Thanks Gabes. On point 1, I take a B12 sublingual but no other B vitamins. Would you suggest I take a B vitamin complex? If so, do you have a recommendation for a sublingual brand? On the rash activity, my doctor described it as my immune system being "overactive," suggestive of an autoimmune reaction. He felt it might be linked to the issues with the LC but he wasn't sure. And I am perfectly ok with eating my current limited diet for the rest of my life if it means I get to a point where I'm not so bloated, have less gas, and can get off entocort. How to get there is the key - and I'm with you, it is what it is! Thanks for your advice.Gabes-Apg wrote:the symptoms you mention in point 1 - can be caused by deficiencies in key nutrients like magnesium, Vit D3, B group vitamins, and methylation cycle issues.
good quality magnesium supplementation/application of magnesium oil and active B's which we have already talked about will go long to resolve these issues
rash activity is the immune system struggling - Vit D3 and magnesium is a key aspect to this.
also - Vit C and zinc are key nutrients for the immune system.
as was discussed above, many people here get good remission and can expand their eating plan after 12 months. For some of us where there are other issues happening, this may not be the case. I am 7 years post Dx this week and due to my combo of health issues, nutrient imbalances etc I have not been able to expand my eating plan beyond the stage 2 type plan. I have been eating the same 5-6 vegetables and safe proteins for 7 years.
cie la vie - it is what it is for me... it is the only way i can keep inflammation levels down and have the energy and wellness to work.
Foul gas and bloating - any advice on cause or solution?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Wow - thanks for taking the time to write such a detailed response, and for sharing your personal experiences. So helpful. In response:tex wrote:Interesting. Your issues are somewhat similar to mine.
Here are my thoughts/comments on your points.
1. One August morning in 2009 I got up and started to get dressed. I noticed that my right hand was numb, and didn't seem to be interested in waking up. Then I noticed that the numbness was moving up my forearm. Then I noticed that the right side of my face was becoming numb. That's when I took an aspirin, finished dressing, and headed to the ER. But my right leg was OK. The ER staff couldn't find anything wrong (my troponin enzyme level was normal), but they couldn't rule out a TIA, so that was the diagnosis. I had a second one about 9 months later that began about 10 or 11 at night while I was taking a shower. Same symptoms. I debated whether to go to the ER, and finally decided to go to see if they could run any tests that might show something interesting.
After the first TIA-like event I went to see a neurologist who ran all sorts of tests, including a brain mri, which showed some cortical shrinkage, but nothing remarkable. My scans also showed the white lesions, but no bleeding. But the neurologist noticed my gait and balances issues, and promptly diagnosed me with Parkinson's. At his suggestion, I began to take Metanx, which is a prescription blend of the active forms of vitamins B-6, B-9, and B-12. This helped with my balance issues and my reflexes (at the appointment, I had no reflexes below my knees, and little to no feeling in my feet). I decided that the symptoms were due to neurological damage caused by years of untreated gluten sensitivity. But the neurologist refused to recognize that gluten sensitivity could cause neurological damage (even though proof had existed in the medical literature for at least 6 or 7 years at the time).
Gluten sensitivity as a neurological illness
At the second TIA-like event, I stayed overnight in the hospital for the tests to be run the next morning and while I was waiting, the head of the neurology department came by with one of her students. They could no longer find any basis for a Parkinson's diagnosis, so they undiagnosed me. I still take Metanx, because whenever I have tried to do without it for more than a couple of weeks, my neurological symptoms (balance, gait, coordination, etc.) become noticeable worse.
These days I believe that the TIA-like events were probably due to a combination of gluten-associated neurological damage, and a chronic magnesium deficiency.
2. Basophils and eosinophils are associated with allergic reactions. These readings, together with the rash, suggest mast cell activation disorder (MCAD). Low white cell counts are often associated with viral infections. Vitamin D deficiency is associated with high MPV. High creatinine levels are often associated with a magnesium deficiency. Been there, done that. But looking at all these test results, there probably were several things going on, and one thing often affects another, despite the standard practice of doctors to always look at each issue as an independent event.
Mean Platelet Volume and Vitamin D Level
3. Is there by any chance a bag of wheat flour anywhere in your house?
Tex
1. So sorry to hear you went through with that in 1999. Amazing to think they diagnosed you and then took it back. Would you recommend that I take a B vitamin complex for the neurological issues? I do worry that with my digestion the way it is, that the lack of nutrients causes issues (and perhaps together with my celiac disease caused my initial neurological attack). Right now, I'm only on a sublingual B12. If you think it would help to go to a B Complex, do you have a product/brand you suggest?
2. You are probably right: those tests likely resulted from a lot going on at once. After getting advice from you (following cramping and tingling in my feet), I started on magnesium and that has helped. My vitamin d levels at the time of those test were within the "normal range" (40, I believe), but I still take 5000 UI now. I'm not familiar with the details of MCAD (although I read about it in your book); anything you suggest I do to attack that potential issue?
3. Yes, there is a bag of wheat flour tucked in a pantry in our house. I have a wife and 2 young kids; we haven't gone gluten free despite my celiac disease (and LC) because, prior to my LC, I didn't have any issues. We are careful (I have a separate toaster, separate pots and pans, etc.), but perhaps removing the flour bag would be wise. Is there something specific about the bag of flour that concerns you? Perhaps that it can go "airborne"?
Thanks for all of your help. Just having this conversation gives me hope. I'm so very thankful.
The "B" vitamins for those of us who have methylation issues:
Metanx is a prescription-only "medical food" I believe it's called. It was originally developed to treat the peripheral neuropathy that often develops with diabetes. Metanx contains the active forms of all 3 of the B vitamins thought to be important, in the proper ratios. Way too much or too little of any of them can cause problems because of the imbalance. But there is a way to formulate this combination with OTC vitamins at about half the cost of Metanx. The downside is that it's not as convenient to have to take multiple pills in place of just 1.
Metanx substitutes that are available do not work. I've read in various locations on the web, that most people who truly need this product (IOW, people who need the active forms of these particular vitamins to correct or prevent neurological issues) complain that the generic product does not work very well for them. The reason is because one or more of the vitamins in the generic are in provitamin form, not the active form. Provitamins are the form available in most common vitamin products, because they are much cheaper than the active form. Provitamins have to be converted to the active form before they can be utilized by the body, and they have to be converted inside the body, by some special process. For some of us (who have methylation issues), those conversion processes are compromised, so that only the active form provides any benefits for us. For example, the regular version of vitamin B-12 is cyanocobalamin, whereas the active form is methylcobalamin. Anyway, because of that, I've never even considered taking a generic form of Metanx. There's some discussion about this in the thread at the following link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17296
There's another way to skin this cat, however. Because Metanx has (since the advent of the "Affordable Care Act") roughly tripled in price, I have "made up" my own version that I sometimes use. It consists of individual vitamins (in the active form) that can be bought on Amazon and other places. I used this for a while, and then went back to the Metanx, because it is so much easier to take a single pill each morning, than to have to make it up by taking 5 or 6 pills.
Metanx contains:
35 mg of Pyridoxal 5'-phosphate (which is the active form of B-6)
3 mg of L-methylfolate Calcium (which is the active form of B-9)
2 mg of Methylcobalamin (which is the active form of B-12)
That can be obtained from:
Vital Nutrients brand of Pyridoxal-5 Phosphate, 50 mg. Inert ingredients are: rice powder, gelatin capsule, leucine, and silica.
To match the dose, take 1 capsule per day, 2 days in a row, then skip the 3rd day, then start over. IOW, this will amount to 2 capsules every 3 days, in order to average out at 33 mg per day.
Life Extension brand of Optimized Folate (L-methylfolate), 1,000 mcg. Inert ingredients are: mirocrystaline cellulose, vegetable cellulose (capsule), silica, vegetable stearate. The label specifically names all of the common allergens (including milk, eggs, soy, wheat, yeast, nuts, corn, rice, etc.), and the product is certified to be free of all of them.
To match the dose, take 3 capsules each day.
2,000 mcg of methylcobalamin. There are a number of options available for methylcomalamin. The one I used is Wonder Laboratories brand of Methyl Cobalamin, 5,000 mcg. Be aware that it contains mannitol, citric acid, and stevia.
To match the dose, take 1 tablet, then skip a day, take another tablet, then skip 2 days, then repeat. IOW this will amount to taking 2 tablets every 5 days, in order to average out at 2,000 mcg per day.
All of these products are available without a prescription. If I recall correctly, Brandy has also used a similar "home-compounded" version of Metanx, with good success. I believe that a number of other members have also used this or a similar version to resolve various neurologtical symptoms.
