk, you could make a case for eating whatever you want, as long as it doesn't cause symptoms. The problem with this approach is that it allows the internal damage to continue to accrue.
Dr. Scot Lewey is Colorado is known as "The Food Doc".
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.
Leah,
Basically that's what I have been doing. The only dairy if have had is a square of milk chocolate.
And my consumption of those foods has been sort of "once in a great while".
None of them have caused D. However, I am unsure, given my C dominated MC I really don;t know if any of them makes it worse. With D dominated eat something and get D. With C dominated who knows? I have no sign like D.
Also, as Tex says "that if we produce antibodies, then we are reacting to that food, whether we have clinical symptoms or not. "
If that is the case am I causing damage rather than healing?
Brenda - what meds does your mother use?
Basically that's what I have been doing. The only dairy if have had is a square of milk chocolate.
And my consumption of those foods has been sort of "once in a great while".
None of them have caused D. However, I am unsure, given my C dominated MC I really don;t know if any of them makes it worse. With D dominated eat something and get D. With C dominated who knows? I have no sign like D.
Also, as Tex says "that if we produce antibodies, then we are reacting to that food, whether we have clinical symptoms or not. "
If that is the case am I causing damage rather than healing?
Brenda - what meds does your mother use?
I would consider the results of the individual EnteroLab tests to be gospel, and view the test results of the "11 other allergenic foods" as guidelines (just as Dr. Fine suggests), but not chiseled in stone.Lesley wrote:So how do I ever know if I can add foods in?
That's really an unknown, because we know from research that untreated celiacs who are asymptomatic don't necessarily always accrue damage. Some of them show antibodies in their blood, for example, but their small intestinal biopsy results remain negative. Research shows that some celiacs develop small intestinal damage at first, but as they continue to eat gluten, the damage disappears, as they develop a tolerance.Lesley wrote:If that is the case am I causing damage rather than healing?
I can't help but wonder if your chronic C problem might be mostly (or at least partly) due to residual damage to your enteric nervous system as a result of long-term use of narcotic painkillers, rather than due only to MC.
The thought just occurred to me that such enteric nervous system damage might be a form of peripheral neuropathy (affecting the enteric nervous system, rather than the central nervous system). It makes me wonder if the same type of treatment that I use (substantial daily doses of the active forms of vitamins B-12, B-9, and B-6), might help to undo the damage. In my case, I saw significant improvement in my peripheral neuropathy issues after 8 or 9 months of taking Metanx, which is a prescription version of that vitamin combination.
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.
So these are forbidden foods?
Fecal Anti-gliadin IgA 138 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 29 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 33 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 29 Units (Normal Range is less than 10 Units)
I seem to tolerate a little egg in baked goods, my muffins. That doesn't seem to bother me.
I haven't touched gluten of soy, and the only dairy I ate was a square of milk chocolate. I have no idea if gluten or soy would cause D.
And try the other foods in moderation? Like have some chicken every now and again? Rice, maybe in a baked goody?
I have been taking a sub lingual B complex. Should I increase it? Should I get a prescription for metanx? See if it helps?
The reflux is about killing me. the meds are not helping much. I get these attacks that come with horrible nausea. Nothing is helping.
Fecal Anti-gliadin IgA 138 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 29 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 33 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 29 Units (Normal Range is less than 10 Units)
I seem to tolerate a little egg in baked goods, my muffins. That doesn't seem to bother me.
I haven't touched gluten of soy, and the only dairy I ate was a square of milk chocolate. I have no idea if gluten or soy would cause D.
And try the other foods in moderation? Like have some chicken every now and again? Rice, maybe in a baked goody?
I have been taking a sub lingual B complex. Should I increase it? Should I get a prescription for metanx? See if it helps?
The reflux is about killing me. the meds are not helping much. I get these attacks that come with horrible nausea. Nothing is helping.
Lesley wrote:So these are forbidden foods?
Definitely. However several other members have mentioned that they can often tolerate egg in their baked goods, as long as they don't overdo it.
Lesley wrote:And try the other foods in moderation? Like have some chicken every now and again? Rice, maybe in a baked goody?
Maybe, depending on how you scored on them.
I had great results from Metanx. It's impossible to predict whether or not it may work as well for someone else, but I have no plans to discontinue taking it.
If you could resolve the motility problems, the reflux problems and nausea would probably fade away, also, because they are surely connected.Lesley wrote:The reflux is about killing me. the meds are not helping much. I get these attacks that come with horrible nausea. Nothing is helping.
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.
What do I ask my doctor? How do I get her to prescribe it for me? I am ready to try anything other than go on more meds.
