Thanks to anyone who takes the time to read and comment on this. I have really appreciated this site’s wealth of information, as well as “The Book.” I did get Enterolab testing done at the end of June, and I am rather overwhelmed with what looks like bad news. The results:
Quantitative Microscopic Fecal Fat Score 669 Units (Normal Range is less than 300 Units)
Fecal Anti-gliadin IgA 447 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 49 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 20 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 63 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 18 Units (Normal Range is less than 10 Units)
Food to which there was significant and/or the most immunological reactivity (3+): Corn, Tuna
Food to which there was moderate immunological reactivity (2+): Oat, Rice, Chicken, Beef
Food to which there was some immunological reactivity (1+): Pork, Walnut, Almond, Cashew, White potato
Food to which there was no significant immunological reactivity: None (gee, thanks)
Gluten Sensitivity Gene Test
HLA-DQB1 Molecular analysis, Allele 1* 03:02
HLA-DQB1 Molecular analysis, Allele 2* 05:03
Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)
Background: I am 50 and about 2-3 years ago I began to have more frequent stools and occasional diarrhea. That prompted a colonoscopy in Jan. 2019 and a doc’s poorly-written conclusion that my symptoms were “consistent with” collagenous colitis. I misunderstood this and thought this was not a definitive diagnosis, and only this year when things worsened did I seek out this board. Helpful folks like Tex explained this unclear language meant I really DID have CC. Oh no!
My main symptom now is soft-formed stool about twice in the morning after my first meal, followed by several episodes of D for about an hour. Occasionally once or twice later in the day. Elsewhere on the forum I have read that this symptom level meant inflammation level wasn’t THAT bad. But when I look at the wide variety of foods I reacted to, it does feel like I am in a bad place.
Some questions to start with;
- I have immediately gone gluten-free, dairy-free, and am trying to go soy-free as well, but that is a sneaky ingredient (in my chocolate?! A final refuge gone?). From my results, should I also go chicken egg-free?
- Do I start with the Level 1 healing diet? What would that be for me? Turkey and rice (a +2 for me, but I don’t know what other grain/carb to use). I just bought a quarter steer from a farmer friend so we have lots of beef in the freezer.
- I guess one does Level 1 diet til a large improvement is seen?
- How intense do I have to be about the gluten contamination issue? Before I was tested, I was completely unaware I had any issues with gluten. I am the main preparer of food in our house, mostly from scratch, and I cook for a family of 5 (and yes, I am about to test my 3 sons for gluten, and possibly other things, since my genetics were so bad. One gene for celiac, one gene for gluten sensitivity, so they apparently have a 50% chance of having a gluten issue. They have no symptoms.). Is it sufficient if I just don’t eat gluten, or are we talking about “Get a new toaster, new tools,” etc? I really dislike the idea of all my cookware needing replacing. But I’ve read elsewhere on a celiac board such things should be done.
- How much do I need to worry about cutting out eggs? I have a friend who raises ducks for eggs, so I can substitute there, but when I find egg in gluten-free breads and other products, do I need to skip those?
- For now, would I be safer with coconut milk in my coffee instead of almond, since almond was a +1 for me? (I really like my morning cappuccino). Same for vegan butters based on cashew – no go?
- I have been making homemade chicken broth, but since chicken is one of my +2 reactive foods, is that a bad idea?
- I assume no alcohol until...when?
- I think I read on the board that standard recommendation is to skip taking vitamins for now because it is doubtful I could absorb it all (I had been taking a Centrum Silver which says it is GF). However, a few days after stopping the vitamin I turned up with a mouth corner crack (angular chelitis) which I haven’t had for ages. From earlier research I think for me those turn up if I am B-deficient (like after certain antibiotics). As they are painful and hard to get rid of, I returned to the vitamin and the crack went away. Causation or correlation, who knows. Mainly I want to know if I should ditch the vitamin for now, despite cracks.
- Related: when to start any vit D or magnesium supplements?
- The Enterolab report standard language says not to cut out too many things at once, which would leave one hungry, and not to think there’s “nothing to eat.” So for now, how far down the sensitivity chart do I need to cut out? Level 3 (corn and tuna)? Level 2 would be darn hard (chicken, beef, rice, etc.).
- Long term, what do I have to look forward to? If I heal things up, I assume the biggies (gluten, dairy, soy, maybe egg?) will always be off the table, yes? I feel like a GI cripple and wonder how I will be able to do things like go away for a week at music camp, etc., where there is a college cafeteria for participants. It's the highlight of my year and I need to learn to cope.
Thanks in advance for reading all this. I have tried to search through the board for some of this info, but it’s a little like drinking from a fire hose!
Newbie needs help with Enterolab results and diet changes
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Basically, your relatively high test result levels suggest that you have been reacting for several years. Without proper treatment, antibody levels continue to climb and intestinal damage continues to accrue. You seem to be asking for an opinion on how strictly you should adhere to the diet recommendations. If your goal is to control your symptoms by making diet changes, you will have to be very strict. You can't afford to miss even tiny amounts of the things that cause your immune system to react. There are an infinite number of ways to lose this game, and only one way to win — we win by doing everything right (and I mean everything). In contrast, doing even just one thing wrong, can prevent you from ever reaching remission. I know that may sound impossible, but thousands of us have done it successfully.
There's no consistent correlation between symptoms and the level of intestinal damage, so if your symptoms are "mild", lucky you, but that doesn't mean that your CC is not severe.
The safest meats are turkey, lamb, and any wild type meats such as duck, goose, rabbit, pheasant, emu, quail, venison, etc. Carbohydrates are a non-essential part of the human diet. We have to have protein and fat in order to be healthy, but carbs are not an essential diet component. If you want some carbs to consider, try sweet potato, cauliflower, and potatoes, just don't eat potatoes every day. Colored potatoes (red, yellow, etc.) are much easier to digest than Russets. Other carb options are millet, teff, and amaranth. Since you react so strongly against corn, sorghum is probably not an option.
Duck eggs work for many of us, but not for everyone. If you want eggs, try duck eggs (or turkey or pheasant or quail eggs), if you have access to them.)
Soy-free dark chocolate is available, but be very careful with chocolate because it's very high in histamines. If you crave chocolate, that's probably because you have a chronic magnesium deficiency. CC depletes magnesium.
Don't eat any commercially prepared GF bread or pastries while you are trying to recover. Virtually all of us react to them while we're trying to recover. Never use any toaster that has ever had any bread that contained gluten in it.
Coconut milk might be a good choice, but so far, those of us who are sensitive to almonds do just fine with almond milk.
Alcohol causes leaky gut, so use it only in moderation, and only after you have been in remission for a while.
Stay on the Level 1 diet for at least a couple of weeks after you are in solid remission. Your food is your medicine. I would avoid any and all foods that tested 2+ or higher.
If you want broth, make turkey broth, not chicken broth.
If you need B vitamins, use safe brands of activated B vitamins, such as Methyl-Guard, by Thorne Laboratories. There are not enough of most vitamins in Centrum anyway, and most of us can't absorb them because they're in the inactive form.
You should be taking vitamin D and magnesium now, because they're vital for immune system health. If oral magnesium causes diarrhea, wait until after you are in remission, or use magnesium oil on your skin. Make sure the vitamin D and magnesium is a safe brand, such as Doctors Best.
Long-term, gluten, dairy, and soy will be permanent problems, and probably so will the beef, but you may be able to tolerate some of the other foods after a few years of healing. Even if chicken eggs remain a problem, they will probably be OK in baked goods. I had to avoid corn while I was recovering, but I can eat it now. After we recover, most of us can eat salads, and most raw vegetables again.
Recovering is tough, and requires a lot of self-discipline, but you can do it. And the reward is getting a life back that is so much better than spending the rest of our lives in the bathroom.
Good luck on your recovery journey. Any time you're unsure about something, please ask, rather than suffering in silence.
Tex
Basically, your relatively high test result levels suggest that you have been reacting for several years. Without proper treatment, antibody levels continue to climb and intestinal damage continues to accrue. You seem to be asking for an opinion on how strictly you should adhere to the diet recommendations. If your goal is to control your symptoms by making diet changes, you will have to be very strict. You can't afford to miss even tiny amounts of the things that cause your immune system to react. There are an infinite number of ways to lose this game, and only one way to win — we win by doing everything right (and I mean everything). In contrast, doing even just one thing wrong, can prevent you from ever reaching remission. I know that may sound impossible, but thousands of us have done it successfully.
There's no consistent correlation between symptoms and the level of intestinal damage, so if your symptoms are "mild", lucky you, but that doesn't mean that your CC is not severe.
The safest meats are turkey, lamb, and any wild type meats such as duck, goose, rabbit, pheasant, emu, quail, venison, etc. Carbohydrates are a non-essential part of the human diet. We have to have protein and fat in order to be healthy, but carbs are not an essential diet component. If you want some carbs to consider, try sweet potato, cauliflower, and potatoes, just don't eat potatoes every day. Colored potatoes (red, yellow, etc.) are much easier to digest than Russets. Other carb options are millet, teff, and amaranth. Since you react so strongly against corn, sorghum is probably not an option.
Duck eggs work for many of us, but not for everyone. If you want eggs, try duck eggs (or turkey or pheasant or quail eggs), if you have access to them.)
Soy-free dark chocolate is available, but be very careful with chocolate because it's very high in histamines. If you crave chocolate, that's probably because you have a chronic magnesium deficiency. CC depletes magnesium.
Don't eat any commercially prepared GF bread or pastries while you are trying to recover. Virtually all of us react to them while we're trying to recover. Never use any toaster that has ever had any bread that contained gluten in it.
Coconut milk might be a good choice, but so far, those of us who are sensitive to almonds do just fine with almond milk.
Alcohol causes leaky gut, so use it only in moderation, and only after you have been in remission for a while.
Stay on the Level 1 diet for at least a couple of weeks after you are in solid remission. Your food is your medicine. I would avoid any and all foods that tested 2+ or higher.
If you want broth, make turkey broth, not chicken broth.
If you need B vitamins, use safe brands of activated B vitamins, such as Methyl-Guard, by Thorne Laboratories. There are not enough of most vitamins in Centrum anyway, and most of us can't absorb them because they're in the inactive form.
You should be taking vitamin D and magnesium now, because they're vital for immune system health. If oral magnesium causes diarrhea, wait until after you are in remission, or use magnesium oil on your skin. Make sure the vitamin D and magnesium is a safe brand, such as Doctors Best.
Long-term, gluten, dairy, and soy will be permanent problems, and probably so will the beef, but you may be able to tolerate some of the other foods after a few years of healing. Even if chicken eggs remain a problem, they will probably be OK in baked goods. I had to avoid corn while I was recovering, but I can eat it now. After we recover, most of us can eat salads, and most raw vegetables again.
Recovering is tough, and requires a lot of self-discipline, but you can do it. And the reward is getting a life back that is so much better than spending the rest of our lives in the bathroom.
Good luck on your recovery journey. Any time you're unsure about something, please ask, rather than suffering in silence.
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.
Thank you Tex for taking the time to address so many concerns. (Bummer that I put in a deposit for another quarter steer for January!). I really appreciate the generosity. Guess someday I will get a new toaster once I can eat a GF bread (or I guess I can make my own? I'm fine with that - I'm a granddaughter and great granddaughter of a baker!). Do I need a celiac-level of care with my pans and cutting boards? (ie, get my own separate "pure" set)
Many of us are more sensitive to gluten (react to smaller amounts) than the average celiac. In my opinion, it's not necessary to replace all of your utensils unless they are cracked, as long as you always do a very thorough job of washing. Later, when you resume baking, remember that a lot of baking pans retain baked-on residue, so watch for that. Homemade bread, using ingredients known to be safe, is almost always safer than commercially produced bread. Commercial bakers usually use so many ingredients that one or more of them is a problem for many of us.
Small, local bakeries often do a better job of keeping their products safe, as long as they are a dedicated, gluten-free shop, because they get it. They're often owned by someone who has to eat GF. Bigger bakeries aren't as likely to get it, especially if they produce any products that contain gluten.
Anything porous, such as a cutting board, definitely should never be used for food that must remain GF if it has ever been exposed to gluten. That applies to wooden spoons and bowls also. Some of us keep our dedicated utensils in a separate cabinet. If any wheat flour is used in the house, it's almost impossible to keep the fine particles from drifting onto everything, even inside cabinets.
Personally, beef does not cause me to have diarrhea, but it causes bloating, poor digestion, headaches, and upper back pain. So I continue to avoid it. You might be able to tolerate it after you're in remission, but there are at least several others here who have similar reactions to beef. If you try it, watch for symptoms.
Remember, everything I post is my opinion, based on my own and many other's reactions, but there are surely exceptions, because of personal differences.
Tex
Small, local bakeries often do a better job of keeping their products safe, as long as they are a dedicated, gluten-free shop, because they get it. They're often owned by someone who has to eat GF. Bigger bakeries aren't as likely to get it, especially if they produce any products that contain gluten.
Anything porous, such as a cutting board, definitely should never be used for food that must remain GF if it has ever been exposed to gluten. That applies to wooden spoons and bowls also. Some of us keep our dedicated utensils in a separate cabinet. If any wheat flour is used in the house, it's almost impossible to keep the fine particles from drifting onto everything, even inside cabinets.
Personally, beef does not cause me to have diarrhea, but it causes bloating, poor digestion, headaches, and upper back pain. So I continue to avoid it. You might be able to tolerate it after you're in remission, but there are at least several others here who have similar reactions to beef. If you try it, watch for symptoms.
Remember, everything I post is my opinion, based on my own and many other's reactions, but there are surely exceptions, because of personal differences.
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.