The right diet strategy to heal
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
from the moment I took entocort in a (for me) double dose (2 capsules) I felt strange, not myself, chased, little nauseous and dizzy if I moved my head to fast, after a view hours a headache. It felt like a combination of being drunk and having a hang over at the same time. At lower dose (1 capsule a day) those side effect went a way. My side effect on a lower dose are in the first 6 months acne, fungus nails (still, I think due to suppressing of the immune system) and more and new pigment spots on arms and legs. I believe this is caused by changes in my hormone system. My periods are also more severe and more often.
And you know what can make my furious, if I mention the milder side effects as fungus nails, pigment spots, acne, change in periods, it is all causes because I get "older". Just from one day to the other, from the moment I start taking entocort I got all these things because "I am getting older". What is it with people in general with the media (at least here in the Netherlands) as soon as women are over 40 every problem big or small only have one cause: aging. If you gain weight, it is because of you are over 40 (what about wrong diet and lack of exercise), if you are tired, also over 40 (again what about life style, food habits and exercise). Of course
And you know what can make my furious, if I mention the milder side effects as fungus nails, pigment spots, acne, change in periods, it is all causes because I get "older". Just from one day to the other, from the moment I start taking entocort I got all these things because "I am getting older". What is it with people in general with the media (at least here in the Netherlands) as soon as women are over 40 every problem big or small only have one cause: aging. If you gain weight, it is because of you are over 40 (what about wrong diet and lack of exercise), if you are tired, also over 40 (again what about life style, food habits and exercise). Of course
Harma,
I know what you mean. 'You just have to expect these things when you get older'. Well no you don't. There are heaps of people who stay fit and active and healthy until they are twice your age (twice my age is pushing it, but I plan on being the exception). We just have to work out how to do that with our digestive hassles making it all a bit trickier. A bit more effort. But still doable.
The doctors are a limited help in this space.
Lyn.
I know what you mean. 'You just have to expect these things when you get older'. Well no you don't. There are heaps of people who stay fit and active and healthy until they are twice your age (twice my age is pushing it, but I plan on being the exception). We just have to work out how to do that with our digestive hassles making it all a bit trickier. A bit more effort. But still doable.
The doctors are a limited help in this space.
Lyn.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Harma and Lyn
i think in the thread about Tex's blood test results we discussed this
i think doctors are 'brain trained' that if they cant give you a pill to resolve the symptom(s) (without causing worse symptoms) then most struggle to support people with conditions like this.
where the symptoms are a cross over of digestion, joints, muscle and bones, eyes, skin and all the other lovely whole of body things we get, then they really struggle, as most treatments are aimed at one issue evident by one or two symptoms.
my current GP has acknowledged that there is no easy answer or one pill solution they can offer. They are happy with my informed pro-active self management of my issues (MC and hormone issues), yes they will research and discuss with me any drug treatment i am willing to consider.
aside from that they check my BP, write scripts for the meds i do require and keep note of my intollerances on their file. and will issue any letters that i require for work or travel.
(i have a standing letter lodged with HR re my condition to cover any absenses so i dont have to go and get a certificate anyday i am off work)
i think in the thread about Tex's blood test results we discussed this
i think doctors are 'brain trained' that if they cant give you a pill to resolve the symptom(s) (without causing worse symptoms) then most struggle to support people with conditions like this.
where the symptoms are a cross over of digestion, joints, muscle and bones, eyes, skin and all the other lovely whole of body things we get, then they really struggle, as most treatments are aimed at one issue evident by one or two symptoms.
my current GP has acknowledged that there is no easy answer or one pill solution they can offer. They are happy with my informed pro-active self management of my issues (MC and hormone issues), yes they will research and discuss with me any drug treatment i am willing to consider.
aside from that they check my BP, write scripts for the meds i do require and keep note of my intollerances on their file. and will issue any letters that i require for work or travel.
(i have a standing letter lodged with HR re my condition to cover any absenses so i dont have to go and get a certificate anyday i am off work)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I got my EnteroLab results today.
Frankly speaking, I am slightly disappointed, because I believed there would be results to yeast, egg and soy sensitivity as well, but there were none.
Before the test I have eaten quite freely baguette with cheese, wine, eggs, soy and everything else...
Here are the results:
Final Laboratory Report
A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 8 Units (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA 5 Units (Normal Range is less than 10 Units)
Quantitative Microscopic Fecal Fat Score 445 Units (Normal Range is less than 300 Units)
Fecal Anti-casein (cow’s milk) IgA 4 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)
and the interpretation:
Interpretation of Fecal Anti-gliadin IgA: Intestinal antigliadin IgA antibody was below the upper limit of normal, and hence there is no direct evidence of active gluten sensitivity from this test. However, because 1 in 500 people cannot make IgA at all, and rarely, and some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have a syndrome or symptoms known to be associated with gluten sensitivity, a gluten-free diet may help you despite a negative test. If you have no syndrome or symptoms associated with gluten sensitivity, you can follow a gluten-containing healthy diet and retest in 3-5 years; or you may opt to go gluten-free as a purely preventive measure.
Interpretation of Fecal Anti-tissue Transglutaminase IgA: The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.
Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates there is an increased amount of dietary fat in the stool which usually is due to gluten-induced small intestinal malabsorption/damage when associated with gluten sensitivity. Values between 300-600 Units are mild elevations, 600-1000 Units moderate elevations, and values greater than 1000 Units are severe elevations. Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist because chronic fat malabsorption is associated with osteoporosis among other nutritional deficiency syndromes.
Interpretation of Fecal Anti-casein (cow’s milk) IgA: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.
Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration
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To restate my symptoms: abdominal pain asociated with bloating. Quite a substantial weight loss ( 13 kG over 6 months). Recently, I also felt slight pain in the leg muscles above the knees when walking out. No explosive D, although before I started the diet the BM were often disturbed. In the past I have done other food sensitivity tests, based on blood samples and on muscle tension analysis, and both independently have indicated that I had sensitivity to yeast, while only the blood test indicated some sensitivity to cow's cheese.
Currently I am on a GF CF SF YF diet, and the pain is usually evident after meals, especially if I had cooked vegetables or some residual amounts of fiber, but it has started to improve somewhat.
It looks like I am not much wiser after this test than I was before. Has any of you got any ideas as to what would be the obvious conclusions from the test?
Also, what would be in your opinion the most logical continuation of my diet?
Thanks for your help.
Marek
Frankly speaking, I am slightly disappointed, because I believed there would be results to yeast, egg and soy sensitivity as well, but there were none.
Before the test I have eaten quite freely baguette with cheese, wine, eggs, soy and everything else...
Here are the results:
Final Laboratory Report
A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 8 Units (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA 5 Units (Normal Range is less than 10 Units)
Quantitative Microscopic Fecal Fat Score 445 Units (Normal Range is less than 300 Units)
Fecal Anti-casein (cow’s milk) IgA 4 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)
and the interpretation:
Interpretation of Fecal Anti-gliadin IgA: Intestinal antigliadin IgA antibody was below the upper limit of normal, and hence there is no direct evidence of active gluten sensitivity from this test. However, because 1 in 500 people cannot make IgA at all, and rarely, and some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have a syndrome or symptoms known to be associated with gluten sensitivity, a gluten-free diet may help you despite a negative test. If you have no syndrome or symptoms associated with gluten sensitivity, you can follow a gluten-containing healthy diet and retest in 3-5 years; or you may opt to go gluten-free as a purely preventive measure.
Interpretation of Fecal Anti-tissue Transglutaminase IgA: The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.
Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates there is an increased amount of dietary fat in the stool which usually is due to gluten-induced small intestinal malabsorption/damage when associated with gluten sensitivity. Values between 300-600 Units are mild elevations, 600-1000 Units moderate elevations, and values greater than 1000 Units are severe elevations. Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist because chronic fat malabsorption is associated with osteoporosis among other nutritional deficiency syndromes.
Interpretation of Fecal Anti-casein (cow’s milk) IgA: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.
Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration
-----------
To restate my symptoms: abdominal pain asociated with bloating. Quite a substantial weight loss ( 13 kG over 6 months). Recently, I also felt slight pain in the leg muscles above the knees when walking out. No explosive D, although before I started the diet the BM were often disturbed. In the past I have done other food sensitivity tests, based on blood samples and on muscle tension analysis, and both independently have indicated that I had sensitivity to yeast, while only the blood test indicated some sensitivity to cow's cheese.
Currently I am on a GF CF SF YF diet, and the pain is usually evident after meals, especially if I had cooked vegetables or some residual amounts of fiber, but it has started to improve somewhat.
It looks like I am not much wiser after this test than I was before. Has any of you got any ideas as to what would be the obvious conclusions from the test?
Also, what would be in your opinion the most logical continuation of my diet?
Thanks for your help.
Marek
Marek,
I am guessing that you may be IgA deficient. With that much small intestinal damage, (relatively high fecal fat score), it is very likely that you have food sensitivities, but if you are are not able to produce IgA antibodies, then the tests can not detect any antibodies, (because your immune system is not capable of producing them).
Also, you have double DQ1 genes, (HLA-DQ 1,1 - Subtype 5,5), and people with double DQ genes virtually always have numerous food sensitivities, especially when they have double DQ1 genes.
Very low bile production can cause steatorrhea, (excess fat in the stool). If you have a gallbladder problem, (gallbladder disease), the absence of bile acids will cause the stool to turn gray or pale. It will also cause a lot of pain, just under the rib cage, especially, soon after eating, and the worst pain will usually last for several hours after eating. The pain can often be felt in back, also. If you think this could be the problem, you should ask your doctor to check out your gallbladder, and/or your gallbladder function. People with MC, are more likely than the general population to have gallbladder issues, and quite a few members here, have had their gallbladders removed. Also, if your gallbladder has already been removed, that can cause steatorrhea.
Pancreatitis, (an inflamed pancreas), can also cause steatorrhea, and low production, or availability, of pancreatic fluids, can also caused steatorrhea. Your doctor may need to check that out also.
Giardiasis can also cause steatorrhea, but that infection is usually picked up by drinking unsafe water, so you should know if that is a possibility
Also, you should ask your doctor to test you for IgA deficiency, because if you have IgA deficiency, the tests at Enterolab will not work for you. We have a couple of other members who are IgA deficent.
Tex
I am guessing that you may be IgA deficient. With that much small intestinal damage, (relatively high fecal fat score), it is very likely that you have food sensitivities, but if you are are not able to produce IgA antibodies, then the tests can not detect any antibodies, (because your immune system is not capable of producing them).
Also, you have double DQ1 genes, (HLA-DQ 1,1 - Subtype 5,5), and people with double DQ genes virtually always have numerous food sensitivities, especially when they have double DQ1 genes.
Very low bile production can cause steatorrhea, (excess fat in the stool). If you have a gallbladder problem, (gallbladder disease), the absence of bile acids will cause the stool to turn gray or pale. It will also cause a lot of pain, just under the rib cage, especially, soon after eating, and the worst pain will usually last for several hours after eating. The pain can often be felt in back, also. If you think this could be the problem, you should ask your doctor to check out your gallbladder, and/or your gallbladder function. People with MC, are more likely than the general population to have gallbladder issues, and quite a few members here, have had their gallbladders removed. Also, if your gallbladder has already been removed, that can cause steatorrhea.
Pancreatitis, (an inflamed pancreas), can also cause steatorrhea, and low production, or availability, of pancreatic fluids, can also caused steatorrhea. Your doctor may need to check that out also.
Giardiasis can also cause steatorrhea, but that infection is usually picked up by drinking unsafe water, so you should know if that is a possibility
Also, you should ask your doctor to test you for IgA deficiency, because if you have IgA deficiency, the tests at Enterolab will not work for you. We have a couple of other members who are IgA deficent.
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.
similar symptoms
Hi Marek,
I have similar symptoms that have made a diagnosis difficult. I do not have D, but abdominal pain, bloating, and gas. I've also started developing mental symptoms from different food intolerances (fatigue, head fog) that have been fairly overwhelming. Bananas was one off the first foods I started developing a moderate allergy to.
I have to be pretty strict on my diet to avoid symptoms and I'm currently talking 9 mg entocort/day. I'm starting to take a variety of supplements as suggested by a wikipedia article to deal with "leaky gut" (berberine, zinc, NAC, glutamine).
I have similar symptoms that have made a diagnosis difficult. I do not have D, but abdominal pain, bloating, and gas. I've also started developing mental symptoms from different food intolerances (fatigue, head fog) that have been fairly overwhelming. Bananas was one off the first foods I started developing a moderate allergy to.
I have to be pretty strict on my diet to avoid symptoms and I'm currently talking 9 mg entocort/day. I'm starting to take a variety of supplements as suggested by a wikipedia article to deal with "leaky gut" (berberine, zinc, NAC, glutamine).
I have sent my test results to my GI, just to see what he would say about the fat in the stool. he said, that this is not caused by intestinal damage, but by pancreas... And he said this test was not officially recognized, and that if I adopt a GF diet, I should consult a dietician to avoid malnutrition problems...
The only form of pancreas malfunction that would at least partly match my symptoms, would be the insuficient enzyme secretion, but this normally causes D, which I do not have. Therefore, I remain as confused as before... Do you think I have to consult a dietician? I cannot eat anything anyway...
The only form of pancreas malfunction that would at least partly match my symptoms, would be the insuficient enzyme secretion, but this normally causes D, which I do not have. Therefore, I remain as confused as before... Do you think I have to consult a dietician? I cannot eat anything anyway...
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Marek given the nature of the dietary restrictions and changes, I would consult a dietitian or nutritionist to look over your diet plan. I have talked to both a nutritionist in June and recently a dietitian to review my paleo like diet and they both suggested increasing my vitamin C and B complex levels on top of a multivitamin that I take. I am also taking vitamin D for a chronic low vitamin D level.
With these changes its important that we know that our bodies are getting the proper nutrition.
Best of luck Marek
--Joe
With these changes its important that we know that our bodies are getting the proper nutrition.
Best of luck Marek
--Joe
Joe
Gabes said
Rosie
When I was a kid, I remember that when anyone was sick or recovering, someone would make up a big pot of chicken feet soup. Wow, did that make a thick, gelatinous soup. It was believed that it had real curative powers, and I'll bet it did! Of course that was in the days when people had their own chickens running around the farm. Kind of hard to find chicken feet in the grocery store these days......I also make my own stock from boiling bones etc to get the natural gelatine which was used in medieval times for leaky gut.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Marek,
I've never felt that going GF lowered the nutrition in my diet. If anything, my nutrition was probably better after going GF. I no longer was eating donuts, many desserts, etc. My present diet, lacking fruit and most vegetables, concerns me so I take supplements.
If you're concerned about the nutrition you're getting, it wouldn't hurt to talk to a dietician to see if he/she can point out deficiencies.
Gloria
I've never felt that going GF lowered the nutrition in my diet. If anything, my nutrition was probably better after going GF. I no longer was eating donuts, many desserts, etc. My present diet, lacking fruit and most vegetables, concerns me so I take supplements.
If you're concerned about the nutrition you're getting, it wouldn't hurt to talk to a dietician to see if he/she can point out deficiencies.
Gloria
You never know what you can do until you have to do it.
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Gloria I certainly agree that eating GF with whole foods can be quite healthy.
To clarify somewhat, in my case I found that I can no longer have any raw veggies or fruits, with that content out of my diet I did want to talk to a dietitian to ensure that the diet and supplements I was taking would provide adequate nutrition. Certainly eating just GF with better quality foods could be an incredibly healthy diet.
--Joe
To clarify somewhat, in my case I found that I can no longer have any raw veggies or fruits, with that content out of my diet I did want to talk to a dietitian to ensure that the diet and supplements I was taking would provide adequate nutrition. Certainly eating just GF with better quality foods could be an incredibly healthy diet.
--Joe
Joe