I'm stunned. Everything I've been eating is likely problematic. Arghh....I've been feeling better but it must be the budesonide masking symptoms. I've been gluten, soy, egg and dairy free since I began reading this board at the end of May when I was first diagnosed with LC. But, I've been eating a lot of beef, potatoes, almonds and rice. I have to totally re-do my diet. And, it appears from first glance at least, that there isn't much I'll be able to eat : ( I hate this. I know you all feel the same. I'm not sure I have the strength to do what I know I have to do. I guess I'll have to find it but life right now is stressful enough without this nonsense!
I'd be so appreciative of any advice you could provide. Again, I'm not sure where to go from here but I'm just absorbing it all right now and trying to understand it.
I'm soooo glad this site exists and that all of you are here.
Gluten/Antigenic Food Sensitivity Stool Panel
Fecal Anti-gliadin IgA 185 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 76 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 41 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 50 Units (Normal Range is less than 10 Units)
Fat Malabsorption Stool Test (Fecal Fat)
Quantitative Microscopic Fecal Fat Score 999 Units (Normal Range is less than 300 Units)
Gluten Sensitivity Gene Test
HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0302
Serologic equivalent: HLA-DQ 2,3 (Subtype 2,8)
Expanded Antigenic Food Sensitivity Stool Panel
Mean Value 11 Antigenic Foods 33 Units (Normal Range is less than 10 Units)
While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:
Food to which there was no significant immunological reactivity: None
Food to which there was some immunological reactivity (1+):Cashew Walnut
Food to which there was moderate immunological reactivity (2+):Oat, Corn, Rice, Pork, Chicken
Food to which there was significant and/or the most immunological reactivity (3+): Tuna, Beef, Almond, White Potato
Enterolab Test Results ...sob
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jody,
Whoa! Fate has really dealt you a tough hand to play. Almost all of your scores are rather high, and you even have extensive small intestinal damage. And to top it off, you have a copy of both celiac genes. So clearly, avoiding all traces of gluten will be your number 1 priority, and by doing that, hopefully your sensitivity to some of the other foods may decline somewhat, over time.
While you are still taking budesonide, you may be able to continue to eat rice, pork, and chicken, but after you taper the dose (or if you are not able to maintain remission while taking Entocort), you may need to test them (individually of course), to see if you can still tolerate them.
Many members in your situation find that they can safely replace chicken with turkey, and pork and beef can be replaced with lamb, rabbit, or venison, or other less common meats (but avoid bison/buffalo, because their DNA virtually always contains DNA from domestic cattle).
Potatoes can be replaced with sweet potatoes/yams, in many cases.
Other members here have a lot of experience with diet substitutions, so they should be able to provide more dietary alternatives than I can. I eat a pretty limited diet, so I'm not well acquainted with making diet substitutions.
Do you mind if I add your results to our list here?
Tex
Whoa! Fate has really dealt you a tough hand to play. Almost all of your scores are rather high, and you even have extensive small intestinal damage. And to top it off, you have a copy of both celiac genes. So clearly, avoiding all traces of gluten will be your number 1 priority, and by doing that, hopefully your sensitivity to some of the other foods may decline somewhat, over time.
While you are still taking budesonide, you may be able to continue to eat rice, pork, and chicken, but after you taper the dose (or if you are not able to maintain remission while taking Entocort), you may need to test them (individually of course), to see if you can still tolerate them.
Many members in your situation find that they can safely replace chicken with turkey, and pork and beef can be replaced with lamb, rabbit, or venison, or other less common meats (but avoid bison/buffalo, because their DNA virtually always contains DNA from domestic cattle).
Potatoes can be replaced with sweet potatoes/yams, in many cases.
Other members here have a lot of experience with diet substitutions, so they should be able to provide more dietary alternatives than I can. I eat a pretty limited diet, so I'm not well acquainted with making diet substitutions.
Do you mind if I add your results to our list here?
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.
Thanks so much for your prompt response Tex. You are truly an angel. And, yes, please feel free to add my results to the list. I am still stunned as I was expecting my results to actually free up some food options and it's done just the opposite.
Unfortunately I dislike cooking and food prep immensely. So, this is a real challenge for me. I also have very immature taste buds lol. I dislike all the meat options except for turkey so that may be my only meat source. Fortunately, I don't mind eating simply and am not a foodie but, I have to find food I like that likes me back.
I had been feeling so badly for those on here with such restricted diets and was feeling ignorantly grateful that I was not "that bad". I'm not sure that I can live without almonds! lol. I've been eating them as a snack daily for years thinking they were so good for me.
I am surprised, given that I test so high for the gluten, that the blood test for Celiac was negative.
Again, thanks so much for being here Tex. I never would have known how to get better without you and this message board.
Unfortunately I dislike cooking and food prep immensely. So, this is a real challenge for me. I also have very immature taste buds lol. I dislike all the meat options except for turkey so that may be my only meat source. Fortunately, I don't mind eating simply and am not a foodie but, I have to find food I like that likes me back.
I had been feeling so badly for those on here with such restricted diets and was feeling ignorantly grateful that I was not "that bad". I'm not sure that I can live without almonds! lol. I've been eating them as a snack daily for years thinking they were so good for me.
I am surprised, given that I test so high for the gluten, that the blood test for Celiac was negative.
Again, thanks so much for being here Tex. I never would have known how to get better without you and this message board.
Jody
Jody,
I miss almonds, too. I can't eat any nuts. But with any luck at all you should be able to safely eat cashews and walnuts. I used to love cashews. There is even a recipe somewhere for cashew cheese.
The blood tests for celiac disease have such a low sensitivity and reliability that they are close to worthless for most people. A patient's small intestine has to look like a virtual barren landscape in a war zone under the microscope before those blood tests will show a positive result for celiac disease. The medical community desperately needs to get their ducks in a row regarding testing for celiac disease and gluten sensitivity.
It all seems completely overwhelming and unreal at first, but as you begin to organize your treatment program, and begin to see more success, you will find that it is doable, and we usually find that it's not as bad as we anticipated, as long as we stick to our treatment plan, and fine-tune it whenever necessary.
Thanks, I'll add your results to the list.
Tex
I miss almonds, too. I can't eat any nuts. But with any luck at all you should be able to safely eat cashews and walnuts. I used to love cashews. There is even a recipe somewhere for cashew cheese.
The blood tests for celiac disease have such a low sensitivity and reliability that they are close to worthless for most people. A patient's small intestine has to look like a virtual barren landscape in a war zone under the microscope before those blood tests will show a positive result for celiac disease. The medical community desperately needs to get their ducks in a row regarding testing for celiac disease and gluten sensitivity.
It all seems completely overwhelming and unreal at first, but as you begin to organize your treatment program, and begin to see more success, you will find that it is doable, and we usually find that it's not as bad as we anticipated, as long as we stick to our treatment plan, and fine-tune it whenever necessary.
Thanks, I'll add your results to the list.
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.
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Jody,
There is another way to think about results like you got. It takes some effort to do that, but instead of thinking about how many things you now cannot eat you can try to tell yourself how lucky you are that now you have an explanation for how sick you have been and a way to alleviate your symptoms and potentially achieve remission. Yes it can be challenging but it is a lot better than having no solution. I am not saying it is easy but it is doable. I believe that how we think about things effects our likelihood of success. If we dwell on the deprivation it can be harder to stick with the program. I prefer to think of the way I eat as a gift I give myself that leads to health. It's a gift that can keep on giving.
Jean
There is another way to think about results like you got. It takes some effort to do that, but instead of thinking about how many things you now cannot eat you can try to tell yourself how lucky you are that now you have an explanation for how sick you have been and a way to alleviate your symptoms and potentially achieve remission. Yes it can be challenging but it is a lot better than having no solution. I am not saying it is easy but it is doable. I believe that how we think about things effects our likelihood of success. If we dwell on the deprivation it can be harder to stick with the program. I prefer to think of the way I eat as a gift I give myself that leads to health. It's a gift that can keep on giving.
Jean
JFR wrote:Jody,
There is another way to think about results like you got. It takes some effort to do that, but instead of thinking about how many things you now cannot eat you can try to tell yourself how lucky you are that now you have an explanation for how sick you have been and a way to alleviate your symptoms and potentially achieve remission. Yes it can be challenging but it is a lot better than having no solution. I am not saying it is easy but it is doable. I believe that how we think about things effects our likelihood of success. If we dwell on the deprivation it can be harder to stick with the program. I prefer to think of the way I eat as a gift I give myself that leads to health. It's a gift that can keep on giving.
Jean
Very true Jean. It does explain so much. Although my GI issues are fairly recent, I've had depression and unexplained fatigue for many years. I'm feeling better knowing that perhaps the food intolerances were the root of those issues as well and hopefully I can be free of them once I've got the food under control.
I like the way you think and I'm going to print out what you wrote for a reminder to refer to when I'm having a hard time.
Thank you!!
Jody
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
Hi Jody, You got hit with a lot of bad news and I'm so sorry. I remember being in shock when I got my Enterolab results. For me, entocort worked the first day I took it. It stopped the WD immediately.
I think the most important advice I can give you, especially considering all of your sensitivities, is to keep your food as simple and pure as possible. When we try to recreate favorite recipes the results are almost always a disappointment and almost always cause symptoms. I love to cook and I no longer try to replicate my favorite "gourmet" recipes. Same goes for store bought GF prepared food. The only one I buy is GF waffles and I never liked waffles much before. Your tastes will change and after a while you will find yourself enjoying your new spartan diet because you will feel so much better.
Best of luck and you know this is the place to come with questions, rants, for comfort. We are all in the same large boat.
Sheila W
I think the most important advice I can give you, especially considering all of your sensitivities, is to keep your food as simple and pure as possible. When we try to recreate favorite recipes the results are almost always a disappointment and almost always cause symptoms. I love to cook and I no longer try to replicate my favorite "gourmet" recipes. Same goes for store bought GF prepared food. The only one I buy is GF waffles and I never liked waffles much before. Your tastes will change and after a while you will find yourself enjoying your new spartan diet because you will feel so much better.
Best of luck and you know this is the place to come with questions, rants, for comfort. We are all in the same large boat.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Hi Jody!
I was in shock, too, after my getting my results, in early April. Like you, I reacted to all foods tested.
Here is what I have learned since then:
I stopped eating all processed foods and make my own. That way I know the ingredients that are used.
Be certain that you look for hidden sources of gluten & soy....they're everywhere.
I had to stop taking my nutrients, and probiotics in order to heal. I only take Allegra for control of histamines.
I am rotating my meats, and not eating fruits & veggies, right now. They were causing bloating, gas, D etc.
I stopped eating all grains for 2 months in order to allow my leaky gut to heal. Then, I successfully added buckwheat and teff flour. I will start adding a cooked veggie at a time soon.
I had to adopt a very simplistic eating plan in order to start the healing process.
It is not easy, but is very doable.
:)
I was in shock, too, after my getting my results, in early April. Like you, I reacted to all foods tested.
Here is what I have learned since then:
I stopped eating all processed foods and make my own. That way I know the ingredients that are used.
Be certain that you look for hidden sources of gluten & soy....they're everywhere.
I had to stop taking my nutrients, and probiotics in order to heal. I only take Allegra for control of histamines.
I am rotating my meats, and not eating fruits & veggies, right now. They were causing bloating, gas, D etc.
I stopped eating all grains for 2 months in order to allow my leaky gut to heal. Then, I successfully added buckwheat and teff flour. I will start adding a cooked veggie at a time soon.
I had to adopt a very simplistic eating plan in order to start the healing process.
It is not easy, but is very doable.
:)
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
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seeljanerun
- Adélie Penguin
- Posts: 73
- Joined: Wed Aug 14, 2013 11:33 am
Jody - Wow - very overwhelming for sure! I agree with Jean - it is a gift to have been given the pathway to health, even if it is a long uphill trail.
It seems as if many of us have struggled with this illness for a number of years, trying to figure out what the heck was going on and not knowing exactly how to fix it; myself, for sure, am one of those people!
I just ordered the A+C enterolab test last night; part of me is scared of what it may say, but I think no matter what I will just be relieved to know what it is exactly I need to eat/not eat in order to get back to health.
While I am going to start an elimination diet in the meantime to hopefully facilitate the process, I can hardly wait to get the test and then get the results! I've dealt with this crap (literally) for far too long
Goodluck to you Jody! Be patient and kind with yourself. Big changes are not easy, but this one will certainly alter your life for the better.
It seems as if many of us have struggled with this illness for a number of years, trying to figure out what the heck was going on and not knowing exactly how to fix it; myself, for sure, am one of those people!
I just ordered the A+C enterolab test last night; part of me is scared of what it may say, but I think no matter what I will just be relieved to know what it is exactly I need to eat/not eat in order to get back to health.
While I am going to start an elimination diet in the meantime to hopefully facilitate the process, I can hardly wait to get the test and then get the results! I've dealt with this crap (literally) for far too long
Goodluck to you Jody! Be patient and kind with yourself. Big changes are not easy, but this one will certainly alter your life for the better.