BTW - why is it prescription only?
Rice and chicken were at the top of the no-no list.
The egg thing - I read that others could eat eggs in baked goods so I tried it. Seems to work.
I hope you are right re: the motility and the reflux pain. Right now it's getting worse and worse. The nausea is really getting to me. Seems I have to through an attack when I take meds at night, every night, and today I had a bad attack this afternoon - a first.
BTW - why is it prescription only?
Rice and chicken were at the top of the no-no list.
The egg thing - I read that others could eat eggs in baked goods so I tried it. Seems to work.
I hope you are right re: the motility and the reflux pain. Right now it's getting worse and worse. The nausea is really getting to me. Seems I have to through an attack when I take meds at night, every night, and today I had a bad attack this afternoon - a first.
Lesley, Brandy recently posted about the individual components of Metanx and what she orders here: http://www.perskyfarms.com/phpBB2/viewt ... ght=metanx
I got it all on Amazon and just got started on it, hoping to further eliminate my tremors. Deb
I got it all on Amazon and just got started on it, hoping to further eliminate my tremors. Deb
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Lesley,
I believe that I have damage to my enteric nervous system that causes motility issues as well as constant neuropathic type sensations/pain. I have been taking a b complex vitamin along with additional b12 but after looking at the info about the prescription b that Tex takes I decided to order additional b6 and b9 from Amazon to up my dosages. I tend to use either Thorne Research supplements, Pure Encapsulations, Kirkman Labs or Vital Nutrients because they do not use a lot of additional ingredients. I do not know if my doctor would have prescribed the prescription variety for me but I tend to avoid doctors whenever possible even though I like my doctor well enough.
Jean
I believe that I have damage to my enteric nervous system that causes motility issues as well as constant neuropathic type sensations/pain. I have been taking a b complex vitamin along with additional b12 but after looking at the info about the prescription b that Tex takes I decided to order additional b6 and b9 from Amazon to up my dosages. I tend to use either Thorne Research supplements, Pure Encapsulations, Kirkman Labs or Vital Nutrients because they do not use a lot of additional ingredients. I do not know if my doctor would have prescribed the prescription variety for me but I tend to avoid doctors whenever possible even though I like my doctor well enough.
Jean
Well, I had it easy, because I had a diagnosis of Parkinson's disease, so I had evidence of peripheral neuropathy, and my doctor was already taking Metanx to help preserve memory and cognizance, so he didn't hesitate to prescribe it. It's usually prescribed to diabetics, for treating peripheral neuropathy associated with diabetes. It might require a prescription because it contains a lot of foliate, and all three of the vitamins are in the active form, so that they are more likely to be absorbed (and therefore more likely to possibly present an overdose risk). The most likely reason for the prescription requirement, however, is simply because the primary target audience is diabetics, and the label contains specific claims about treating peripheral neuropathy. In order to make such claims, FDA approval is necessary. It's just vitamins, but whenever specific health claims are made (especially therapeutic claims), prescription status is required. So maybe your doctor will buy the fact that it's only vitamins, in active form, so that they are more likely to be effective.Lesley wrote:What do I ask my doctor? How do I get her to prescribe it for me? I am ready to try anything other than go on more meds.
BTW - why is it prescription only?
If he refuses, I can give you links to non-prescription versions of the individual vitamins, that you can use to make up the same dosage — it's just much more convenient when it's all in one tablet. I haven't compared them, but they may be the same links that Deb mentioned, from one Brandy's posts.
It sounds as though one or more of the meds may be causing the problem.Lesley wrote:Seems I have to through an attack when I take meds at night, every night
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 take so little now. 1/4 of an ambien, metoprolol, 1/4 of a nifiderpine (all I need to keep my BP under control), 50 mgs of pamelor.
That is ALL I take now, apart from the vitamins etc, laxatives, stool softeners etc. Everything else is GONE!
I have tried to change hours of taking them, spread them out more, splitting them up. Nothing helps.
Yesterday I had an attack in the afternoon, without having taken anything at all.
Thanks guys. I will ask about the metanx, and I will look into getting the ingredients if I can't get the prescription. I HOPE things begin to change.
That is ALL I take now, apart from the vitamins etc, laxatives, stool softeners etc. Everything else is GONE!
I have tried to change hours of taking them, spread them out more, splitting them up. Nothing helps.
Yesterday I had an attack in the afternoon, without having taken anything at all.
Thanks guys. I will ask about the metanx, and I will look into getting the ingredients if I can't get the prescription. I HOPE things begin to change.