Hello all.
First, I'd like to say thanks to everyone who takes the time to help those of us trying to figure all of this out. I have been lurking on this site for almost a year and it has been a life saver both physically and emotionally.
My Enterolab test results just came back (below) and they are sad. I was really hoping to find some "safe" foods and it seems that I react to everything :(
Some info about me:
I have CC I was diagnosed with about a year ago, and T1 diabetes for the last 10 years.
I have been GF, DF, SF, no corn, mostly all grain free (except rice occasionally), mostly egg free except what ever is in the occasional GF (rice) bread I might have, and only eat cooked veggies none of which are nightshades.
I have been on Entocort for almost a year. I have tapered down several times in the last year only to have the D return (not to mention how terribly low energy and yucky I feel coming off of it). I am now on 1 every other day.
I also started taking LDN about a month ago, right after sending in my Enterolab sample. I also have T1 diabetes, so I figure the LDN might help in preventing any further AI issues even if it doesn't magically cure the MC. Since starting LDN, I have become somewhat constipated and am cutting down my Entocort a bit quicker- last week was one a day, this week one every other day etc. This makes me think the LDN is helping and maybe I can get off the roids soon than later.
AND I take a fish oil, vitamin D, Cal Mag Zinc, and a benadryl at bedtime. I feel like besides being a little backed up, I am doing ok for now (knock on wood).
My questions:
I really don't want to sabotage my progress by consuming foods that I react to. That said, I love bone broth and feel like it helps heal my gut, but I have been making chicken broth and eat chicken regularly. My results say that I react to all meat and nuts. Do I really have to cut them out completely? Can I still do the broth at least? Do I have to eat only game meats and duck etc for protein? I just can't get myself to like duck or lamb :( I don't mind cutting out pork, but with no chicken/beef, nuts, grains, or dairy, what the heck do I eat? Just sweet potatoes and elk or mutton? This has been the hardest part of all of this for me emotionally. I love food- organic fresh veggies, cheeses from all over the world, spicy Thai and Mexican- you name it, I love it. Now, I feel like I have sweet potatoes and coconut milk and that's it. I have already lost 15 lbs. since cutting out the big offenders, and although I am not underweight, I don't feel all that healthy with this highly limited diet.
My results say I react to tuna, does this mean salmon and other fish are off limits? I love salmon...
Also, I know most people are not able to take probiotics, but is there a brand that works for some folks?
And finally, I get TERRIBLE gas pains when I eat onions, garlic and other sulphur heavy foods. Is this due to the MC or is this a SIBO issue? I don't intentionally eat onions but they are hiding in everything and really kill me when I inadvertently get some. Should I suspect SIBO as a contributor to the MC or is the MC just an unrelated AI issue?
My results are below. Any input on diet, meds etc would be greatly appreciated. As with many of you, my GI is pretty useless and I have received the most valuable info here on this forum. So thanks again, and happy holidays!
Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel
Fecal Anti-gliadin IgA 166 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 54.7 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 47.7 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 33.3 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 25 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+):
Rice
Chicken
Beef
Almond
Cashew
Walnut
White potato
Food to which there was moderate immunological reactivity (2+):
Oat
Corn
Tuna
Pork
Food to which there was significant and/or the most immunological reactivity (3+):
None
Yeast Sensitivity Stool Test
Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 23 Units (Normal Range is less than 10 Units)
Newbie with Enterolab Results and a Couple of Questions
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Amelia,
You just have to try some of those 1+ and 2+ foods and let your body tell you if you can handle them or not. I was 1+ also with chicken and rice and I ate it every single day (3 x a day) for months. I was 2+ on the nuts and am now able to eat cashew butter and almond butter with no problems at all. Pork was another of my 1+ and I have given up chicken (got so tired of it) for different porks now. I eat sausage, ham, bacon with no problems at all. Beef was a 1+ and I can eat it with no problems. I just don't eat it as often. I rotate it weekly.
You just have to try some of those 1+ and 2+ foods and let your body tell you if you can handle them or not. I was 1+ also with chicken and rice and I ate it every single day (3 x a day) for months. I was 2+ on the nuts and am now able to eat cashew butter and almond butter with no problems at all. Pork was another of my 1+ and I have given up chicken (got so tired of it) for different porks now. I eat sausage, ham, bacon with no problems at all. Beef was a 1+ and I can eat it with no problems. I just don't eat it as often. I rotate it weekly.