Mast cell issues or MCAD:
Regarding mast cell issues or MCAD, most of us who have this problem try to minimize the intake of high-histamine foods by following certain practices:
Histamine levels for any food increase over time (unless they are frozen below zero degrees Fahrenheit). But some foods are notorious for developing high histamine levels relatively quickly. For example, fresh (or fresh frozen) chicken or fish are not high histamine foods. But if they sit in the refrigerator (IOW, if they're stored at normal refrigeration temperatures) for a day or two, they soon become high histamine foods. And that also applies after they're cooked.
The solution:
1. Buy them fresh or frozen and either freeze them until you're ready to cook them, or cook them immediately
2. After cooking, promptly freeze any leftovers (in serving size containers)
3. Fast thaw, reheat, and eat, as desired
Bananas are considered to be a high histamine food. But until they become ripe, they are not a high histamine food. As soon as they begin to ripen, their histamine content quickly rises so that after they have been ripe for a day or two, they become high histamine foods. This applies to virtually any fruit. I eat a banana virtually every day, but when I buy bananas, I don't buy ripe bananas. I buy bananas that are almost ripe and when I get them home I immediately peel them and store them in ziploc bags in the freezer. When I want a snack, I take one out, let it begin to thaw for maybe a minute, and then slather some cashew butter or almond butter on it, and enjoy a great snack.
But fermented/smoked/dried foods are always high histamine foods when purchased.
Wheat flour:
This is just my personal opinion, but I believe that if wheat flour is kept in the house, that makes following a truly gluten-free diet an almost impossible goal. Been there, done that. About 5 or 6 years ago I noticed my symptoms slowly beginning to return. I would wake up most mornings with a stiff, sore neck and lower back pains. Occasionally I would have some bloating or D. When I ordered an EnteroLab stool test, my anti-gliadin antibody level was 62. Why did this happen? Because someone else in the house continued to use wheat flour (even though they thought they were being careful with it).
To see the risk, open a bag of flour early or late in the day when streaks of sunlight are streaming in through a window. The number of particles that can be seen drifting around in all directions in those light beams will surprise you. Or just drop an unopened bag of flour a couple of inches onto a countertop and look at all the flour that gets blown into the air. Wheat flour is so fine that it billows up and goes everywhere. And it settles on everything — not only on tables and countertops and everything else that's exposed, but smaller amounts also settle on dishes and utensils stored in cabinets and drawers. And every time a cabinet door is opened, air currents sweep some flour particles into the air. Every time someone walks through the kitchen, flour particles billow up from the slight air currents caused by the movement. Wheat flour is insidious stuff. I would bet a GF cookie that any celiac living within several hundred yards of a flour mill would always show relatively high anti-gliadin antibody levels, regardless of the direction of the prevailing winds, simply because the stuff goes everywhere, and it never leaves — it just tends to be continually relocated by air currents. Yes, it can be wiped off countertops to remove a lot of it, but it can't be wiped out of the air, without sophisticated filtration systems.
Contamination from processed foods that contain gluten is relatively easy to avoid, because that gluten stays put. You just have to wipe up the crumbs and keep them off your food, wash your hands, etc. But wheat flour doesn't stay put. It's always on the move, looking for another place to hide, and another plate to contaminate. Celiacs who have relatively high tolerance levels may be able to tolerate wheat flour in the house if good cleanup practices are followed, but IMO many of us are exposed to more than we can tolerate, despite the best of precautions.
At least that's the way I see it.
Venison:
Venison is a good, safe protein source. It's main drawback is the lack of fat, which has to be made up somewhere else.
You're very welcome,
Tex
Metanx is a prescription-only "medical food" I believe it's called. It was originally developed to treat the peripheral neuropathy that often develops with diabetes. Metanx contains the active forms of all 3 of the B vitamins thought to be important, in the proper ratios. Way too much or too little of any of them can cause problems because of the imbalance. But there is a way to formulate this combination with OTC vitamins at about half the cost of Metanx. The downside is that it's not as convenient to have to take multiple pills in place of just 1.
Metanx substitutes that are available do not work. I've read in various locations on the web, that most people who truly need this product (IOW, people who need the active forms of these particular vitamins to correct or prevent neurological issues) complain that the generic product does not work very well for them. The reason is because one or more of the vitamins in the generic are in provitamin form, not the active form. Provitamins are the form available in most common vitamin products, because they are much cheaper than the active form. Provitamins have to be converted to the active form before they can be utilized by the body, and they have to be converted inside the body, by some special process. For some of us (who have methylation issues), those conversion processes are compromised, so that only the active form provides any benefits for us. For example, the regular version of vitamin B-12 is cyanocobalamin, whereas the active form is methylcobalamin. Anyway, because of that, I've never even considered taking a generic form of Metanx. There's some discussion about this in the thread at the following link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17296
There's another way to skin this cat, however. Because Metanx has (since the advent of the "Affordable Care Act") roughly tripled in price, I have "made up" my own version that I sometimes use. It consists of individual vitamins (in the active form) that can be bought on Amazon and other places. I used this for a while, and then went back to the Metanx, because it is so much easier to take a single pill each morning, than to have to make it up by taking 5 or 6 pills.
Metanx contains:
35 mg of Pyridoxal 5'-phosphate (which is the active form of B-6)
3 mg of L-methylfolate Calcium (which is the active form of B-9)
2 mg of Methylcobalamin (which is the active form of B-12)
That can be obtained from:
Vital Nutrients brand of Pyridoxal-5 Phosphate, 50 mg. Inert ingredients are: rice powder, gelatin capsule, leucine, and silica.
To match the dose, take 1 capsule per day, 2 days in a row, then skip the 3rd day, then start over. IOW, this will amount to 2 capsules every 3 days, in order to average out at 33 mg per day.
Life Extension brand of Optimized Folate (L-methylfolate), 1,000 mcg. Inert ingredients are: mirocrystaline cellulose, vegetable cellulose (capsule), silica, vegetable stearate. The label specifically names all of the common allergens (including milk, eggs, soy, wheat, yeast, nuts, corn, rice, etc.), and the product is certified to be free of all of them.
To match the dose, take 3 capsules each day.
2,000 mcg of methylcobalamin. There are a number of options available for methylcomalamin. The one I used is Wonder Laboratories brand of Methyl Cobalamin, 5,000 mcg. Be aware that it contains mannitol, citric acid, and stevia.
To match the dose, take 1 tablet, then skip a day, take another tablet, then skip 2 days, then repeat. IOW this will amount to taking 2 tablets every 5 days, in order to average out at 2,000 mcg per day.
All of these products are available without a prescription. If I recall correctly, Brandy has also used a similar "home-compounded" version of Metanx, with good success. I believe that a number of other members have also used this or a similar version to resolve various neurologtical symptoms.
Mast cell issues or MCAD:
Regarding mast cell issues or MCAD, most of us who have this problem try to minimize the intake of high-histamine foods by following certain practices:
Histamine levels for any food increase over time (unless they are frozen below zero degrees Fahrenheit). But some foods are notorious for developing high histamine levels relatively quickly. For example, fresh (or fresh frozen) chicken or fish are not high histamine foods. But if they sit in the refrigerator (IOW, if they're stored at normal refrigeration temperatures) for a day or two, they soon become high histamine foods. And that also applies after they're cooked.
The solution:
1. Buy them fresh or frozen and either freeze them until you're ready to cook them, or cook them immediately
2. After cooking, promptly freeze any leftovers (in serving size containers)
3. Fast thaw, reheat, and eat, as desired
Bananas are considered to be a high histamine food. But until they become ripe, they are not a high histamine food. As soon as they begin to ripen, their histamine content quickly rises so that after they have been ripe for a day or two, they become high histamine foods. This applies to virtually any fruit. I eat a banana virtually every day, but when I buy bananas, I don't buy ripe bananas. I buy bananas that are almost ripe and when I get them home I immediately peel them and store them in ziploc bags in the freezer. When I want a snack, I take one out, let it begin to thaw for maybe a minute, and then slather some cashew butter or almond butter on it, and enjoy a great snack.
But fermented/smoked/dried foods are always high histamine foods when purchased.
Wheat flour:
This is just my personal opinion, but I believe that if wheat flour is kept in the house, that makes following a truly gluten-free diet an almost impossible goal. Been there, done that. About 5 or 6 years ago I noticed my symptoms slowly beginning to return. I would wake up most mornings with a stiff, sore neck and lower back pains. Occasionally I would have some bloating or D. When I ordered an EnteroLab stool test, my anti-gliadin antibody level was 62. Why did this happen? Because someone else in the house continued to use wheat flour (even though they thought they were being careful with it).
To see the risk, open a bag of flour early or late in the day when streaks of sunlight are streaming in through a window. The number of particles that can be seen drifting around in all directions in those light beams will surprise you. Or just drop an unopened bag of flour a couple of inches onto a countertop and look at all the flour that gets blown into the air. Wheat flour is so fine that it billows up and goes everywhere. And it settles on everything — not only on tables and countertops and everything else that's exposed, but smaller amounts also settle on dishes and utensils stored in cabinets and drawers. And every time a cabinet door is opened, air currents sweep some flour particles into the air. Every time someone walks through the kitchen, flour particles billow up from the slight air currents caused by the movement. Wheat flour is insidious stuff. I would bet a GF cookie that any celiac living within several hundred yards of a flour mill would always show relatively high anti-gliadin antibody levels, regardless of the direction of the prevailing winds, simply because the stuff goes everywhere, and it never leaves — it just tends to be continually relocated by air currents. Yes, it can be wiped off countertops to remove a lot of it, but it can't be wiped out of the air, without sophisticated filtration systems.
Contamination from processed foods that contain gluten is relatively easy to avoid, because that gluten stays put. You just have to wipe up the crumbs and keep them off your food, wash your hands, etc. But wheat flour doesn't stay put. It's always on the move, looking for another place to hide, and another plate to contaminate. Celiacs who have relatively high tolerance levels may be able to tolerate wheat flour in the house if good cleanup practices are followed, but IMO many of us are exposed to more than we can tolerate, despite the best of precautions.
At least that's the way I see it.
Venison:
Venison is a good, safe protein source. It's main drawback is the lack of fat, which has to be made up somewhere else.
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.
Tex, this is so very helpful. Thank you. I'm going to follow your advice and see where it takes me. The only thing I may consider doing (to save cost, and for the convenience of 1 pill) is try a "one-stop" methylation B vitamin to see if that helps before going into your recipe for Metanx. After some research, I'll likely try:tex wrote:The "B" vitamins for those of us who have methylation issues:
Metanx is a prescription-only "medical food" I believe it's called. It was originally developed to treat the peripheral neuropathy that often develops with diabetes. Metanx contains the active forms of all 3 of the B vitamins thought to be important, in the proper ratios. Way too much or too little of any of them can cause problems because of the imbalance. But there is a way to formulate this combination with OTC vitamins at about half the cost of Metanx. The downside is that it's not as convenient to have to take multiple pills in place of just 1.
Metanx substitutes that are available do not work. I've read in various locations on the web, that most people who truly need this product (IOW, people who need the active forms of these particular vitamins to correct or prevent neurological issues) complain that the generic product does not work very well for them. The reason is because one or more of the vitamins in the generic are in provitamin form, not the active form. Provitamins are the form available in most common vitamin products, because they are much cheaper than the active form. Provitamins have to be converted to the active form before they can be utilized by the body, and they have to be converted inside the body, by some special process. For some of us (who have methylation issues), those conversion processes are compromised, so that only the active form provides any benefits for us. For example, the regular version of vitamin B-12 is cyanocobalamin, whereas the active form is methylcobalamin. Anyway, because of that, I've never even considered taking a generic form of Metanx. There's some discussion about this in the thread at the following link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17296
There's another way to skin this cat, however. Because Metanx has (since the advent of the "Affordable Care Act") roughly tripled in price, I have "made up" my own version that I sometimes use. It consists of individual vitamins (in the active form) that can be bought on Amazon and other places. I used this for a while, and then went back to the Metanx, because it is so much easier to take a single pill each morning, than to have to make it up by taking 5 or 6 pills.
Metanx contains:
35 mg of Pyridoxal 5'-phosphate (which is the active form of B-6)
3 mg of L-methylfolate Calcium (which is the active form of B-9)
2 mg of Methylcobalamin (which is the active form of B-12)
That can be obtained from:
Vital Nutrients brand of Pyridoxal-5 Phosphate, 50 mg. Inert ingredients are: rice powder, gelatin capsule, leucine, and silica.
To match the dose, take 1 capsule per day, 2 days in a row, then skip the 3rd day, then start over. IOW, this will amount to 2 capsules every 3 days, in order to average out at 33 mg per day.
Life Extension brand of Optimized Folate (L-methylfolate), 1,000 mcg. Inert ingredients are: mirocrystaline cellulose, vegetable cellulose (capsule), silica, vegetable stearate. The label specifically names all of the common allergens (including milk, eggs, soy, wheat, yeast, nuts, corn, rice, etc.), and the product is certified to be free of all of them.
To match the dose, take 3 capsules each day.
2,000 mcg of methylcobalamin. There are a number of options available for methylcomalamin. The one I used is Wonder Laboratories brand of Methyl Cobalamin, 5,000 mcg. Be aware that it contains mannitol, citric acid, and stevia.
To match the dose, take 1 tablet, then skip a day, take another tablet, then skip 2 days, then repeat. IOW this will amount to taking 2 tablets every 5 days, in order to average out at 2,000 mcg per day.
All of these products are available without a prescription. If I recall correctly, Brandy has also used a similar "home-compounded" version of Metanx, with good success. I believe that a number of other members have also used this or a similar version to resolve various neurologtical symptoms.
Mast cell issues or MCAD:
Regarding mast cell issues or MCAD, most of us who have this problem try to minimize the intake of high-histamine foods by following certain practices:
Histamine levels for any food increase over time (unless they are frozen below zero degrees Fahrenheit). But some foods are notorious for developing high histamine levels relatively quickly. For example, fresh (or fresh frozen) chicken or fish are not high histamine foods. But if they sit in the refrigerator (IOW, if they're stored at normal refrigeration temperatures) for a day or two, they soon become high histamine foods. And that also applies after they're cooked.
The solution:
1. Buy them fresh or frozen and either freeze them until you're ready to cook them, or cook them immediately
2. After cooking, promptly freeze any leftovers (in serving size containers)
3. Fast thaw, reheat, and eat, as desired
Bananas are considered to be a high histamine food. But until they become ripe, they are not a high histamine food. As soon as they begin to ripen, their histamine content quickly rises so that after they have been ripe for a day or two, they become high histamine foods. This applies to virtually any fruit. I eat a banana virtually every day, but when I buy bananas, I don't buy ripe bananas. I buy bananas that are almost ripe and when I get them home I immediately peel them and store them in ziploc bags in the freezer. When I want a snack, I take one out, let it begin to thaw for maybe a minute, and then slather some cashew butter or almond butter on it, and enjoy a great snack.
But fermented/smoked/dried foods are always high histamine foods when purchased.
Wheat flour:
This is just my personal opinion, but I believe that if wheat flour is kept in the house, that makes following a truly gluten-free diet an almost impossible goal. Been there, done that. About 5 or 6 years ago I noticed my symptoms slowly beginning to return. I would wake up most mornings with a stiff, sore neck and lower back pains. Occasionally I would have some bloating or D. When I ordered an EnteroLab stool test, my anti-gliadin antibody level was 62. Why did this happen? Because someone else in the house continued to use wheat flour (even though they thought they were being careful with it).
To see the risk, open a bag of flour early or late in the day when streaks of sunlight are streaming in through a window. The number of particles that can be seen drifting around in all directions in those light beams will surprise you. Or just drop an unopened bag of flour a couple of inches onto a countertop and look at all the flour that gets blown into the air. Wheat flour is so fine that it billows up and goes everywhere. And it settles on everything — not only on tables and countertops and everything else that's exposed, but smaller amounts also settle on dishes and utensils stored in cabinets and drawers. And every time a cabinet door is opened, air currents sweep some flour particles into the air. Every time someone walks through the kitchen, flour particles billow up from the slight air currents caused by the movement. Wheat flour is insidious stuff. I would bet a GF cookie that any celiac living within several hundred yards of a flour mill would always show relatively high anti-gliadin antibody levels, regardless of the direction of the prevailing winds, simply because the stuff goes everywhere, and it never leaves — it just tends to be continually relocated by air currents. Yes, it can be wiped off countertops to remove a lot of it, but it can't be wiped out of the air, without sophisticated filtration systems.
Contamination from processed foods that contain gluten is relatively easy to avoid, because that gluten stays put. You just have to wipe up the crumbs and keep them off your food, wash your hands, etc. But wheat flour doesn't stay put. It's always on the move, looking for another place to hide, and another plate to contaminate. Celiacs who have relatively high tolerance levels may be able to tolerate wheat flour in the house if good cleanup practices are followed, but IMO many of us are exposed to more than we can tolerate, despite the best of precautions.
At least that's the way I see it.
Venison:
Venison is a good, safe protein source. It's main drawback is the lack of fat, which has to be made up somewhere else.
You're very welcome,
Tex
amazon.com/Pure-Therapeutics-Pharmaceutical-Complete-Supplement/dp/B00Y3QD8AG
Let me know if you think I'm off base; if not, I'll report back to the group with what I find. I have no doubt what you are suggesting will work, and is a good approach, however.
I can't thank you enough. I'll be in touch with my progress. Thank you for being so generous with your time and insight.
The product you listed is roughly half the strength of Metanx. The folate level is higher, so if you take 2 capsules to approximate the B-6 and B-12 dosage of Metanx, the higher methylfolate level might be a problem (but probably not). But even taking 2 capsules per day, the cost is roughly one-third the cost of Metanx, so that's a big plus.
Good luck with your recovery,
Tex
Good luck with your recovery,
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.
Taking in to account that we are all individuals...what I have found a godsend for me is the low FODMAP diet. You can google it and find that this diet varies a bit by author but is essentially No wheat, no dairy, no fruit, no cruciferous vegetables and no beans/legumes. It also has low sugars. One has to take into account that tomatoes, squash and avocados are actually in the fruit family. This has helped the D plus removed most bloating and foul smelling gas for ME. I tried a bit of cooked peaches in the past couple of days and now am housebound with D! The FODMAP is pretty balanced. You can have greens and such. I am finding that I must cook everything. Salad even well chewed is a disaster. I avoid supplements but do take Calcium with vitamin d. Extra vitamin d, turmeric and melatonin at night and a good probio. I also drink coconut water when I have active D. I really believe in balance. I did buy some greens powder but realized that it also has some fruits in it so leaving it for someone else. I am thinking of taking the super greens mix that I get at Costco which is organic, dry it and turn it into powder for additional nutrients. I make a lot of soup which seems to be the most soothing to my system and the vegies in there are essentially mush.
I also have another thought that was raised by the article regarding IBS. They spoke of fecal transplants. When I first heard of this a few years ago I thought it was beyond gross but had a patient who had developed C. Diff. Antibiotics and all of the usual remedies and diets were tried but it just kept returning. I think that the oncologist figured that she just had anxiety issues...we have all been there, right? Well she researched and found the info on the fecal transplant. She badgered her insurance to okay it. One transplant and she said goodbye to the C. Diff!!!!!! Makes me wonder if there is something for the rest of us in this realm??
I also have another thought that was raised by the article regarding IBS. They spoke of fecal transplants. When I first heard of this a few years ago I thought it was beyond gross but had a patient who had developed C. Diff. Antibiotics and all of the usual remedies and diets were tried but it just kept returning. I think that the oncologist figured that she just had anxiety issues...we have all been there, right? Well she researched and found the info on the fecal transplant. She badgered her insurance to okay it. One transplant and she said goodbye to the C. Diff!!!!!! Makes me wonder if there is something for the rest of us in this realm??
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Thus far I have not seen any MC'er or someone with complex IBD issues get remission via fecal transplant
(i am part of a gut health group on FB) I see people get a few weeks of improvement but within months, they are back in major flare.
here are some recent discussions on the topic of fecal transplant
http://www.perskyfarms.com/phpBB2/viewt ... ight=fecal
one of the main things that I have learnt during my journey, i struggle to heal my gut while i had dental issues - which meant that bacteria etc was being fed into my gut everyday. once i removed the troublesome teeth i was able to heal leaky gut and have good digestion process.
my pondering is with fecal transplants is that is only treating one area of the long and complex digestion system and if the recipient has dental issues, nutritional imbalances etc then it wont provide long term wellness.
(i am part of a gut health group on FB) I see people get a few weeks of improvement but within months, they are back in major flare.
here are some recent discussions on the topic of fecal transplant
http://www.perskyfarms.com/phpBB2/viewt ... ight=fecal
one of the main things that I have learnt during my journey, i struggle to heal my gut while i had dental issues - which meant that bacteria etc was being fed into my gut everyday. once i removed the troublesome teeth i was able to heal leaky gut and have good digestion process.
my pondering is with fecal transplants is that is only treating one area of the long and complex digestion system and if the recipient has dental issues, nutritional imbalances etc then it wont provide long term wellness.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
To add to what Gabes posted, gut bacteria balance is determined by diet, environment, and digestion efficiency. Trying to force a change in the gut microbiome without appropriate diet changes is a waste of time because gut homeostasis will promptly return to the balance dictated by diet, environment, and digestive ability.
That said, fecal transplants work quite well for C. diff infections because C. diff are an opportunistic bacteria that become attached to the gut wall usually because of empty spaces resulting from antibiotic treatments or similar disruptions in the gut bacteria population profile. Fecal transplants contain more competitive bacteria strains (more competitive than the C. diff bacteria) because they were previously attached to a human gut wall, so they are able to shut out the C. diff bacteria by outcompeting them for attachment spaces. Probiotic bacteria cannot attach to the gut wall because they were not raised in a human gut. They were raised in a lab. That's why they cannot outcompete C. diff.
And because MC causes poor digestion, the microbiome of an MC patient (or any IBD patient) will be different when the disease is active than when it is in remission (because a different profile of nutrients will be available in the gut when the disease is in remission). As a result, the microbiome soon reverts back to what it was before the fecal transplant (in a person who has active MC). That's why fecal transplants don't work for treating MC (because the transplanted microbiome of a person with normal digestion cannot survive in the gut of a person who has MC, due to the incorrect feedstock available to support/feed the bacteria).
I hope you can see what I'm trying to say, and I haven't just confused the issue.
Tex
That said, fecal transplants work quite well for C. diff infections because C. diff are an opportunistic bacteria that become attached to the gut wall usually because of empty spaces resulting from antibiotic treatments or similar disruptions in the gut bacteria population profile. Fecal transplants contain more competitive bacteria strains (more competitive than the C. diff bacteria) because they were previously attached to a human gut wall, so they are able to shut out the C. diff bacteria by outcompeting them for attachment spaces. Probiotic bacteria cannot attach to the gut wall because they were not raised in a human gut. They were raised in a lab. That's why they cannot outcompete C. diff.
And because MC causes poor digestion, the microbiome of an MC patient (or any IBD patient) will be different when the disease is active than when it is in remission (because a different profile of nutrients will be available in the gut when the disease is in remission). As a result, the microbiome soon reverts back to what it was before the fecal transplant (in a person who has active MC). That's why fecal transplants don't work for treating MC (because the transplanted microbiome of a person with normal digestion cannot survive in the gut of a person who has MC, due to the incorrect feedstock available to support/feed the bacteria).
I hope you can see what I'm trying to say, and I haven't just confused the issue.
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.
Hi Gabes,Gabes-Apg wrote:Hi Bttory
Did you figure out the trigger for the gas??
Very kind of you to check in on me, thanks. I'd say that if my gas and bloating was at a 10 out of 10 when we last conversed, I'm now at a 7 out of 10, which is still no fun, but in my mind is good progress. I've taken these steps, based on the group's helpful advice:
(1) started taking a B complex tailored to methylation issues;
(2) stopped using the "pink" generic Entocort and returned to the "red and gray" Entocort (that produced significant results almost immediately);
(3) stopped eating red meat and chicken (I have only been eating ground turkey, and starting next week will be eating turkey free of rosemary extract - I found a source; also, I bought some ground venison, emu, and elk, and will see how that treats me);
(4) drastically reduced gluten sources in our house (I have celiac and am strictly gluten free, but now in our hours, there is no flour, etc., and the house is 80% gluten free, with the goal of 100% gluten free in the next month or so);
(5) continuing my very limited diet (only turkey, winter squash, cream of rice once a day, bananas, sweet potato, and coconut bar), and "testing" certain foods (cutting out olive oil, for example, to see if it makes a change; if it does not, I move on to another food (this morning I gave up my daily decaf coffee);
(6) took steps to reduce histamine in food (I freeze bananas upon purchase, per Tex's advice, I cook then freeze turkey burgers, etc.);
(7) started a controlled weaning off entocort (in case it is affecting me); I'll go from 6mg to 3mg every 5 days, then reduce as I get stable;
(8) I will start intermittent fasting once a month (for a 3 day stretch, with some MCT Oil and BCAA allowed during the fast, a la Tim Ferriss's protocol, to start);
(9) renewed focus on sleep - I get up early to work out, but will dial that back once or twice a week to ensure 8 hours sleep on those days.
So, we'll see if the progress continues. I really appreciate you checking in, and all the advice that has put me on the path towards recovery. I welcome any thoughts on my healing protocol, if you have any. And I'll be sure to check in with you all if I have any breakthroughs that may be helpful to the group. Thanks all.
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
progress within 2 weeks the over the week of Christmas is good progress
interesting that changing entocort produced good results quickly..
the changes you are making are fantastic steps towards good healing. figuring out the 'safe' low histamine eating plan can take a bit of time, but is worth all the time and effort as it will be foundation of your eating plan for long term.
hopefully 4-6 weeks of the B complex some more improvements will come.
Please keep us updated
happy healing
interesting that changing entocort produced good results quickly..
the changes you are making are fantastic steps towards good healing. figuring out the 'safe' low histamine eating plan can take a bit of time, but is worth all the time and effort as it will be foundation of your eating plan for long term.
hopefully 4-6 weeks of the B complex some more improvements will come.
Please keep us updated
happy healing
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama