I FINALLY got the results back on the stool test which tested for secretory or osmotic D. It came back osmotic. He said it was the highest level he had ever seen. He said MCers generally test at 300-350, mine was 660. Whatever that really means. He said that something I am putting in my mouth is causing my problems! He told me to contact a nutritionist and figure it out. I did and she got the brainy idea to have me drink these nutritional drinks from the hospital that is already predigested. She said it was ok that it was made from milk, because it was elemental. Well, you can probably guess, it made me sick. She tried another one and it tasted so bad - like bad chicken broth. It was a good idea in theory - my stomach would absorb it and my gut would heal. I'm on an elimination diet now. I am losing weight. Down to 99. I am trying to eat as much as I can, but without any grain or white potato, etc. I am so hungry all the time. Meat and the veggies and most fruits don't have many calories. Any suggestions?
They drew blood to check my nutrition. They will retest for lactose intolerance on Wed. and then next Wed. do a H2 breath test. What else should I suggest? The nutritionist wants me to do skin testing with an allergist.
I have been seriously off gluten for 2 1/2 months maybe 3. Is it too late for Dr. Fine's testing? I know I have have had some inadvertant wheat from eating at other peoples houses and had meat marinated in teriyaki sauce. Things like that.
Pat
Definitely food intolerance!
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Pat,
Sorry to hear of your latest problems. This is just my opinion, but I believe that your nutritionist doesn't have the foggiest idea how to help someone with the type of food intolerances that MCers have. Elemental milk is still a milk product, and it will almost certainly contain casein. Your nutritionist probably thinks it is safe because in addition to being lactose-free, the protein has been hydrolysed, so that it is considered to be "non-allergenic". Unfortunately, that's not enough, because the casein is probably still there. The only way it would be safe, is if it were broken down all the way to the basic amino acid form, and hydrolyzation doesn't normally do that.
Skin testing will not provide you with any worthwhile information, because those tests normally rely on a histamine reaction to indicate a sensitivity. While histamine reactions will certainly indicate the risk of classic allergy reactions, that might result in respiratory distress, and/or anaphylactic shock, they are of no value in detecting the type of food intolerances that most of us have to deal with.
Stool testing at Enterolabs is your best bet for getting reliable test results that will answer your questions definitively. Gluten antibodies can be detected by a stool test, for at least a year after gluten has been 100% removed from your diet.
I'm not aware of any nutritional drink that most MCers can safely drink. Most of them have an ingredient list as long as your arm, and even though I tried one or two that "should have been safe", according to the label, they all made me sick. Anything with an ingredient list that is longer than just a few ingredients, will almost always cause problems for MCers with multiple food intolerances.
To keep my weight up, when I was healing, I ate a lot of fatty meat, (such as pork). I also ate potatoes every day, and sometimes rice. I don't recall why you are not eating potatoes, but I don't believe there are more than one or two of us on this board, who cannot safely eat themd, (unless we're fighting a candida overgrowth problem). Also, very, very few people cannot safely eat rice, and rice is a good source of calories. I don't recall anyone here being intolerant of maple sugar, either, but if the reason you're avoiding potatoes is because of a yeast overgrowth, then rice and maple sugar will obviously be off limits, also.
If you are eating food that friends and neighbors prepare, then yes, it is very, very likely that you are continuing to ingest gluten. Until you get all the gluten out of your diet, and keep it out for an extended period of time, (months, not just days), it will probably be impossible to tell what you are reacting to, because your gut needs to heal from the gluten damage. It took mine over a hear to heal, and my small intestine still showed damage, (by a fecal fat test at Enterolab), over three years after I cut all gluten out of my diet.
Maybe someone else will have some good diet suggestions.
Tex
Sorry to hear of your latest problems. This is just my opinion, but I believe that your nutritionist doesn't have the foggiest idea how to help someone with the type of food intolerances that MCers have. Elemental milk is still a milk product, and it will almost certainly contain casein. Your nutritionist probably thinks it is safe because in addition to being lactose-free, the protein has been hydrolysed, so that it is considered to be "non-allergenic". Unfortunately, that's not enough, because the casein is probably still there. The only way it would be safe, is if it were broken down all the way to the basic amino acid form, and hydrolyzation doesn't normally do that.
Skin testing will not provide you with any worthwhile information, because those tests normally rely on a histamine reaction to indicate a sensitivity. While histamine reactions will certainly indicate the risk of classic allergy reactions, that might result in respiratory distress, and/or anaphylactic shock, they are of no value in detecting the type of food intolerances that most of us have to deal with.
Stool testing at Enterolabs is your best bet for getting reliable test results that will answer your questions definitively. Gluten antibodies can be detected by a stool test, for at least a year after gluten has been 100% removed from your diet.
I'm not aware of any nutritional drink that most MCers can safely drink. Most of them have an ingredient list as long as your arm, and even though I tried one or two that "should have been safe", according to the label, they all made me sick. Anything with an ingredient list that is longer than just a few ingredients, will almost always cause problems for MCers with multiple food intolerances.
To keep my weight up, when I was healing, I ate a lot of fatty meat, (such as pork). I also ate potatoes every day, and sometimes rice. I don't recall why you are not eating potatoes, but I don't believe there are more than one or two of us on this board, who cannot safely eat themd, (unless we're fighting a candida overgrowth problem). Also, very, very few people cannot safely eat rice, and rice is a good source of calories. I don't recall anyone here being intolerant of maple sugar, either, but if the reason you're avoiding potatoes is because of a yeast overgrowth, then rice and maple sugar will obviously be off limits, also.
If you are eating food that friends and neighbors prepare, then yes, it is very, very likely that you are continuing to ingest gluten. Until you get all the gluten out of your diet, and keep it out for an extended period of time, (months, not just days), it will probably be impossible to tell what you are reacting to, because your gut needs to heal from the gluten damage. It took mine over a hear to heal, and my small intestine still showed damage, (by a fecal fat test at Enterolab), over three years after I cut all gluten out of my diet.
Maybe someone else will have some good diet suggestions.
Tex
Thanks for responding, Tex. I think you are absolutely right about the nutritional drinks. I am so much worse since I took Neomycin and Prednisone and Entocort that I do think I must be fighting Candida. I am taking a probiotic, VSL #3. So far I have not been able to get the Dr. to test for it. I use to take 2 -4 imodium per day. Now I take 9 and still have explosive watery D. I am going to order Dr. Fine's tests right now!
Thanks again.
Oh, I am cooking all my own food now. I take it with me in a little cooler. I have to! Also I called Enterolab and they discouraged me from the tests. She told me to call a nutritionist is Colorado because the one in Dallas was on vacation for a month. I called and left a message but no response yet.
Pat
Thanks again.
Oh, I am cooking all my own food now. I take it with me in a little cooler. I have to! Also I called Enterolab and they discouraged me from the tests. She told me to call a nutritionist is Colorado because the one in Dallas was on vacation for a month. I called and left a message but no response yet.
Pat
It's surprising how well Prednisone and/or Entocort work for some people, but not at all for others.
Preparing all your own food should eliminate any question about what you are eating, and should help a lot, in the long run.
I've had someone at Enterolab talk me out of having some tests done, too. That kind of surprised me when it happened, because they don't make any money if they don't sell any tests. No one can accuse them of trying to gouge their customers. They're a class act, even though they deal in a rather "unclassy" commodity. LOL.
I'll bet the nutritionists they recommend will get the job done right. Good luck.
Tex
Preparing all your own food should eliminate any question about what you are eating, and should help a lot, in the long run.
I've had someone at Enterolab talk me out of having some tests done, too. That kind of surprised me when it happened, because they don't make any money if they don't sell any tests. No one can accuse them of trying to gouge their customers. They're a class act, even though they deal in a rather "unclassy" commodity. LOL.
I'll bet the nutritionists they recommend will get the job done right. Good luck.
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 Pat,
I'm not sure exactly what you are referring to with the panel tests, but in their "Information About Tests Performed by Enterolab" discussion, they list:
Please let us know what your results are. You should get the results, (by email), in slightly less than two weeks, if they are on their "normal" schedule.
Tex
I'm not sure exactly what you are referring to with the panel tests, but in their "Information About Tests Performed by Enterolab" discussion, they list:
I would assume that wherever you read that, they were probably just referring to the fact that the "Gluten Sensitivity Stool Panel Complete" option is listed after the "Gluten Sensitivity Stool and Gene Panel Complete" option. Only one of those panels of tests should be necessary. You shouldn't need to redo it later, unless you have a reason to want to check to see if you are accidentally getting some gluten in your diet, at some later time. With the one you ordered, you also get a free milk intolerance test.Test Panels
Gluten Sensitivity Stool and Gene Panel Complete
Gluten Sensitivity Stool Panel Complete
Egg, Yeast, Soy Sensitivity Stool Panel
Please let us know what your results are. You should get the results, (by email), in slightly less than two weeks, if they are on their "normal" schedule.
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 Pat!
You are sounding more like me every day! I was the original multi-intolerant one here, and I still have more intolerances than almost anyone. However, the good news is that as long as I avoid all of them, I remain in complete remission.
You have found the secret! Making/taking your own natural food. I am convinced it is the healthiest way to eat - just pure, unadulterated (unprocessed) food. No more cellophane bags or things in cardboard boxes or canned soups or gravy/sauces, etc. It does take longer to shop and prepare everything from scratch, but it becomes easier with time. I forget, have you read Cordain's book on the Paleo Diet yet?
Can you eat eggs? I did for some time but then started reacting to them (I was eating them every other day - now I eat them less). If you can, you can eat hard-boiled eggs or devilled eggs (GF ones like Hellman's or Kraft). Other high calorie snacks are nuts, avocado or guacamole, olives, nut butters. Sweet potatoes are great (they are not in the nightshade category like regular potatoes). You can nuke them and mix them with maple syrup and nuts/raisins. How about dried fruit - they are hi-cal.
Good luck.
Love,
Polly
You are sounding more like me every day! I was the original multi-intolerant one here, and I still have more intolerances than almost anyone. However, the good news is that as long as I avoid all of them, I remain in complete remission.
You have found the secret! Making/taking your own natural food. I am convinced it is the healthiest way to eat - just pure, unadulterated (unprocessed) food. No more cellophane bags or things in cardboard boxes or canned soups or gravy/sauces, etc. It does take longer to shop and prepare everything from scratch, but it becomes easier with time. I forget, have you read Cordain's book on the Paleo Diet yet?
Can you eat eggs? I did for some time but then started reacting to them (I was eating them every other day - now I eat them less). If you can, you can eat hard-boiled eggs or devilled eggs (GF ones like Hellman's or Kraft). Other high calorie snacks are nuts, avocado or guacamole, olives, nut butters. Sweet potatoes are great (they are not in the nightshade category like regular potatoes). You can nuke them and mix them with maple syrup and nuts/raisins. How about dried fruit - they are hi-cal.
Good luck.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Pat, weight loss has been a big fear for me too. I'm already down 35 pounds and would rather not go further. I am on the dreaded low carb yeast diet right now, plus my naturopath took me off tomatoes, peanuts, onions and chocolate. Remove gluten, casein, soy, yeast and you can imagine what's left.
The thing that saves me is nuts. I'd prefer raw unsalted nuts, but I can eat a lot more roasted, salted.
My doc thinks you either treat aggressively or not at all, and the aggressive part is really difficult. I don't think I would do it without getting tested for yeast first.
The thing that saves me is nuts. I'd prefer raw unsalted nuts, but I can eat a lot more roasted, salted.
My doc thinks you either treat aggressively or not at all, and the aggressive part is really difficult. I don't think I would do it without getting tested for yeast first.
No Gluten,casein,soy,eggs,yeast
I've been reading about Fructose Malabsorption. It is one of the tests they will do next week. This sounds like me! It apparently is very common. I am going to try to talk them into doing the test this week instead of the lactose intolerance test. I woke up starving, that is why I am posting at 4 am. 
I weighed myself and am down to 98.5. I don't like this. I ate some meat and rice. I decided to try rice. I am starving. I will have more meat and an avocado and more rice for breakfast.
I have been eating sweet potatoes and have been having watery orange D so I don't think I am tolerating them.
Thank you all for your support!
Pat
I weighed myself and am down to 98.5. I don't like this. I ate some meat and rice. I decided to try rice. I am starving. I will have more meat and an avocado and more rice for breakfast.I have been eating sweet potatoes and have been having watery orange D so I don't think I am tolerating them.
Thank you all for your support!
Pat
Hi Pat,
I can relate to the orange D ...had the same thing when I ate sweet potatoes. I found that pancreatic enzymes helped me to digest my food better.
I can also relate to the weight loss ...was down to 103...way too thin for my height. It is scary when this happens. I felt like I was starving as well. I think I was having problems with fructose as well. Mike recommended a book...A New IBS Solution by Mark Pimentel, and I found it to have some great information. Most interesting was the info that the bad gut overgrowth is towards the end of the small intestine and that fructose and lactose are hard to digest so they end up needing the full length of the small intestine to digest them and so end up feeding the bad bacteria. Pure sugar on the other hand is digested in the first two feet of the small intestine and is completely absorbed before it reaches the bad bacteria. I know this doesn't sound healthy but I have been able to gain 5 lbs by cutting out fruit and sprinkling sugar on my food at meals. I did this after both a blood and stool test came back negative for yeast. I know it sounds crazy but it seems to be helping me.
It sounds like you are getting some good tests and will soon have some answers to guide you. Hang in there Pat.
Love,
Cristi
I can relate to the orange D ...had the same thing when I ate sweet potatoes. I found that pancreatic enzymes helped me to digest my food better.
I can also relate to the weight loss ...was down to 103...way too thin for my height. It is scary when this happens. I felt like I was starving as well. I think I was having problems with fructose as well. Mike recommended a book...A New IBS Solution by Mark Pimentel, and I found it to have some great information. Most interesting was the info that the bad gut overgrowth is towards the end of the small intestine and that fructose and lactose are hard to digest so they end up needing the full length of the small intestine to digest them and so end up feeding the bad bacteria. Pure sugar on the other hand is digested in the first two feet of the small intestine and is completely absorbed before it reaches the bad bacteria. I know this doesn't sound healthy but I have been able to gain 5 lbs by cutting out fruit and sprinkling sugar on my food at meals. I did this after both a blood and stool test came back negative for yeast. I know it sounds crazy but it seems to be helping me.
It sounds like you are getting some good tests and will soon have some answers to guide you. Hang in there Pat.
Love,
Cristi