Jari
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Hi Amelia,
Welcome to our Internet family.
If this is the case, then your problem is very likely the GF bread that you are eating, because most commercially-processed bread contains ingredients that most of us cannot tolerate. Or it could be due to some source of cross-contamination in your diet. The problem with allowing limited amounts of foods that cause us to react into our diet is that not only do they prompt an immune system response that is equivalent to eating normal amounts of those foods, but in some cases the response can be worse, because as the amount goes down, it appears from our experience that the immune system ratchets up it's sensitivity to those foods because it detects an opportunity to totally destroy those antigens. This theory certainly hasn't been verified or ruled out by any medical research, but the experiences of many members here seem to suggest that this is what happens.
You didn't mention turkey in your discussion of meat options, and yet turkey is probably the safest protein source that we have available to us. Experience shows that most of us who are sensitive to tuna are also sensitive to salmon, but that doesn't rule out other fish. And shellfish are almost always well-tolerated, unless one happens to have a preexisting allergy to shellfish.
Your use of LDN is appropriate, IMO, because I have a theory that some members here who are unable to achieve remission by diet changes are in that dilemma because their persistent MC issues may be due to another AI disease. Sometimes LDN can resolve the issues caused by those other AI diseases, which will then allow the diet changes to resolve their MC symptoms.
Fatigue is very, very common with MC and unfortunately it typically takes from 1 to 2 years (in some cases more) for the fatigue to completely fade away. Our immune system uses up most of our energy trying to fight the inflammation and heal the gut. But it can't possibly heal the gut until the inflammation is no longer being produced and it fades away.
Most of us have problems with onions and garlic while we are recovering, and whether or not this is associated with SIBO is a moot point, because after we get our MC symptoms under control, SIBO is not a problem, and most of us can then tolerate onions and garlic just fine (along with many other foods that we have to avoid while we are recovering). IMO there is a very good chance that most of us do indeed have SIBO while we are reacting, but the SIBO is a result of the MC, not a cause of it, and it will automatically resolve as the MC symptoms are controlled.
Please tell me that you haven't been following a GF, DF, SF, etc., diet for almost a year, so that there is a reason why your test results are still relatively high.
Again, welcome aboard, and please feel free to ask anything.
Tex
P. S. Incidentally, your test results are very similar to Jari's, including the overall score on the test for the 11 other antigenic foods. Therefore, there is a good chance that her comments may apply to you also. But keep in mind that we are all different, so test results do not always correlate with symptoms, when comparing the results for one individual to the results for another.
Welcome to our Internet family.
You didn't say how long you have been following this diet. If it has been for almost a year, then your test results for casein, egg, soy, and yeast antibodies seem too high, and the gliadin antibody result should be lower also (although it may not be out of line, depending on your original antibody level). Anti-gliadin antibodies have a 120-day half-life, so they are very persistent. The others have only about a 6-day half-life though, so they should have decayed much more by now (if you have been avoiding them for roughly a year).Amelia wrote:I have been GF, DF, SF, no corn, mostly all grain free (except rice occasionally), mostly egg free except what ever is in the occasional GF (rice) bread I might have, and only eat cooked veggies none of which are nightshades.
If this is the case, then your problem is very likely the GF bread that you are eating, because most commercially-processed bread contains ingredients that most of us cannot tolerate. Or it could be due to some source of cross-contamination in your diet. The problem with allowing limited amounts of foods that cause us to react into our diet is that not only do they prompt an immune system response that is equivalent to eating normal amounts of those foods, but in some cases the response can be worse, because as the amount goes down, it appears from our experience that the immune system ratchets up it's sensitivity to those foods because it detects an opportunity to totally destroy those antigens. This theory certainly hasn't been verified or ruled out by any medical research, but the experiences of many members here seem to suggest that this is what happens.
You didn't mention turkey in your discussion of meat options, and yet turkey is probably the safest protein source that we have available to us. Experience shows that most of us who are sensitive to tuna are also sensitive to salmon, but that doesn't rule out other fish. And shellfish are almost always well-tolerated, unless one happens to have a preexisting allergy to shellfish.
Your use of LDN is appropriate, IMO, because I have a theory that some members here who are unable to achieve remission by diet changes are in that dilemma because their persistent MC issues may be due to another AI disease. Sometimes LDN can resolve the issues caused by those other AI diseases, which will then allow the diet changes to resolve their MC symptoms.
Fatigue is very, very common with MC and unfortunately it typically takes from 1 to 2 years (in some cases more) for the fatigue to completely fade away. Our immune system uses up most of our energy trying to fight the inflammation and heal the gut. But it can't possibly heal the gut until the inflammation is no longer being produced and it fades away.
Most of us have problems with onions and garlic while we are recovering, and whether or not this is associated with SIBO is a moot point, because after we get our MC symptoms under control, SIBO is not a problem, and most of us can then tolerate onions and garlic just fine (along with many other foods that we have to avoid while we are recovering). IMO there is a very good chance that most of us do indeed have SIBO while we are reacting, but the SIBO is a result of the MC, not a cause of it, and it will automatically resolve as the MC symptoms are controlled.
Please tell me that you haven't been following a GF, DF, SF, etc., diet for almost a year, so that there is a reason why your test results are still relatively high.
Again, welcome aboard, and please feel free to ask anything.
Tex
P. S. Incidentally, your test results are very similar to Jari's, including the overall score on the test for the 11 other antigenic foods. Therefore, there is a good chance that her comments may apply to you also. But keep in mind that we are all different, so test results do not always correlate with symptoms, when comparing the results for one individual to the results for another.
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
Welcome,
Based on what you have written and your results my suggestions are;
-ditch the fish oil supp.... High risk for soy.
-ditch gluten free breads... Processed foods are not ideal, the flour blends make many react
- make home made muffins with coconut flour, safe veges, bone broth of your safe meats.
-you say onions and garlic are in everything, what are you eating that these are in??
-in line with Tex's comment, are you at risk of contamination at home, work etc.
-Double check all toiletry, beauty, make up products for wheat, oat and soy.
In line with Tex's reply and the high scores, do you think that there might enviro triggers (pollen, pollution, mould, chemical etc etc) that are causing the food reactions to be worse?? Were you having hay fever symptoms during the period you collected the stools for testing?
Have you had your Vit D3level checked in the past 6 months??
Based on what you have written and your results my suggestions are;
-ditch the fish oil supp.... High risk for soy.
-ditch gluten free breads... Processed foods are not ideal, the flour blends make many react
- make home made muffins with coconut flour, safe veges, bone broth of your safe meats.
-you say onions and garlic are in everything, what are you eating that these are in??
-in line with Tex's comment, are you at risk of contamination at home, work etc.
-Double check all toiletry, beauty, make up products for wheat, oat and soy.
In line with Tex's reply and the high scores, do you think that there might enviro triggers (pollen, pollution, mould, chemical etc etc) that are causing the food reactions to be worse?? Were you having hay fever symptoms during the period you collected the stools for testing?
Have you had your Vit D3level checked in the past 6 months??
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome Amelia..........
Sorry to hear about your problems. I agree with Tex, Gabes and Jari so no need to add anything except to say we have to be very dilligent about reading kabels and being very aware of all our products. Its tough but we can support each other. :-)
Sorry to hear about your problems. I agree with Tex, Gabes and Jari so no need to add anything except to say we have to be very dilligent about reading kabels and being very aware of all our products. Its tough but we can support each other. :-)
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Jari- Thanks for the info. It's good to know that the 1+ and 2+ aren't off limits for ever.
Tex- No, I have not at all been strict for the whole year. When I was diagnosed my GI told me that food didn't affect my symptoms but I might want to go GF just to be safe, otherwise take these pills and all will be fine... So I went bonkers and ate all kinds of stuff that would have previously made me sick- pizza, cheesecake, big salads etc. When I was on 9mg budesonide this was fine. I thought it was a miracle until it was time to ween off off them and the D would return. Then I started reading this forum and cutting out the big offenders. I would still eat out and get glutened most likely from sauces, and I also would get eggs and dairy in GF baked goods. I bet I also get some contamination at home from my husband and son who eat bread.
It was not until about three or four months ago that I got real serious (as a result of several failed attempts to get off of the budesonide) about cutting gluten, eggs, soy, and dairy out of my diet. Considering the fact that I do not intentionally eat any of those foods, I am adept at reading ingredient labels, and my GF bread is vegan and yeast free rice bread, I feel like those numbers are all pretty high. Now that I see that though, I am going t re-evaluate my possible exposure areas and maybe be more strict about having my own cutting board etc. And yes, I feel like the less of this stuff I eat, the more sensitive to to it I become.
Good to know about shellfish, I'm sure I've read that before but it is a lot of info. I also need to branch out and get more creative with turkey and lamb. I don't really like them, but I'm sure I can acquire a taste just like I did for black coffee.
Thanks again for the welcome and info.
Tex- No, I have not at all been strict for the whole year. When I was diagnosed my GI told me that food didn't affect my symptoms but I might want to go GF just to be safe, otherwise take these pills and all will be fine... So I went bonkers and ate all kinds of stuff that would have previously made me sick- pizza, cheesecake, big salads etc. When I was on 9mg budesonide this was fine. I thought it was a miracle until it was time to ween off off them and the D would return. Then I started reading this forum and cutting out the big offenders. I would still eat out and get glutened most likely from sauces, and I also would get eggs and dairy in GF baked goods. I bet I also get some contamination at home from my husband and son who eat bread.
It was not until about three or four months ago that I got real serious (as a result of several failed attempts to get off of the budesonide) about cutting gluten, eggs, soy, and dairy out of my diet. Considering the fact that I do not intentionally eat any of those foods, I am adept at reading ingredient labels, and my GF bread is vegan and yeast free rice bread, I feel like those numbers are all pretty high. Now that I see that though, I am going t re-evaluate my possible exposure areas and maybe be more strict about having my own cutting board etc. And yes, I feel like the less of this stuff I eat, the more sensitive to to it I become.
Good to know about shellfish, I'm sure I've read that before but it is a lot of info. I also need to branch out and get more creative with turkey and lamb. I don't really like them, but I'm sure I can acquire a taste just like I did for black coffee.
Thanks again for the welcome and info.
Thanks Gabes and HappyBird.
I will ditch the GF bread. I feel like it is the last comfort food I have so I have been holding on, but I even react to rice so...
I think I am getting the onions and garlic when I eat out or at friends houses. For instance I went out to a Hannukah dinner and had the matzo ball soup sans matzo ball and got terrible stomach cramps. I just can't eat things I do not prepare myself. I know that, it's just really hard during the holidays and eating is so social.
I need to check my products too. I thought people were kinda nuts when they would talk about that, but seeing my high numbers I am becoming a believer. I don't really have hay fever type symptoms, but I do get weird welts on the roof of my mouth sometimes, although I am not positive what causes that. I agree that I need to inspect my environment closer.
Thanks again for all the support.
I will ditch the GF bread. I feel like it is the last comfort food I have so I have been holding on, but I even react to rice so...
I think I am getting the onions and garlic when I eat out or at friends houses. For instance I went out to a Hannukah dinner and had the matzo ball soup sans matzo ball and got terrible stomach cramps. I just can't eat things I do not prepare myself. I know that, it's just really hard during the holidays and eating is so social.
I need to check my products too. I thought people were kinda nuts when they would talk about that, but seeing my high numbers I am becoming a believer. I don't really have hay fever type symptoms, but I do get weird welts on the roof of my mouth sometimes, although I am not positive what causes that. I agree that I need to inspect my environment closer.
Thanks again for all the support.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Amelia,
What works for most is sticking with a bland, well cooked, low amount of ingredients eating plan. Get inflammation levels down, let the gut heal a bit.
My current eating plan
I have may 'safe staples' that I eat every day (bland well cooked)
And I have 'sometimes' foods that I can have 1-3 times a week max.
Once there is good healing, minimal symptoms, most MC'ers can eat out, but have to stick within the guidelines of their safe eating plan.
I have some friends that understand my eating plan and they will prepare Gabe safe meals. Otherwise I take my own meal.
I react worse to soy than gluten, so do not use any moisturiser with Vit E.
When I was first Dx'd and found this site, I got new chopping boards, cooking utensils and pans.
Do some reading on the site, there are loads of recipes and meal ideas that can be made with safe ingredients.
I won't lie, living with MC is a tough gig!!!
It takes adjustment, change, sacrifice, organisation..
Our bodies are super sensitive... If we are fighting a cold, and eat the wrong things we can be sick for days.
We have to budget and plan various aspects of our lives, to manage the limited bank of energies (physical, mental, emotional)
MC is for life, and I have seen quite a few here here attain remission for many months and a major emotional stress can cause major flare and months of hell.
As we age, our bodies ability to heal slows down, and the effectiveness of the medications can reduce. Having safe eating plan and lifestyle is foundation of wellness
Welts in the mouth is an indicator of a trigger....
What works for most is sticking with a bland, well cooked, low amount of ingredients eating plan. Get inflammation levels down, let the gut heal a bit.
My current eating plan
I have may 'safe staples' that I eat every day (bland well cooked)
And I have 'sometimes' foods that I can have 1-3 times a week max.
Once there is good healing, minimal symptoms, most MC'ers can eat out, but have to stick within the guidelines of their safe eating plan.
I have some friends that understand my eating plan and they will prepare Gabe safe meals. Otherwise I take my own meal.
I react worse to soy than gluten, so do not use any moisturiser with Vit E.
When I was first Dx'd and found this site, I got new chopping boards, cooking utensils and pans.
Do some reading on the site, there are loads of recipes and meal ideas that can be made with safe ingredients.
I won't lie, living with MC is a tough gig!!!
It takes adjustment, change, sacrifice, organisation..
Our bodies are super sensitive... If we are fighting a cold, and eat the wrong things we can be sick for days.
We have to budget and plan various aspects of our lives, to manage the limited bank of energies (physical, mental, emotional)
MC is for life, and I have seen quite a few here here attain remission for many months and a major emotional stress can cause major flare and months of hell.
As we age, our bodies ability to heal slows down, and the effectiveness of the medications can reduce. Having safe eating plan and lifestyle is foundation of wellness
Welts in the mouth is an indicator of a trigger....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Amelia,
That explains the high test results. Your antibody levels probably took off each time you tried to wean off the Entocort. The longer we eat foods that cause us to react, the higher our antibody numbers climb. And the higher they get, the longer it takes for them to decline to normal levels after we stop eating those foods.
Yes, definitely get your own cutting board, and keep it in a safe place because surfaces that are porous, or grooved, or scratched, or crazed, present major gluten cross-contamination problems. Deeply scratched or cracked pots also pose contamination risks.
You've got the right idea, because while we have to eat a simple, bland diet while we are healing, it can be made much less boring by using creative cooking techniques. As you are well aware, there are many ways to prepare most foods, and even though we may be limited in the types of food we can eat, we are not as limited in how we prepare it.
You're very welcome,
Tex
That explains the high test results. Your antibody levels probably took off each time you tried to wean off the Entocort. The longer we eat foods that cause us to react, the higher our antibody numbers climb. And the higher they get, the longer it takes for them to decline to normal levels after we stop eating those foods.
Yes, definitely get your own cutting board, and keep it in a safe place because surfaces that are porous, or grooved, or scratched, or crazed, present major gluten cross-contamination problems. Deeply scratched or cracked pots also pose contamination risks.
You've got the right idea, because while we have to eat a simple, bland diet while we are healing, it can be made much less boring by using creative cooking techniques. As you are well aware, there are many ways to prepare most foods, and even though we may be limited in the types of food we can eat, we are not as limited in how we prepare it.
You're very welcome,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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You seem to be truly getting the message. You need to be obsessively strict. Simple homecooked foods is the way to go. However boring it may seem, it is so much better than being sick. Most people stick with the same old same old day in and day out. What could be more boring than a bowl of cereal and milk? This way of eating we just change what that same old same old consists of. The up side is that this change usually results in a much healthier diet, especially after the gut heals and nutrients an be better absorbed. At the very least it tends to cut out the junk. I've come to really like my simple and "boring" way of eating and I certainly like not being a slave to the bathroom.
Jean
Jean