Thanks so much everyone for the much needed boost!
Great advice. The Budesonide worked on my WD right away too and I haven't had any since. I've just decreased to 3 mg a day as of yesterday and am holding my breath. lol. My main issues remain extreme fatigue, foggy brain, nausea and headaches. I was so happy to not have the WD I figured the other issues would resolve with time and being GF, DF, SF and EF which I've done pretty well since the end of May. But, I see now that I was still eating food that doesn't like me!
Fortunately, I don't like to cook and don't really care about favorite recipes. lol Unfortunately, I don't like to cook and can't get take out or eat the quick foods I was used to eating. I don't care to go out to eat so that's not a big deal for me but it does cut into our social life.
I really only eat to live....but I want it to taste good and be quickly prepared. I think if I didn't have to work and have my brain functioning well, I might just stay the course with the GF, DF, SF and EF that I've done well with. But, I've been out on disability all summer and started back to work last Wed and realized that I'm no where near being well enough to not do further work on my diet. Then, I got these results on yesterday which confirmed that.
I have said for years that I wish I could just take a pill instead of eating as I never found it that enjoyable.
Linda, what were you eating while you were off the fruits/veggies and grains?
I guess I just want someone to tell me what and how much to eat to stay healthy and I'll do it. I'm overwhelmed and too foggy to put the thought into it that is needed. I'm feeling very whiney and immature about this and I really don't like myself like this as I try to stay very positive about most everything else.
I really appreciate everyone's sharing of their experiences as I don't know anyone in real life that has a clue what we are up against. I used to think having to go GF would be so difficult...now I would love for that to be all I had to do! Piece of cake (pun intended)!
Great advice. The Budesonide worked on my WD right away too and I haven't had any since. I've just decreased to 3 mg a day as of yesterday and am holding my breath. lol. My main issues remain extreme fatigue, foggy brain, nausea and headaches. I was so happy to not have the WD I figured the other issues would resolve with time and being GF, DF, SF and EF which I've done pretty well since the end of May. But, I see now that I was still eating food that doesn't like me!
Fortunately, I don't like to cook and don't really care about favorite recipes. lol Unfortunately, I don't like to cook and can't get take out or eat the quick foods I was used to eating. I don't care to go out to eat so that's not a big deal for me but it does cut into our social life.
I really only eat to live....but I want it to taste good and be quickly prepared. I think if I didn't have to work and have my brain functioning well, I might just stay the course with the GF, DF, SF and EF that I've done well with. But, I've been out on disability all summer and started back to work last Wed and realized that I'm no where near being well enough to not do further work on my diet. Then, I got these results on yesterday which confirmed that.
I have said for years that I wish I could just take a pill instead of eating as I never found it that enjoyable.
Linda, what were you eating while you were off the fruits/veggies and grains?
I guess I just want someone to tell me what and how much to eat to stay healthy and I'll do it. I'm overwhelmed and too foggy to put the thought into it that is needed. I'm feeling very whiney and immature about this and I really don't like myself like this as I try to stay very positive about most everything else.
I really appreciate everyone's sharing of their experiences as I don't know anyone in real life that has a clue what we are up against. I used to think having to go GF would be so difficult...now I would love for that to be all I had to do! Piece of cake (pun intended)!
Jody
Jody,
I ate meat 3 meals a day (still do, we need lots of protein to heal), I soaked and dehydrated nuts, then made nut butters (they seem to be easier to digest), and I ate well cooked veggies (carrots, squashed, green beans). I could also eat coconut, so I make eggless macaroons, and that's my treat.
After I started eating grains again, I realized I still wasn't healing, and stopped eating veggies for a while, but I did eat them for the carbs while I was grain free.
I think you also have to throw out the window, the idea of eating to stay healthy right now. You have to eat to heal first. Then, once the symptoms (fatigue, joint aches, D) start to diminish, you can start adding foods back into your diet like veggies and fruits.
I am only eating buckwheat/teff bread or muffins (yeast free) and meats, and rotating the meats has helped.
I ate meat 3 meals a day (still do, we need lots of protein to heal), I soaked and dehydrated nuts, then made nut butters (they seem to be easier to digest), and I ate well cooked veggies (carrots, squashed, green beans). I could also eat coconut, so I make eggless macaroons, and that's my treat.
After I started eating grains again, I realized I still wasn't healing, and stopped eating veggies for a while, but I did eat them for the carbs while I was grain free.
I think you also have to throw out the window, the idea of eating to stay healthy right now. You have to eat to heal first. Then, once the symptoms (fatigue, joint aches, D) start to diminish, you can start adding foods back into your diet like veggies and fruits.
I am only eating buckwheat/teff bread or muffins (yeast free) and meats, and rotating the meats has helped.
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Oh Jody! Tough results to swallow :(
Since your D has stopped and you are pretty stable on 3 mg. of Entocort ( which is considered a small dose), I would suggest staying at that dose for a while. Take out your +3 foods and see if you can continue to heal on that diet for a couple of months. If you start feeling better, you can do every other day with the drug. The more your gut heals, the more likely you will be able to tolerate your +1 and +2 foods. If you don't feel better at all, then take out your +2 foods...etc. We all have to figure this out slowly. So, take a deep breath and try not to do it all at once. That's what the drug is for.... to give you time to adjust your diet.
Leah
Since your D has stopped and you are pretty stable on 3 mg. of Entocort ( which is considered a small dose), I would suggest staying at that dose for a while. Take out your +3 foods and see if you can continue to heal on that diet for a couple of months. If you start feeling better, you can do every other day with the drug. The more your gut heals, the more likely you will be able to tolerate your +1 and +2 foods. If you don't feel better at all, then take out your +2 foods...etc. We all have to figure this out slowly. So, take a deep breath and try not to do it all at once. That's what the drug is for.... to give you time to adjust your diet.
Leah
Thanks for the info Linda and Leah.
I'm still sorting through my thoughts and feelings. Because I am still having a hard time with foggy brain and problems concentrating, I'm working it out incrementally.
Day 3 on 3 mg of Entecort...nausea and headache not too bad today but I have some muscle aching that I didn't have previously. Mostly shoulders and arms. Weird. I think I'm very tense though and angry. I have to work through this and I will.
Meanwhile I am doing all I can to avoid all gluten, soy, eggs and dairy and all +3 foods like you said Leah. Right now, I'm not angry about the food as much as the damage that has been done and if I had known of my gluten sensitivities years ago I could have avoided a lot of misery in the form of depression and treatments for same. I supposed I should just be grateful that I know now and can make the changes necessary. And, I certainly would still be clueless with this board!
The other part that has me angry is for my brothers who must have the same genetic makeup as I have. One was depressed and drank himself to death at 48 years old. The other, who is now 62, became very ill this summer and has been diagnosed with Wernicke's -Karsakoff syndrome.
Everyone attributed his symptoms and diagnosis to alcohol but I wasn't convinced the amount he drank could be the sole cause of the damage he's suffered. Severe memory loss and malnutrition. Further reading (since I realize now how my family must all be affected by the gluten/celiac genes) has me convinced that he likely has the small intestine damage that I have and has serious nutrient malabsorption which is a description of Wernicke's-Karsakoff. Specifically B1 deficiency. I wonder how close I was to his diagnosis.
It's been an eye-opening adventure! And, I am sure it will continue to be
I'm still sorting through my thoughts and feelings. Because I am still having a hard time with foggy brain and problems concentrating, I'm working it out incrementally.
Day 3 on 3 mg of Entecort...nausea and headache not too bad today but I have some muscle aching that I didn't have previously. Mostly shoulders and arms. Weird. I think I'm very tense though and angry. I have to work through this and I will.
Meanwhile I am doing all I can to avoid all gluten, soy, eggs and dairy and all +3 foods like you said Leah. Right now, I'm not angry about the food as much as the damage that has been done and if I had known of my gluten sensitivities years ago I could have avoided a lot of misery in the form of depression and treatments for same. I supposed I should just be grateful that I know now and can make the changes necessary. And, I certainly would still be clueless with this board!
The other part that has me angry is for my brothers who must have the same genetic makeup as I have. One was depressed and drank himself to death at 48 years old. The other, who is now 62, became very ill this summer and has been diagnosed with Wernicke's -Karsakoff syndrome.
Everyone attributed his symptoms and diagnosis to alcohol but I wasn't convinced the amount he drank could be the sole cause of the damage he's suffered. Severe memory loss and malnutrition. Further reading (since I realize now how my family must all be affected by the gluten/celiac genes) has me convinced that he likely has the small intestine damage that I have and has serious nutrient malabsorption which is a description of Wernicke's-Karsakoff. Specifically B1 deficiency. I wonder how close I was to his diagnosis.
It's been an eye-opening adventure! And, I am sure it will continue to be
Jody