Hello,
I have been dealing with LC for almost 4 years now, and after the first year (which was pretty miserable) things were normally manageable. I eliminated a ton of things from my diet and have been living on very few foods for the last few years (meat, rice, eggs, coconut products, a few vegetables, hard/aged cheese in moderation, red/gold potato and peanut, sunflower and cashew butter). My symptoms were mostly unpredictable BMs with urgency (even without D), occasional left side pain, low energy and some bloating. I don't knowingly eat gluten (or most processed/packaged foods), but my family does. I also eliminated beef and collagen/gelatin sources about 18 months ago. That really made a significant difference for me, as beef was causing very painful episodes of cramping, D and dizziness...I was just a little slow to figure out that it was the beef. Anyway, I haven't been "good" for more than a month or two without having periods of minor symptoms creep back up here and there. Going back to my homemade chicken broth, chicken and rice always got me back on track.
This December, my father-in-law died of COVID (active 73 year old without other health issues). Grief, along with everyone's opinions of the virus that killed him, was a major stressor and I began to have frequent symptoms again. I couldn't afford Enterolab testing 4 years ago, and then I seemed to improve enough that it wasn't really something I considered. Anyway, I finally had the testing done as I just can't seem to get back on track this time and I don't want to end up in a full fledged flare of WD 20+ times a day (which is where i was when I started). Wow! The results have me so down and disheartened. Years of my limited diet seem to have been for nothing. I just cannot believe these results. I am reacting to everything tested. I accidentally consumed gluten in a meal dropped off for me in early January. My mom thought she had used a GF ingredient and it wasn't. I ate it several times as leftovers. I also haven't purchased my own pans, cooking utensils, etc. I will be though. When I decided to test, I also ate almond butter, oat flour and plain tortilla chips in small amounts in the weeks leading up to the test. Those are foods I normally wasn't consuming, but I thought if I was testing I would try to get the most bang for my buck and see if they were going to be okay for me. I have a true allergy to walnuts and never eat them. I also don't eat tuna, but have salmon, halibut or cod 3-4 times per month.
I live in a very rural town in WA state. There are plenty of farmers and ranchers in my community, but their animals are most certainly grain finished. What do I eat? Where do I buy organic lamb, rabbit, etc? I am seriously feeling defeated. Since getting my results, even the thought of food or a meal makes me anxious and want to cry which is ramping up my symptoms even more. Are there other sources of protein I should consider? Any help is appreciated. I'd love to hear from those of you that may have had similar test results.Sorry for the novel!
Quantitative Microscopic Fecal Fat Score 525 Units (Normal Range is less than 300 Units)
Fecal Anti-gliadin IgA 509 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 66 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 47 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 49 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 40 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: Food to which there was some immunological reactivity (1+): Food to which there was moderate immunological reactivity (2+):Oat, Rice, Pork, Tuna, Beef, Walnut, Cashew
Food to which there was significant and/or the most immunological reactivity (3+):Chicken, Almond, Corn, White Potato
Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:
Grains:
Grain toward which you displayed the most immunologic reactivity: Corn
Grain toward which you displayed intermediate immunologic reactivity: Oat
Grain toward which you displayed the least immunologic reactivity: Rice
Meats:
Meat toward which you displayed the most immunologic reactivity: Chicken
Meat toward which you were next most immunologically reactive: Tuna
Meat toward which you displayed intermediate immunologic reactivity: Beef
Meat toward which you displayed the least immunologic reactivity: Pork
Nuts:
Nut toward which you displayed the most immunologic reactivity: Almond
Nut toward which you displayed intermediate immunologic reactivity: Walnut
Nut toward which you displayed the least immunologic reactivity: Cashew
Nightshades:
You displayed immunologic reactivity to white potato, the member of the nightshade family usually consumed most often and in greatest quantities. While this does not necessarily mean you would react to all other nightshade foods (tomatoes, peppers, eggplant), it is possible. In the realm of elimination diets for immunologic disorders, nightshades are usually eliminated as the entire food class (i.e., all four previously mentioned foods in this class). This is especially important to the clinical setting of arthritis.
Reacting to entire Enterolab panel...Ugh!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Reacting to entire Enterolab panel...Ugh!
Hashimoto's
Allergies
Chronic Hives
Lymphocytic Colitis
Allergies
Chronic Hives
Lymphocytic Colitis
Re: Reacting to entire Enterolab panel...Ugh!
Hi,
While I'm not one of them, more than a handful of our members have found themselves in the same dilemma as you — sensitive to every food in those test panels. So you're not alone with this problem. Looking at your test results, and your diet history, a couple of points are noteworthy. Note that these are only my observations, aimed at getting you back in remission, and are not intended as criticism.
1. Antibody levels continue to climb with continued exposure.
2. You've been regularly (or repeatedly) exposed to these antigens for years, judging by your comparatively high test results. These are some of the highest numbers we've seen, for all of these foods. This suggests that your diet was so "informal" (or you cheated so often) that your diet basically provided no benefits, as far as antibody levels and intestinal healing are concerned.
That said, if your diet worked for you for the previous four years, it obviously provided at least one important benefit. But your continuing high antibody levels and minimal healing, meant that any state of remission was fragile. So it's not surprising that the stress of grief would cause a relapse that is proving to be difficult to overcome. Chronic stress can overpower remission for any of us, no matter how well we have healed.
To get back into remission, you need to tighten your diet so that your antibody levels will come down, and your intestines can actually do some healing. You are only cheating yourself, when you cheat on your diet, and it will definitely hurt your long-term health, whether or not your symptoms are in remission.
Your situation is challenging, because it's difficult enough to keep our diet safe when there are no food sensitivities in the house. When we're attempting to cook for a family on an unrestricted diet, while trying to maintain a safe diet for ourselves, the situation borders on "Mission Impossible". If there's any wheat flour in the house, for example, saying safe does become impossible, for all practical purposes. Every time a bag of flour is opened, that fine dust drifts everywhere and settles on everything, including dishes stored in cabinets, and utensils stored in drawers. And that can frustrate the best of efforts to maintain a safe diet.
Cooked properly, using a good recipe, very few people are capable of detecting the difference between a regular recipe and a good GF recipe. Some learn to prefer the GF recipes. Bread is an exception, of course. GF breads can never match good wheat flour bread, because that's wheat's only claim to fame. So let them have their wheat bread, if they crave it that much, just be sure that certain rules are in place about how and where it's handled, stored, etc. Other than that, though, You should be able to convert your family to GF eating without a lot of hassle. They will eventually learn to appreciate it, because it will be better for their health. That's how many of us handle the situation. Once you stop cooking with gluten and all the other reactive ingredients, you will find your job to be much easier, and your health much better.
Most families understand, and even when they don't, they are willing to do their part to safeguard your health. In case you have one of those rare families who believe that their food cravings are more important than your health, then just don't tell them that you are modifying your recipes. Do it slowly and without fanfare, in stealth mode, by slowly introducing small changes, so that they won't notice the difference. Dee's Kitchen contains hundreds of good,safe recipes, but the Internet is also loaded with all sorts of recipes, that you can get pointers from to modify your current recipes.
And relax in any way you can. That's something that's not so easy to do these days, but there are online resources, and podcasts that offer coaching on relaxation techniques.
Best of luck to you, in your journey back to health.
Tex
While I'm not one of them, more than a handful of our members have found themselves in the same dilemma as you — sensitive to every food in those test panels. So you're not alone with this problem. Looking at your test results, and your diet history, a couple of points are noteworthy. Note that these are only my observations, aimed at getting you back in remission, and are not intended as criticism.
1. Antibody levels continue to climb with continued exposure.
2. You've been regularly (or repeatedly) exposed to these antigens for years, judging by your comparatively high test results. These are some of the highest numbers we've seen, for all of these foods. This suggests that your diet was so "informal" (or you cheated so often) that your diet basically provided no benefits, as far as antibody levels and intestinal healing are concerned.
That said, if your diet worked for you for the previous four years, it obviously provided at least one important benefit. But your continuing high antibody levels and minimal healing, meant that any state of remission was fragile. So it's not surprising that the stress of grief would cause a relapse that is proving to be difficult to overcome. Chronic stress can overpower remission for any of us, no matter how well we have healed.
To get back into remission, you need to tighten your diet so that your antibody levels will come down, and your intestines can actually do some healing. You are only cheating yourself, when you cheat on your diet, and it will definitely hurt your long-term health, whether or not your symptoms are in remission.
Your situation is challenging, because it's difficult enough to keep our diet safe when there are no food sensitivities in the house. When we're attempting to cook for a family on an unrestricted diet, while trying to maintain a safe diet for ourselves, the situation borders on "Mission Impossible". If there's any wheat flour in the house, for example, saying safe does become impossible, for all practical purposes. Every time a bag of flour is opened, that fine dust drifts everywhere and settles on everything, including dishes stored in cabinets, and utensils stored in drawers. And that can frustrate the best of efforts to maintain a safe diet.
Cooked properly, using a good recipe, very few people are capable of detecting the difference between a regular recipe and a good GF recipe. Some learn to prefer the GF recipes. Bread is an exception, of course. GF breads can never match good wheat flour bread, because that's wheat's only claim to fame. So let them have their wheat bread, if they crave it that much, just be sure that certain rules are in place about how and where it's handled, stored, etc. Other than that, though, You should be able to convert your family to GF eating without a lot of hassle. They will eventually learn to appreciate it, because it will be better for their health. That's how many of us handle the situation. Once you stop cooking with gluten and all the other reactive ingredients, you will find your job to be much easier, and your health much better.
Most families understand, and even when they don't, they are willing to do their part to safeguard your health. In case you have one of those rare families who believe that their food cravings are more important than your health, then just don't tell them that you are modifying your recipes. Do it slowly and without fanfare, in stealth mode, by slowly introducing small changes, so that they won't notice the difference. Dee's Kitchen contains hundreds of good,safe recipes, but the Internet is also loaded with all sorts of recipes, that you can get pointers from to modify your current recipes.
And relax in any way you can. That's something that's not so easy to do these days, but there are online resources, and podcasts that offer coaching on relaxation techniques.
Best of luck to you, in your journey back to health.
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.
Re: Reacting to entire Enterolab panel...Ugh!
Thank you for your time and reply, Tex. I appreciate your knowledge and willingness to help so many people!
I'm feeling pretty down, as I really haven't felt like I have been cheating. I had no idea that eggs, chicken, pork, rice, etc. were foods that I shouldn't be eating. I am now looking high and low to figure out what I can and should eat. I'm open to any suggestions people may have...especially the handful that have had similar results. I sure wish fiber wasn't such an issue for us, as it would open the door to a whole lot more foods.
Since I had been able to keep things in check, I really (mistakenly) thought that not consuming gluten directly was working for me. I wasn't concerned with cross contamination. I have been regularly toasting homemade plantain waffles in the toaster that everyone else uses, etc. I found one generic medication that lists dextrose without identifying the source, so I'll try and follow up on that Monday. My husband is the breakfast maker, and I see that the type of hash brown patties he has been using is not gluten free as the usual ones we use are, so that's definitely a source, along with the accidental ingestion in January. It's my fault for getting complacent and not checking. My family is super supportive and they will absolutely be on board with the changes I have to make, even if they don't like it.
Now that I know potato, soy, dairy and rice are out, I'm going to struggle with the few medications and antihistamine that I really need to take. My thryroid medications both list potato starch. I'll look into non-generic ingredient lists, but I think I'll be hard pressed to find something that doesn't include at least one of my sensitivities. Do you happen to know of an antihistamine that would be safe? I usually take Aller-tec, which has corn starch and lactose in it. I really feel better taking an antihistamine, especially going into spring.
Finally, what do you think about protein? Will natural peanut butter still be okay with those soy numbers? I'm thinking maybe sunflower seed butter and pistachio butter will be okay? I'll be eating a lot of turkey and will use turkey broth in the soups that I make instead of chicken. I'm going to check the closest (and only) health food store for some different meats and I've been looking online. Any suggestions for sources of quail, rabbit, etc. would be appreciated. I've seen lamb at Costco, although it's most certainly conventionally raised. I'm not sure if that will be okay or not. What about fish? Anything that may be safe to put in the rotation? Do you think duck eggs baked in simple paleo muffins would be okay? I rely so heavily on eggs in homemade muffins, etc. that are easy to freeze and have available all the time.
Again, sorry for the novel and thanks again for your time and wisdom. I can't ignore those numbers, and the only way things will change is if things change:) Thanks!
I'm feeling pretty down, as I really haven't felt like I have been cheating. I had no idea that eggs, chicken, pork, rice, etc. were foods that I shouldn't be eating. I am now looking high and low to figure out what I can and should eat. I'm open to any suggestions people may have...especially the handful that have had similar results. I sure wish fiber wasn't such an issue for us, as it would open the door to a whole lot more foods.
Since I had been able to keep things in check, I really (mistakenly) thought that not consuming gluten directly was working for me. I wasn't concerned with cross contamination. I have been regularly toasting homemade plantain waffles in the toaster that everyone else uses, etc. I found one generic medication that lists dextrose without identifying the source, so I'll try and follow up on that Monday. My husband is the breakfast maker, and I see that the type of hash brown patties he has been using is not gluten free as the usual ones we use are, so that's definitely a source, along with the accidental ingestion in January. It's my fault for getting complacent and not checking. My family is super supportive and they will absolutely be on board with the changes I have to make, even if they don't like it.
Now that I know potato, soy, dairy and rice are out, I'm going to struggle with the few medications and antihistamine that I really need to take. My thryroid medications both list potato starch. I'll look into non-generic ingredient lists, but I think I'll be hard pressed to find something that doesn't include at least one of my sensitivities. Do you happen to know of an antihistamine that would be safe? I usually take Aller-tec, which has corn starch and lactose in it. I really feel better taking an antihistamine, especially going into spring.
Finally, what do you think about protein? Will natural peanut butter still be okay with those soy numbers? I'm thinking maybe sunflower seed butter and pistachio butter will be okay? I'll be eating a lot of turkey and will use turkey broth in the soups that I make instead of chicken. I'm going to check the closest (and only) health food store for some different meats and I've been looking online. Any suggestions for sources of quail, rabbit, etc. would be appreciated. I've seen lamb at Costco, although it's most certainly conventionally raised. I'm not sure if that will be okay or not. What about fish? Anything that may be safe to put in the rotation? Do you think duck eggs baked in simple paleo muffins would be okay? I rely so heavily on eggs in homemade muffins, etc. that are easy to freeze and have available all the time.
Again, sorry for the novel and thanks again for your time and wisdom. I can't ignore those numbers, and the only way things will change is if things change:) Thanks!
Hashimoto's
Allergies
Chronic Hives
Lymphocytic Colitis
Allergies
Chronic Hives
Lymphocytic Colitis
Re: Reacting to entire Enterolab panel...Ugh!
If you avoid the biggest sources of corn starch, I have a hunch that the small amount in medications won't be problem. It isn't for most of us.
You'll meed to get a dedicated toaster that no one else uses, because toasters are definitely notorious for gluten contamination. A countertop toaster oven will work, because you can put foil under your food.
The support of your family will make recovery much easier. With their support, you should soon be back to good digestive health, because state of mind is important for healing.
Fiber doesn't have to be eliminated — only minimized.
Most of us who are sensitive to soy, also react to most legumes (which makes most gums a problem). Peanuts are a legume, so peanut butter is out. Yes, pistachio butter and sunflower seed butter might be safe. If you can't find those, cashew butter might work, if you don't overdo it.
Conventionally-raised lamb should be OK. You may have to search online for some of the other wild-type proteins. Some frmer's markets have a good selection of the more exotic foods, when they reopen later. Some types of fish may not work, but shellfish should be safe (shrimp, prawns, mussels,clams, etc.).
Duck eggs might work in baked goods, Especially if the recipe doesn't call for too many of them.
I notice that pork was your least-reactive meat in the test, so you may be able to occasionally eat pork (even bacon).
Note that as the sensitivity of your immune system slowly settles back to a more normal level, and your digestive system slowly heals, you may be able to add some of the foods that are currently off limits back into your diet. This might be a year or two down the road, depending on how fast you heal, but it will eventually happen. Unfortunately, you'll almost surely need to continue to avoid the "big four" forever. You might eventually be able to use chicken eggs in baked goods some day, but that's not always a sure thing for many of us.
I hope this helps.
Tex
You'll meed to get a dedicated toaster that no one else uses, because toasters are definitely notorious for gluten contamination. A countertop toaster oven will work, because you can put foil under your food.
The support of your family will make recovery much easier. With their support, you should soon be back to good digestive health, because state of mind is important for healing.
Fiber doesn't have to be eliminated — only minimized.
Most of us who are sensitive to soy, also react to most legumes (which makes most gums a problem). Peanuts are a legume, so peanut butter is out. Yes, pistachio butter and sunflower seed butter might be safe. If you can't find those, cashew butter might work, if you don't overdo it.
Conventionally-raised lamb should be OK. You may have to search online for some of the other wild-type proteins. Some frmer's markets have a good selection of the more exotic foods, when they reopen later. Some types of fish may not work, but shellfish should be safe (shrimp, prawns, mussels,clams, etc.).
Duck eggs might work in baked goods, Especially if the recipe doesn't call for too many of them.
I notice that pork was your least-reactive meat in the test, so you may be able to occasionally eat pork (even bacon).
Note that as the sensitivity of your immune system slowly settles back to a more normal level, and your digestive system slowly heals, you may be able to add some of the foods that are currently off limits back into your diet. This might be a year or two down the road, depending on how fast you heal, but it will eventually happen. Unfortunately, you'll almost surely need to continue to avoid the "big four" forever. You might eventually be able to use chicken eggs in baked goods some day, but that's not always a sure thing for many of us.
I hope this helps.
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.
Re: Reacting to entire Enterolab panel...Ugh!
Well, I’m one of those folks Tex is referring to who reacted to everything at a 2 or 3+. I’d been gf/DF/sf for like 7 or 8 years based on the first Enterolab testing I’d done. In hindsight I had sketchy “control “ for years. I lived my life but again, in hindsight it wasn’t that great. I realize that now.
Eliminating gluten from the house and my families diet (@ home) wasn’t that big of a deal. And I was dealing with a teenage boy also...but then we liked to cook and they were adventurous eaters.
Turns out my issue is bile acid malabsorption and cholestyramine (Plus a couple minor additions ) in MASSIVE quantities solved my problems . This wasn’t on my radar screen, heard about it here first.
Message me if you want. Sorry if I’m a broken record guys
Laine
Eliminating gluten from the house and my families diet (@ home) wasn’t that big of a deal. And I was dealing with a teenage boy also...but then we liked to cook and they were adventurous eaters.
Turns out my issue is bile acid malabsorption and cholestyramine (Plus a couple minor additions ) in MASSIVE quantities solved my problems . This wasn’t on my radar screen, heard about it here first.
Message me if you want. Sorry if I’m a broken record guys
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Re: Reacting to entire Enterolab panel...Ugh!
I just wanted to say that I'm sorry for the loss of your father in law.
Re: Reacting to entire Enterolab panel...Ugh!
Thank you so much, Brandy. Loss is always hard. It feels like many people have the opinion that those dying from Covid don't really matter because they must be elderly or have underlying health issues...as if that matters. Anyway, people like you remind me that the world is full of wonderful, compassionate people. Thanks again! I hope you are well.
Hashimoto's
Allergies
Chronic Hives
Lymphocytic Colitis
Allergies
Chronic Hives
Lymphocytic Colitis
Re: Reacting to entire Enterolab panel...Ugh!
Thank you Laine. I appreciate your input and will explore BAM with my doctor. When looking at my Enterolab scores, it seems I would have been in much worse condition than I am. (Knock on wood!) I certainly have days with D, but also many with only 1-2 BMs that are pretty solid. I always have urgency though, even when things are formed. I can relate to having "sketchy control." Things haven't been terrible, but I really haven't felt good for a long time.
How were you diagnosed and did you only have D with your BAM? Are you able to eat more foods now that you are on Cholestryamine? Thanks again for your reply!
I hope this finds you well.
Marsha
How were you diagnosed and did you only have D with your BAM? Are you able to eat more foods now that you are on Cholestryamine? Thanks again for your reply!
I hope this finds you well.
Marsha
Hashimoto's
Allergies
Chronic Hives
Lymphocytic Colitis
Allergies
Chronic Hives
Lymphocytic Colitis
Re: Reacting to entire Enterolab panel...Ugh!
Well, here in the US is anyone really ever diagnosed with BAM? My formal biopsy diagnosis is collagenous colitis. My PCPs office just went with the trial of cholestyramine starting at 2 packets a day.
I never ever ever ever ever ever ( you get the idea) was constipated. I can poop deer pellets but I truly don’t think I’ve ever been constipated in my life. Honestly my poop can and does vary a bit even now, but it’s solid. No poofy disappearing poop! Believe me, I’ve had it all. And definitely had the microscopic colitis MUD for years..soft serve basically.
I eat whatever I want now. That still blows me away. I eased back into that slowly as I just didn’t trust it! I know there are folks reading this that probably think my issues were mild...I was concerned that this might actually kill me, and if not dead-then I would probably be on disability at home best case. You can’t be a Physical Therapist in a hospital setting and be as messed up as I was. Adult diapers don’t contain diarrhea adequately people ...ask me how I know
And driving to work was always fun...eventually having a bed pan in the car solved that problem...I’ve probably used that 20 times over the years...and stopped emergently at stores, parks, construction sites, highway off ramps with foliage ( anything I could poop behind)....constantly.
BAM isn’t everyone’s issue. Just don’t rule it out if everything else that you try first doesn’t work! That’s my point
Sorry if I’ve offended anyone ( we all have horrifying stories)..
Laine
I never ever ever ever ever ever ( you get the idea) was constipated. I can poop deer pellets but I truly don’t think I’ve ever been constipated in my life. Honestly my poop can and does vary a bit even now, but it’s solid. No poofy disappearing poop! Believe me, I’ve had it all. And definitely had the microscopic colitis MUD for years..soft serve basically.
I eat whatever I want now. That still blows me away. I eased back into that slowly as I just didn’t trust it! I know there are folks reading this that probably think my issues were mild...I was concerned that this might actually kill me, and if not dead-then I would probably be on disability at home best case. You can’t be a Physical Therapist in a hospital setting and be as messed up as I was. Adult diapers don’t contain diarrhea adequately people ...ask me how I know
And driving to work was always fun...eventually having a bed pan in the car solved that problem...I’ve probably used that 20 times over the years...and stopped emergently at stores, parks, construction sites, highway off ramps with foliage ( anything I could poop behind)....constantly.BAM isn’t everyone’s issue. Just don’t rule it out if everything else that you try first doesn’t work! That’s my point
Sorry if I’ve offended anyone ( we all have horrifying stories)..
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt