help!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
help!!
I haven't come on in a while because I decided this site was making me more depressed. Everyone sounded so bad and no one seemed to be getting better. I was determined not to be like that. Now though I am at my wits end. I have been off of gluten, soy, legumes and dairy (just started scd recently so added some allowed dairys) for 5 months and have found no releif. I keep on getting worse. i did the enerolab testing and only came back with slight elevated antibodies against gluten and corn which i've been off for monthes. My stomach pain has gotten progressively worse and at times is unbearable. I still have joint pain which does not bother me as much as the stomach pain. I was on entecort for almost three months and even the bowel movements were still 3-4 times a day and i still had tremendous pain. I took another colonoscopy which showed that there was no inflamation on the biopsies anymore so my dr. says the pain is just from my intestines being sensitive from everything they've been through. I switched to a new dr. b/c this past one did not seem to care about my pain. he gave me some antispasmatics but they did not help. i am now on a short term doese of prednisone and then will switch to entecort again and i am on Belladona for the pain. Nothing is helping though. I felt ok, the first few days on the prednisone and then the excruciating pain came right back. I was on scd for 6 weeks in the wintr and did not feel any better. I am trying it again and this time plan on giving it 3 months to see if it helps. People told me that they needed at least 3 months to start seeing change. i hope that is true b/c i am on the verge of collapse. i am only 30 years old and have young children who need me. I don't want to leave them orphans but sometimes i feel like i can not take this life of pain any longer. I tried MRT testing and did not find it helpful. They were telling me to eat peanut butter b/c i had no reaction to it on the test but of course my intestines could not digest legumes. It was ridiculous to eat these foods that are hard to digest just b/c my blood showed no reaction. If any one has any other ideas that can help me I would appreciate it. I have been in this flair since I had a miscarrige in November and I can not get out of it. Before the flair when I was first diagnosed I seemed to get better right away and was managing fine with only mild pain. I don't know why i can't get back to that point. I have been trying to use mental imagry as well to try and heal. Something has to give soon or I will break! Help!
Belle
Hi Belle,
I am so sorry that you have been suffering and unable to find relief for your pain and fatigue. When we are in pain, and exhausted, it's hard to see any positive; all we want to do is make the pain stop and get some sleep, which we need so much to recover. Having small children to look after doesn't give you much time to rest/recoup some energy. Do you have family or friends nearby who can take the kids to give you an occasional break?
I see that you live in NJ. Maybe you could investigate seeing a GI specialist in NYC or Philadelphia. It sounds like whoever you're seeing doesn't know what to do for you. Others on this board have mentioned MT. Sinai hospital in NYC as having a good GI department. If you're in South Jersey, I'm sure HUP or Hahnemann in Philly might also.
A couple of things in your post about how despondent you are, are very concerning. I will tell you that I did see a therapist in the early days of LC, which helped. and I was not dealing with anything like the level of pain, both physical and emotional, that you describe. Please act quickly to find some help.
You say that you stopped coming on the board for a time because you were finding it to be too much of. A downer. If you look just a couple of posts below your on the Main Message Board, you will see a post from someone who is improving, and maybe you want to take a look at it.
Last, you mention that you have been eating some dairy. That almost always gives me burning, cramping pain in the belly if I inadvertently eat it. Maybe it's not good to eat it
for now.
I can tell by your post that you are feeling a total lack of control over your issues. I'm sure you will hear from others who have had severe pain issues about what they did to try to regain some control. But I just wanted you to hear back from someone quickly.
I am so sorry that you have been suffering and unable to find relief for your pain and fatigue. When we are in pain, and exhausted, it's hard to see any positive; all we want to do is make the pain stop and get some sleep, which we need so much to recover. Having small children to look after doesn't give you much time to rest/recoup some energy. Do you have family or friends nearby who can take the kids to give you an occasional break?
I see that you live in NJ. Maybe you could investigate seeing a GI specialist in NYC or Philadelphia. It sounds like whoever you're seeing doesn't know what to do for you. Others on this board have mentioned MT. Sinai hospital in NYC as having a good GI department. If you're in South Jersey, I'm sure HUP or Hahnemann in Philly might also.
A couple of things in your post about how despondent you are, are very concerning. I will tell you that I did see a therapist in the early days of LC, which helped. and I was not dealing with anything like the level of pain, both physical and emotional, that you describe. Please act quickly to find some help.
You say that you stopped coming on the board for a time because you were finding it to be too much of. A downer. If you look just a couple of posts below your on the Main Message Board, you will see a post from someone who is improving, and maybe you want to take a look at it.
Last, you mention that you have been eating some dairy. That almost always gives me burning, cramping pain in the belly if I inadvertently eat it. Maybe it's not good to eat it
for now.
I can tell by your post that you are feeling a total lack of control over your issues. I'm sure you will hear from others who have had severe pain issues about what they did to try to regain some control. But I just wanted you to hear back from someone quickly.
Suze
Hi Belle,
Sorry to hear of all your problems, and I'm sorry to hear that you feel that the atmosphere on this board is depressing. We try to avoid that, because attitude definitely has an effect on controlling this disease. The reason why attitude is so important is because if we don't go far enough with our diet restrictions, and we don't carefully stick with them long enough, we won't reach remission, and attitude governs our ability to persevere, especially when things aren't going well.
I agree with what Suze said, and in addition I would like to point out that hormonal imbalances can cause us to feel the way that you are feeling, regarding despondency. Have you had your hormone levels checked lately? Pregnancy can cause major hormone shifts, and those hormone levels change with time. I wonder if some of your hormones may not have returned to normal levels after the miscarriage. If so, that could be the source of your problem. Hormones can definitely have a major effect on MC.
Also, if you want to steer away from depression, and gain a more optimistic outlook, read some of the success stories of members here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=71
It appears that meds are not going to work for you, and your doctors seem to have used all the standard prescription options that they have available, so I believe it's pretty clear that diet will be your best choice for controlling the disease. If I were in your shoes, instead of trying to follow some "one-size-fits-all" diet, I would do what most of us here who are successfully in remission have done -- develop your own diet of foods that you feel are safe, and stick with it, fine-tuning it whenever needed. Forget the dietitian's recommendations. Utilize the information that you received in the EnteroLab results to avoid problem foods, and use the guidelines provided by the MRT results to eliminate any other foods that may be a problem. Carefully test the "green" MRT foods to see if they cause you to react, before you classify them as "safe". The "yellows" and especially the "reds" should probably be avoided without even trying them.
As the tag lines of several members point out (in various versions), remember that successful people learn from their failures. They see their problems as challenges and their failures as educational tools, and they use them as stepping stones to work their way to the top. On the other hand, people who view failures as discouraging events, and don't learn from them, often quit trying, because they consider the situation hopeless. With this disease, we can't afford to be pessimistic, because that can become a self-fulfilling prophecy.
The key to remission is somewhere inside you -- you just have to find it. Clearly, your doctors are not likely to help you find it. We'll help you in any way we can. Just continue to ask questions, because sooner or later, one of those answers may hold the key that you are searching for, and it will turn on a light bulb that will allow you to see the problem more clearly.
I tried to look up your EnteroLab test results, but I don't see them listed. A good first step would be to list those test results, so that we have something solid to base our recommendations on.
Tex
Sorry to hear of all your problems, and I'm sorry to hear that you feel that the atmosphere on this board is depressing. We try to avoid that, because attitude definitely has an effect on controlling this disease. The reason why attitude is so important is because if we don't go far enough with our diet restrictions, and we don't carefully stick with them long enough, we won't reach remission, and attitude governs our ability to persevere, especially when things aren't going well.
I agree with what Suze said, and in addition I would like to point out that hormonal imbalances can cause us to feel the way that you are feeling, regarding despondency. Have you had your hormone levels checked lately? Pregnancy can cause major hormone shifts, and those hormone levels change with time. I wonder if some of your hormones may not have returned to normal levels after the miscarriage. If so, that could be the source of your problem. Hormones can definitely have a major effect on MC.
Also, if you want to steer away from depression, and gain a more optimistic outlook, read some of the success stories of members here:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=71
It appears that meds are not going to work for you, and your doctors seem to have used all the standard prescription options that they have available, so I believe it's pretty clear that diet will be your best choice for controlling the disease. If I were in your shoes, instead of trying to follow some "one-size-fits-all" diet, I would do what most of us here who are successfully in remission have done -- develop your own diet of foods that you feel are safe, and stick with it, fine-tuning it whenever needed. Forget the dietitian's recommendations. Utilize the information that you received in the EnteroLab results to avoid problem foods, and use the guidelines provided by the MRT results to eliminate any other foods that may be a problem. Carefully test the "green" MRT foods to see if they cause you to react, before you classify them as "safe". The "yellows" and especially the "reds" should probably be avoided without even trying them.
As the tag lines of several members point out (in various versions), remember that successful people learn from their failures. They see their problems as challenges and their failures as educational tools, and they use them as stepping stones to work their way to the top. On the other hand, people who view failures as discouraging events, and don't learn from them, often quit trying, because they consider the situation hopeless. With this disease, we can't afford to be pessimistic, because that can become a self-fulfilling prophecy.
The key to remission is somewhere inside you -- you just have to find it. Clearly, your doctors are not likely to help you find it. We'll help you in any way we can. Just continue to ask questions, because sooner or later, one of those answers may hold the key that you are searching for, and it will turn on a light bulb that will allow you to see the problem more clearly.
I tried to look up your EnteroLab test results, but I don't see them listed. A good first step would be to list those test results, so that we have something solid to base our recommendations on.
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.
Belle,
Did you ever get the time to grieve the loss of your baby and pregnancy? Seems like situations are kicking you when you are down. I've also suffered the loss of a pregnancy (our baby passed away during the sixth month of pregnancy) and it is devastating. Many people don't want to talk about it with you and in fact will try to minimize the loss by saying "you have other kids" or 'it just wasn't meant to be".
I'm not suggesting this is responsible for your entire problem, but if we can dissect things and break them down into manageable pieces, this could be an area that is "piling on" and aggravating your health issues.
Do try to reduce your overwhelm and see if others can take your kids for a day. And I agree with the others-- hormones can really wreak havoc on a number of things. That might be a good place to start too.
I'm sorry you saw this site as negative. Granted we do tend to post when we are having problems, but I see it as group problem solving. In fact I'm getting ready to post a question to the group when I'm done here.
Please hang in there. I do agree it's time to seek medical help from another source if you are not getting what you want.
Carol
Did you ever get the time to grieve the loss of your baby and pregnancy? Seems like situations are kicking you when you are down. I've also suffered the loss of a pregnancy (our baby passed away during the sixth month of pregnancy) and it is devastating. Many people don't want to talk about it with you and in fact will try to minimize the loss by saying "you have other kids" or 'it just wasn't meant to be".
I'm not suggesting this is responsible for your entire problem, but if we can dissect things and break them down into manageable pieces, this could be an area that is "piling on" and aggravating your health issues.
Do try to reduce your overwhelm and see if others can take your kids for a day. And I agree with the others-- hormones can really wreak havoc on a number of things. That might be a good place to start too.
I'm sorry you saw this site as negative. Granted we do tend to post when we are having problems, but I see it as group problem solving. In fact I'm getting ready to post a question to the group when I'm done here.
Please hang in there. I do agree it's time to seek medical help from another source if you are not getting what you want.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Belle, I'm very sorry for your loss and cannot imagine how stressful this time has been for you. It does seem that you are having a rough time finding the right solution for you. As you read through this board you will note that it seems that a lot of people are struggling, but be careful, in that many post here only when they are struggling, not when they are doing well. Each of us has to find the way that works for us individually, while there are commonalities everyone is different and it does take some trial and error to figure that out.
I was an absolute mess when I first came to this board after I was finally Dxd with MC and Crohns. What works well for the MC does not always work other IBDs like Crohns. Along those lines has your GI done any blood tests to look for Crohns? About half of the cases of Crohns disease are not in the large intestine but further up in the small intestine. This is important because your GI doctor would not have been able to see or take biopsies in the areas of the small intestine where this might be occurring. Overall with the proper diagnosis now and a combination of meds and a careful diet I am doing quite well. This does not mean that there won't be occasional bumps in the road, but those I can deal with.
While the tests are useful, I find they don't tell the whole picture, like you Belle, I can supposedly 'tolerate' peanut butter, but I find it is tough on my system and does cause cramping if I have some especially if I am having a flare up. The tests are a good starting point, but just as you mentioned, listening to our bodies is key as they will tell us what is tolerated and what is not.
Belle for me when things are acting up I go back to the basics for a while which is what I did initially to help settle things down, I'm wondering if you might want to try this. What I do is more or less what you would so with a child that has had upset stomach for a while.
Much of this you may already know but here is what I found works:
Besides No Gluten, Soy or Dairy, my menu during these times is:
Boneless skinless chicken seasoned only with sea salt, a little pepper and I use a little rice bran oil.
Eggs if you tolerate them, preferably cooked with little or no butter. Use a good non stick pan
White rice
Quinoa
Apple sauce
Ripe bananas, if tolerated
Well cooked carrots (cooked until almost mushy)
Apple or white grape juice
Sweet potato with a bit of sea salt and a little rice bran oil if desired
No food made in a factory or any pre-packaged food (for a while)
No restaurant or take away foods (for a while)
No acidic juices like citrus juices (orange, grapefruit etc.)
No raw fruits or veggies
I do this for about a week, having several smaller meals throughout the day, as having more frequent smaller portions is easier on your system. The goal is to keep it simple with a minimal set of ingredients and it does work. After this I slowly add one food at a time back while avoiding things on the no list.
Certainly Belle I can more than understand your frustration as this can be hard at times. Tex is correct, if you can get a break to relax and try to catch up on some sleep it helps how well you can cope and as Suze mentioned I would seek another opinion potentially at one of the better groups. I ended changing doctors early on and I'm glad I did, as I would still not have a proper Dx which was causing damage that diet alone could not address at that time.
You should ask your doctor to run the simple blood test from Prometheus labs for other IBDs like Crohns as given the levels of pain you are experiencing that does make me suspicious. If your doctor said no Crohns or other IBDs were found during the colonoscopy, he's not doing his job as that will only look at half the picture.
Hang in there Belle, I hope you can get some rest try looking at a very simple diet for a while and soon you will be one of the success stories I'm sure. For many of us this is how things start, its not easy but it does get better. PLease feel free to talk things through here, this is the place to do just that
Take care
I was an absolute mess when I first came to this board after I was finally Dxd with MC and Crohns. What works well for the MC does not always work other IBDs like Crohns. Along those lines has your GI done any blood tests to look for Crohns? About half of the cases of Crohns disease are not in the large intestine but further up in the small intestine. This is important because your GI doctor would not have been able to see or take biopsies in the areas of the small intestine where this might be occurring. Overall with the proper diagnosis now and a combination of meds and a careful diet I am doing quite well. This does not mean that there won't be occasional bumps in the road, but those I can deal with.
While the tests are useful, I find they don't tell the whole picture, like you Belle, I can supposedly 'tolerate' peanut butter, but I find it is tough on my system and does cause cramping if I have some especially if I am having a flare up. The tests are a good starting point, but just as you mentioned, listening to our bodies is key as they will tell us what is tolerated and what is not.
Belle for me when things are acting up I go back to the basics for a while which is what I did initially to help settle things down, I'm wondering if you might want to try this. What I do is more or less what you would so with a child that has had upset stomach for a while.
Much of this you may already know but here is what I found works:
Besides No Gluten, Soy or Dairy, my menu during these times is:
Boneless skinless chicken seasoned only with sea salt, a little pepper and I use a little rice bran oil.
Eggs if you tolerate them, preferably cooked with little or no butter. Use a good non stick pan
White rice
Quinoa
Apple sauce
Ripe bananas, if tolerated
Well cooked carrots (cooked until almost mushy)
Apple or white grape juice
Sweet potato with a bit of sea salt and a little rice bran oil if desired
No food made in a factory or any pre-packaged food (for a while)
No restaurant or take away foods (for a while)
No acidic juices like citrus juices (orange, grapefruit etc.)
No raw fruits or veggies
I do this for about a week, having several smaller meals throughout the day, as having more frequent smaller portions is easier on your system. The goal is to keep it simple with a minimal set of ingredients and it does work. After this I slowly add one food at a time back while avoiding things on the no list.
Certainly Belle I can more than understand your frustration as this can be hard at times. Tex is correct, if you can get a break to relax and try to catch up on some sleep it helps how well you can cope and as Suze mentioned I would seek another opinion potentially at one of the better groups. I ended changing doctors early on and I'm glad I did, as I would still not have a proper Dx which was causing damage that diet alone could not address at that time.
You should ask your doctor to run the simple blood test from Prometheus labs for other IBDs like Crohns as given the levels of pain you are experiencing that does make me suspicious. If your doctor said no Crohns or other IBDs were found during the colonoscopy, he's not doing his job as that will only look at half the picture.
Hang in there Belle, I hope you can get some rest try looking at a very simple diet for a while and soon you will be one of the success stories I'm sure. For many of us this is how things start, its not easy but it does get better. PLease feel free to talk things through here, this is the place to do just that
Take care
Joe
Hi Belle,
I'm so sorry to hear of your frustration. It sure sounds like you've tried many of the recommended approaches without success. I assume you've already followed up with your OB/GYN, but are you sure the pain is not originating from the pelvic region? Was your miscarriage 100% complete? No weird bleeding episodes afterwards? Your periods are back to normal? In rare instances, retained products of conception could wreak havoc on your hormones and eventually lead to other problems, including pain.
I hope you get some relief soon. Have you ever tried Pepto Bismol tabs for symptoms? They calm things down a bit for me when I'm in a flare.
I'm so sorry to hear of your frustration. It sure sounds like you've tried many of the recommended approaches without success. I assume you've already followed up with your OB/GYN, but are you sure the pain is not originating from the pelvic region? Was your miscarriage 100% complete? No weird bleeding episodes afterwards? Your periods are back to normal? In rare instances, retained products of conception could wreak havoc on your hormones and eventually lead to other problems, including pain.
I hope you get some relief soon. Have you ever tried Pepto Bismol tabs for symptoms? They calm things down a bit for me when I'm in a flare.
Thanks for all your responses. The miscarriage happened about 5 months ago and things have definitely returned to normal. I had a DNC so there should not be anything left over. I do find my pain is worse around my period but that is definately not the only time i have pain. I am extrememly restricted in what i am eating but one day a food could be ok and the next day i will have pain from it. I just can't seem to get a grip on what to eat. I actually lately feel starving all the time b/c it is too painful to eat so i just don't bother. I am eating only chicken broth with well cooked carrots and boiled chicken. sometimes recently the homemade yogurt from the scd for the probiotics. I was off dairy till i started the scd recently. I never found going off dairy or gluten has helped. I'm still off the gluten and corn as came up in my enterolab testing but it has not helped. I wanted so hard to stay positive but when the pain comes it is impossible to feel positive. I got this disease after going on accutane so i'm wondering if that causes more damage then just getting it from stress. My life was perfectly fine and wonderful before all this happened. there was no major stress trigger.
Belle
enterolab results
Here are my enterolab results
A + C) Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel
(Combines Panels A and C at a discounted price)
Mean Value 11 Antigenic Foods 6 Units (Normal Range is less than 10 Units)
Fecal Anti-gliadin IgA 14 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 5 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 5 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 3 Units (Normal Range is less than 10 Units)
Interpretation of Mean Value 11 Antigenic Foods: A mean value of 6 Units indicates that overall, on average, your food sensitivity reactions are mild. However, there was some detectable evidence of immunologic sensitivity to one or more of these antigenic foods.
Many foods besides gluten, cow’s milk, eggs, and soy are antigenic in their own right; the main classes of which include other grains, meats, nuts, and nightshades (potatoes being the primary food eaten from this latter class). Minimizing exposure to antigenic foods is an important component of an anti-inflammatory lifestyle to optimize immune system health. This is especially important for those with chronic abdominal symptoms and/or chronic immune/autoimmune syndromes, or for those who want to prevent them.
For immunologic food sensitivity testing, the actual numeric value (in Units) for any given test or for the overall average of a group of foods is important mainly for determining: 1) if the immune reaction is present or absent, and 2) in relative terms, the immune reaction to different foods tested in a given individual at a given point in time. It is not a score, per se, to be interpreted as a measure of clinical or immunological severity for that individual or between individuals. This is because the amount of IgA antibody made by a given person is particular for the immune function of that person. Furthermore, sometimes a person can display what can be viewed as immunological and nutritional “exhaustion,” whereby a more significant and symptomatic immunologic food sensitivity is accompanied by a lower positive measured anti-food antibody value (rather than a higher positive). In such an instance, following clinical improvement and improved nutritional status (while the suspect antigenic foods are withdrawn), values can actually be higher for a time before finally falling into the negative range after several years.
Thus, the overall average food sensitivity antibody value for this panel is an assessment of your overall humoral immunologic food reactivity, which can help determine if dietary elimination trials may help you. If the mean value is less than 10 Units, the humoral immune reactions can be considered absent (negative); if greater than or equal to 10 Units, they can be considered present. Rather than reporting the absolute value of a positive result for each individual food, since it cannot be considered as an assessment of severity, the results are reported in relative terms between the foods tested. This provides you with the knowledge of which foods are stimulating the most immune response which, in turn, is indeed the most practically applied information to dietary elimination trials. The report information that follows is based on these facts.
While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:
Food toward which you displayed most immunologic reactivity: Corn
Food for which there was no significant immunologic reactivity: Beef, Rice, Walnut, Chicken, Oat, Almond, Tuna, White potato, Cashew, Pork
A + C) Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel
(Combines Panels A and C at a discounted price)
Mean Value 11 Antigenic Foods 6 Units (Normal Range is less than 10 Units)
Fecal Anti-gliadin IgA 14 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 5 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 5 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 3 Units (Normal Range is less than 10 Units)
Interpretation of Mean Value 11 Antigenic Foods: A mean value of 6 Units indicates that overall, on average, your food sensitivity reactions are mild. However, there was some detectable evidence of immunologic sensitivity to one or more of these antigenic foods.
Many foods besides gluten, cow’s milk, eggs, and soy are antigenic in their own right; the main classes of which include other grains, meats, nuts, and nightshades (potatoes being the primary food eaten from this latter class). Minimizing exposure to antigenic foods is an important component of an anti-inflammatory lifestyle to optimize immune system health. This is especially important for those with chronic abdominal symptoms and/or chronic immune/autoimmune syndromes, or for those who want to prevent them.
For immunologic food sensitivity testing, the actual numeric value (in Units) for any given test or for the overall average of a group of foods is important mainly for determining: 1) if the immune reaction is present or absent, and 2) in relative terms, the immune reaction to different foods tested in a given individual at a given point in time. It is not a score, per se, to be interpreted as a measure of clinical or immunological severity for that individual or between individuals. This is because the amount of IgA antibody made by a given person is particular for the immune function of that person. Furthermore, sometimes a person can display what can be viewed as immunological and nutritional “exhaustion,” whereby a more significant and symptomatic immunologic food sensitivity is accompanied by a lower positive measured anti-food antibody value (rather than a higher positive). In such an instance, following clinical improvement and improved nutritional status (while the suspect antigenic foods are withdrawn), values can actually be higher for a time before finally falling into the negative range after several years.
Thus, the overall average food sensitivity antibody value for this panel is an assessment of your overall humoral immunologic food reactivity, which can help determine if dietary elimination trials may help you. If the mean value is less than 10 Units, the humoral immune reactions can be considered absent (negative); if greater than or equal to 10 Units, they can be considered present. Rather than reporting the absolute value of a positive result for each individual food, since it cannot be considered as an assessment of severity, the results are reported in relative terms between the foods tested. This provides you with the knowledge of which foods are stimulating the most immune response which, in turn, is indeed the most practically applied information to dietary elimination trials. The report information that follows is based on these facts.
While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:
Food toward which you displayed most immunologic reactivity: Corn
Food for which there was no significant immunologic reactivity: Beef, Rice, Walnut, Chicken, Oat, Almond, Tuna, White potato, Cashew, Pork
Belle
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Accutane 
Belle be sure to mention that you took Accutane to your doctor, hopefully he reviewed your record carefully enough, as that has been shown the exacerbated pre-existing cases of Crohns and Ulcerative Colitis and as several studies are now showing it has been the trigger for the start of those diseases.
http://www.crohnsforum.com/wiki/Accutane
I am a member of this board and a few other boards and it seems that Accutane is mentioned there as much as we mention gluten here. As you may be aware Roche the manufacturer of Accutane has been sued dover a hundred times and the plaintiffs have been awarded significant damages as the evidence clearly shown the link between Accutane and newly diagnosed or exacerbated IBD's
http://www.pharmalot.com/2008/04/roche- ... ane-trial/
To me this is a red flag to ask for the blood tests at least to help clarify the possibility of small bowel involvement, especially given the levels of pain you are experiencing.
Take care
Belle be sure to mention that you took Accutane to your doctor, hopefully he reviewed your record carefully enough, as that has been shown the exacerbated pre-existing cases of Crohns and Ulcerative Colitis and as several studies are now showing it has been the trigger for the start of those diseases.
http://www.crohnsforum.com/wiki/Accutane
I am a member of this board and a few other boards and it seems that Accutane is mentioned there as much as we mention gluten here. As you may be aware Roche the manufacturer of Accutane has been sued dover a hundred times and the plaintiffs have been awarded significant damages as the evidence clearly shown the link between Accutane and newly diagnosed or exacerbated IBD's
http://www.pharmalot.com/2008/04/roche- ... ane-trial/
To me this is a red flag to ask for the blood tests at least to help clarify the possibility of small bowel involvement, especially given the levels of pain you are experiencing.
Take care
Joe
Yep, 
with Joe and Zizzle also. Accutane changes the picture drastically.
Many/most doctors are a lot like DOT cops who stop a truck on the highway to check for violations. If the truck is overloaded, they will almost always write out a ticket for the overload and never bother to note the clearance lamp that is burned out, or a worn tire on the trailer, etc. If the truck is not overloaded, then they will look for some other violation, and write a ticket for that. The point is, once they have a reason to write a ticket, they are happy, and so is their supervisor and the truck driver, and so most (not all) of them will stop looking for other problems, once they pick a good one on which to base a citation. They may warn the driver about the other violations that are obvious, but the ticket will only mention the violation that ranks the highest in their personal hierarchy of reasons to write a ticket.
Doctors do the same thing. Once they manage to diagnose a GI disease, they rarely look any further, unless the patient gives them some reason to look further. As Joe mentioned, jejunal Crohn's disease is a strong possibility, in view of your history with Accutane.
Thanks for listing your EnteroLab test results. I trust you won't mind if I add those to our list. If you would rather that I didn't add them to the list, please let me know, and I'll promptly delete them.
Those test results confirm that your food sensitivities appear to be minimal (assuming that you were eating all those foods before sending the stool sample, and assuming that you do not have selective IgA deficiency). Because of that, I agree that in view of your lack of success despite severe diet restrictions, something else is dominating your symptoms, and while it may be hormonal, the highest odds (IMO) suggest Crohn's in the mid to upper small intestine. If you had UC, that should have been obvious during the colonoscopy, since UC affects the distal colon and rectum first, and propagates backwards from there.
Good luck with this. You may need to change GI docs if you can't get a diagnosis from your present specialist, and you may want to pursue an Accutane settlement, to help pay the bills, and to compensate for the hardships that it may have caused.
Tex
with Joe and Zizzle also. Accutane changes the picture drastically. Many/most doctors are a lot like DOT cops who stop a truck on the highway to check for violations. If the truck is overloaded, they will almost always write out a ticket for the overload and never bother to note the clearance lamp that is burned out, or a worn tire on the trailer, etc. If the truck is not overloaded, then they will look for some other violation, and write a ticket for that. The point is, once they have a reason to write a ticket, they are happy, and so is their supervisor and the truck driver, and so most (not all) of them will stop looking for other problems, once they pick a good one on which to base a citation. They may warn the driver about the other violations that are obvious, but the ticket will only mention the violation that ranks the highest in their personal hierarchy of reasons to write a ticket.
Doctors do the same thing. Once they manage to diagnose a GI disease, they rarely look any further, unless the patient gives them some reason to look further. As Joe mentioned, jejunal Crohn's disease is a strong possibility, in view of your history with Accutane.
Thanks for listing your EnteroLab test results. I trust you won't mind if I add those to our list. If you would rather that I didn't add them to the list, please let me know, and I'll promptly delete them.
Those test results confirm that your food sensitivities appear to be minimal (assuming that you were eating all those foods before sending the stool sample, and assuming that you do not have selective IgA deficiency). Because of that, I agree that in view of your lack of success despite severe diet restrictions, something else is dominating your symptoms, and while it may be hormonal, the highest odds (IMO) suggest Crohn's in the mid to upper small intestine. If you had UC, that should have been obvious during the colonoscopy, since UC affects the distal colon and rectum first, and propagates backwards from there.
Good luck with this. You may need to change GI docs if you can't get a diagnosis from your present specialist, and you may want to pursue an Accutane settlement, to help pay the bills, and to compensate for the hardships that it may have caused.
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 know for sure I got the disease b/c of the accutane and the doctors admit it to.o I will regret taking it for the rest of my life. it ruined my life.. I trusted the dr. who gave it to me and did not look carefully in to the side effects. I had been dealing with cystic acne for over 10 years and had enough. I just wanted to get rid of it. The dr.s don't think the reason i got it would cause more problems then if someone got the disease out of the blue. They did every test possible to make sure it is not chron's. They did suspect that all along as my sister has chrohn's (she never took any drugs, she got it out of the blue) however, everything came back negative. I took a capsule endoscopy, colonscopy, upper endoscopy and tons of blood work and i can't remember what else. i think all these tests put me in to the flair in the first place b/c i was also having tests done to see why i have had repeated miscarriages (4 misses- three b4 accutane and this diagnosis). I know people here have said they have endomitriosis, did that come b4 this disease or after? i definately never had it b4 but am wondering now if it is a player in my pain. Although i seem to get pain after i eat and at any time of the month. I am on birth control now as i'm not allowed to get pregnant yet. I feel like the pain is randomly any time so i just don't know. I took the pepto bismol route at the begining and it did help me somewhat although i still had pain while i was on it. since this flair though i have not been able to get anything under control. the pain has become unbearable everyday.
Belle
Our informal poll shows that the members of this board are at least 4 times as likely as someone in the general population to develop endometriosis. PCOS is also associated with the disease.
http://www.perskyfarms.com/phpBB2/viewt ... viewresult
We are also more likely to develop intestinal adhesions, but there's no simple way to do a poll on that, since the only way to discover it is by means of surgery, and surgery causes followup adhesions. There's something about the disease that causes internal digestive organs to grow together with other organs with which it comes into contact, and endometriosis also becomes involved.
Your pain may be due to adhesions -- a lot of mine was, especially when I was bloated.
Tex
http://www.perskyfarms.com/phpBB2/viewt ... viewresult
We are also more likely to develop intestinal adhesions, but there's no simple way to do a poll on that, since the only way to discover it is by means of surgery, and surgery causes followup adhesions. There's something about the disease that causes internal digestive organs to grow together with other organs with which it comes into contact, and endometriosis also becomes involved.
Your pain may be due to adhesions -- a lot of mine was, especially when I was bloated.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Belle
what a crappy 5 months for you - not fair.
to reiterate what Tex has written about, I am one that has had PCOS since teenage years, and my bowel is adhered to my right ovary - hormones and MC do have a connection - most of it being inflammation
also follow up the accutane situation
my suggestion no matter what it is (UC, Crohns, MC flare, hormones) is to eat a bland low inflammation diet for while and let your body heal....
although the DNC cleans things out it is a very aggressive procedure (like sandpaper on your lining) and would have caused considerable inflammation. If you are anything like me, my body can not cope with hormonal inflammation and digestion inflammation at the same time. I would have days of stabbing pains, that kept me stuck on the lounge. i struggled to pick up clothes from the floor.
i am really sorry i cant offer a quick fix, take a few deep breaths, be assured that others have been in the same situation, they have healed and got a pain free, D free life back
what a crappy 5 months for you - not fair.
to reiterate what Tex has written about, I am one that has had PCOS since teenage years, and my bowel is adhered to my right ovary - hormones and MC do have a connection - most of it being inflammation
also follow up the accutane situation
my suggestion no matter what it is (UC, Crohns, MC flare, hormones) is to eat a bland low inflammation diet for while and let your body heal....
although the DNC cleans things out it is a very aggressive procedure (like sandpaper on your lining) and would have caused considerable inflammation. If you are anything like me, my body can not cope with hormonal inflammation and digestion inflammation at the same time. I would have days of stabbing pains, that kept me stuck on the lounge. i struggled to pick up clothes from the floor.
i am really sorry i cant offer a quick fix, take a few deep breaths, be assured that others have been in the same situation, they have healed and got a pain free, D free life back
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama