Hi MC family - I am very new to this forum and this disease. I posted (see below) my EnteroLab results with a request for help in interpretation. I am reposting in hopes of getting a response. I am so confused since my results show me to sensitive (+2 or +3) to everything. How do I proceed from here?
I am very grateful for any help. Thank you
Gail
Good evening...I am newly diagnosed w lymphocytic MC. Symptomatic first August 2020, diagnosed September. I have never had any problems in my 63 yrs (except migraines), have always eaten whatever I wanted. No allergies, no other health problems. This has truly hit me!
My EnteroLab results are as follows but I am unsure how to interpret them and would greatly appreciate any help you can give me. I have been taking 9 mg of budesonide since end of September and have been feeling almost normal. My diet consists of rice Chex, Cheerios, chicken, white rice, gluten free bread, turkey, avocado, canned peaches, macadamia milk.
I do not have any 0+ or 1+ reactions, only 2+ and 3+. It seems very ominous, like everything is going to effect me. Could the budesonide be masking symptoms? I have no idea how to proceed and am ever thankful for any help????
Quantitative Microscopic Fecal Fat Score 421 Units (Normal Range is less than 300 Units)
Fecal Anti-gliadin IgA 229 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 36 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 37 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 59 Units (Normal Range is less than 10 Units)
Mean Value 11 Antigenic Foods 41 Units (Normal Range is less than 10 Units)
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: Beef
Meat toward which you were next most immunologically reactive: Chicken
Meat toward which you displayed intermediate immunologic reactivity: Tuna
Meat toward which you displayed the least immunologic reactivity: Pork
Nuts:
Nut toward which you displayed the most immunologic reactivity: Walnut
Nut toward which you displayed intermediate immunologic reactivity: Almond
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.
Newly diagnosed need EnteroLab interpretation help
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hey Cakes...
I will hop in here since no one else is! My testing looked similar to yours with no zero or ones. I had done the other panel a few years before and don’t remember numbers exactly, but showed I reacted above the limit to gluten and was right at 10 with dairy and soy. My egg number was like a 6.
So, because my life was crashing down around me I basically ate pressure cooked squashes, carrots, zucchini. Lamb and game meat (elk, antelope, some pheasant )....and turkey. Sweet potatoes every which way, coconut milk, taro chips, avocados ..avoided peanuts and almonds and slathered sunflower butter on things.
Budesonide was tried twice over the years with no real improvement. Biopsies on my second colonoscopy showed collagenous colitis. Eventually I tried cholestyramine and saw slow improvement (long long story)..in my case it was the magic ticket. I take HUGE AMOUNTS OF IT compared to everyone else . My mom has control now on 4 packets a day...I need 8???? .
Maybe you need to try cholestyramine ...
Laine
I will hop in here since no one else is! My testing looked similar to yours with no zero or ones. I had done the other panel a few years before and don’t remember numbers exactly, but showed I reacted above the limit to gluten and was right at 10 with dairy and soy. My egg number was like a 6.
So, because my life was crashing down around me I basically ate pressure cooked squashes, carrots, zucchini. Lamb and game meat (elk, antelope, some pheasant )....and turkey. Sweet potatoes every which way, coconut milk, taro chips, avocados ..avoided peanuts and almonds and slathered sunflower butter on things.
Budesonide was tried twice over the years with no real improvement. Biopsies on my second colonoscopy showed collagenous colitis. Eventually I tried cholestyramine and saw slow improvement (long long story)..in my case it was the magic ticket. I take HUGE AMOUNTS OF IT compared to everyone else . My mom has control now on 4 packets a day...I need 8???? .
Maybe you need to try cholestyramine ...
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Hello Gail,
Welcome to the group. I wondered how I missed your previous post, but I see that your post count is still listed as 1 (under your avatar), so apparently, your previous message wasn't actually posted to the board for some reason or other.
You weren't exaggerating — you do have a high sensitivity level to numerous foods. The high scores suggest that you have probably been reacting for years, whether you have been symptomatic or not. Anyway, with antibody levels that high, you probably have extensive intestinal damage, including the small intestine (as evidenced by your elevated fecal fat score). Yes, the budesonide is masking your symptoms, if you're feeling almost normal, but you'll need to modify your diet so that your intestines can heal, or you'll relapse when your doctor ends the budesonide treatment. Your EnteroLab scores are relatively high, suggesting that healing might take longer than normal. I say "might" because inflammation levels don't always translate linearly to clinical symptoms. You might just as likely heal relatively quickly.
The rice Chex, Cheerios, chicken, white rice, and gluten free bread are all probably causing inflammation, They all contain ingredients that cause you to react. Since none of the common grains are safe, if you want a substitute, you'll have to consider something such as millet or amaranth. The problem with millet is that it's historically notorious for being contaminated with gluten, but maybe they've tightened their standards, since I last checked. Bob's red mill is a good source of uncommon (safe) grains.
Besides turkey, safe meats include lamb, duck, goose, quail, pheasant, rabbit, venison (including elk), antelope, etc. Avoid bison, because these days, they all contain DNA from domestic beef cattle.
I see that potatoes are out, but you should be able to eat substitutes such as sweet potatoes and even cauliflower, which simulates mashed potatoes when overcooked and mashed.
After you've been in remission for a couple of years, it's possible that you might be able to reintroduce some of the foods in the "11 other antigenic foods" group, but you appear to be very sensitive to virtually all of them now.
I see that Laine has already made some good suggestions. Maybe someone else will have some more food suggestions. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. I wondered how I missed your previous post, but I see that your post count is still listed as 1 (under your avatar), so apparently, your previous message wasn't actually posted to the board for some reason or other.
You weren't exaggerating — you do have a high sensitivity level to numerous foods. The high scores suggest that you have probably been reacting for years, whether you have been symptomatic or not. Anyway, with antibody levels that high, you probably have extensive intestinal damage, including the small intestine (as evidenced by your elevated fecal fat score). Yes, the budesonide is masking your symptoms, if you're feeling almost normal, but you'll need to modify your diet so that your intestines can heal, or you'll relapse when your doctor ends the budesonide treatment. Your EnteroLab scores are relatively high, suggesting that healing might take longer than normal. I say "might" because inflammation levels don't always translate linearly to clinical symptoms. You might just as likely heal relatively quickly.
The rice Chex, Cheerios, chicken, white rice, and gluten free bread are all probably causing inflammation, They all contain ingredients that cause you to react. Since none of the common grains are safe, if you want a substitute, you'll have to consider something such as millet or amaranth. The problem with millet is that it's historically notorious for being contaminated with gluten, but maybe they've tightened their standards, since I last checked. Bob's red mill is a good source of uncommon (safe) grains.
Besides turkey, safe meats include lamb, duck, goose, quail, pheasant, rabbit, venison (including elk), antelope, etc. Avoid bison, because these days, they all contain DNA from domestic beef cattle.
I see that potatoes are out, but you should be able to eat substitutes such as sweet potatoes and even cauliflower, which simulates mashed potatoes when overcooked and mashed.
After you've been in remission for a couple of years, it's possible that you might be able to reintroduce some of the foods in the "11 other antigenic foods" group, but you appear to be very sensitive to virtually all of them now.
I see that Laine has already made some good suggestions. Maybe someone else will have some more food suggestions. Again, welcome aboard, and please feel free to ask anything.
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.
Gail,
By the way, did you have arthritis symptoms (aching joints) before you started taking the budesonide? If you didn't, you may be able to eat potatoes. If you did, you may need to continue to avoid them, at least until you're securely in stable remission.
Tex
By the way, did you have arthritis symptoms (aching joints) before you started taking the budesonide? If you didn't, you may be able to eat potatoes. If you did, you may need to continue to avoid them, at least until you're securely in stable remission.
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.
Overwhelmed newbie
Thank you Laine and Tex for your help. I am pretty sure my overwhelmed feeling was just bumped up a few (?) notches, but I am very appreciative for your help.
Tex - I had limited arthritis symptoms in my hand. Flared up rarely. Does that suggest that potatoes (white AND sweet) are to be avoided??
I will go and investigate your recommendations
I am sure I will be back with more questions. Thank you again
Tex - I had limited arthritis symptoms in my hand. Flared up rarely. Does that suggest that potatoes (white AND sweet) are to be avoided??
I will go and investigate your recommendations
I am sure I will be back with more questions. Thank you again
Cakes6847
Sweet potatoes should be OK. White potatoes may be OK, especially if you rotate them in your diet so that you don't eat them every day. Red potatoes and yellow potatoes are easier to digest than Russets for MC patients still in recovery, due to the type of starch they contain.
Tex
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.
Good evening - i have another question regarding my incredibly limited diet allowances.
I understand that turkey (and the other game meats) should be safe. The sweet potatoes are safe.
I researched amaranth and it seems to be more of a cereal. Not sure what else it can be used for.
I understand a limited amount of very-well cooked vegetables are also permitted.
Are there any fruits i can eat? What about milks - i have been using macademia milk occasionally. Is it safe?
Is coconut safe?
Last question (for now) - i have been on the budesonide for about 8 weeks and i am symptom-free. Is it time to begin a taper? Will a taper be safe considering that the foods i have been eating (which I thought were safe) are contraindicated for me. Do i need to spend more time trying to stick with these recommendations before i try to go forward?
I am ever grateful for your help. This is certainly a life altering situation.
Gail
I understand that turkey (and the other game meats) should be safe. The sweet potatoes are safe.
I researched amaranth and it seems to be more of a cereal. Not sure what else it can be used for.
I understand a limited amount of very-well cooked vegetables are also permitted.
Are there any fruits i can eat? What about milks - i have been using macademia milk occasionally. Is it safe?
Is coconut safe?
Last question (for now) - i have been on the budesonide for about 8 weeks and i am symptom-free. Is it time to begin a taper? Will a taper be safe considering that the foods i have been eating (which I thought were safe) are contraindicated for me. Do i need to spend more time trying to stick with these recommendations before i try to go forward?
I am ever grateful for your help. This is certainly a life altering situation.
Gail
Cakes6847
You might be able to eat canned peaches or apricots (because they're cooked), but go easy, especially at first, because fructose (the primary sugar in fruits) is more difficult to digest than sucrose, and most of us have to minimize sugar (or avoid it) when we're not in remission. macademia milk should be ok, but I can't be sure, because we're all different. Coconut is safe for all of us. Refined coconut oil is excellent for frying, as it has a relatively high flash point.
For most people, a safe time to lower the dose is when they notice the first signs of constipation. At 8 weeks, your GI doc may be pressuring you to reduce the dose, but if you haven't been avoiding gluten for at least several weeks or more (preferably a month or more), you may well relapse. Other foods (other than gluten), only require 5 or 6 days of avoiding them. Most docs want to taper the dose too soon, and then when 85 % (according to published research) of their patients relapse, they wonder why.
Tex
For most people, a safe time to lower the dose is when they notice the first signs of constipation. At 8 weeks, your GI doc may be pressuring you to reduce the dose, but if you haven't been avoiding gluten for at least several weeks or more (preferably a month or more), you may well relapse. Other foods (other than gluten), only require 5 or 6 days of avoiding them. Most docs want to taper the dose too soon, and then when 85 % (according to published research) of their patients relapse, they wonder why.
Truer words were never spoken (or keyed into a computer).Gail wrote:This is certainly a life altering situation.
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.
Food choices and lab results
Good evening- Tex I have some more questions:
- Is the paleo diet one that I could follow, keeping in mind to avoid my certain food sensitivities (as reported by EnteroLab?
- Is cassava and/or coconut flour something that I could safely use?
- Bone broth (it seems) is typically made from chicken or beef bones. I am sensitive to both chicken and beef. Can I make a broth w either?
Also, I had serum levels drawn. My magnesium was 2.3 and Vit D was 40.8. Would you recommend 300 mg of Magnesium per day and 5000iu of Vit D daily?
Thank you very much for all your help.
Gail [/i]
- Is the paleo diet one that I could follow, keeping in mind to avoid my certain food sensitivities (as reported by EnteroLab?
- Is cassava and/or coconut flour something that I could safely use?
- Bone broth (it seems) is typically made from chicken or beef bones. I am sensitive to both chicken and beef. Can I make a broth w either?
Also, I had serum levels drawn. My magnesium was 2.3 and Vit D was 40.8. Would you recommend 300 mg of Magnesium per day and 5000iu of Vit D daily?
Thank you very much for all your help.
Gail [/i]
Cakes6847
Hi Gail,
Laine's response is probably the best option, but you could probably also use turkey bones, or bones from whatever meat you can eat safely.
Tex
Laine's response is probably the best option, but you could probably also use turkey bones, or bones from whatever meat you can eat safely.
Yes the paleo diet automatically eliminates the worst allergens, so it's a very good place to start. You would still have to avoid chicken eggs, and minimize a few other foods that the paleo diet allows, such as fiber, fruit, and honey, but otherwise, with a little fine tuning, it should work well for you.Gail wrote:- Is the paleo diet one that I could follow, keeping in mind to avoid my certain food sensitivities (as reported by EnteroLab?
Yes, those are generally safe for most of us. And some folks claim that coconut helps with healing.Gail wrote:- Is cassava and/or coconut flour something that I could safely use?
That sounds reasonable, but if you notice any increased diarrhea, you might have to reduce the magnesium, and/or change the type (at least until you're in remission). Your vitamin D level is not bad, but I will admit that I try to keep my own level above 60 because I believe that higher levels significantly help healing and disease resistance. And higher levels almost surely help to reduce the risk of catching COVID-19, plus preventing serious symptoms if you should catch COVID-19.Gail wrote:Also, I had serum levels drawn. My magnesium was 2.3 and Vit D was 40.8. Would you recommend 300 mg of Magnesium per day and 5000iu of Vit D daily?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I was living in the Denver area when I was making all that bone broth and lamb bones were easy to get since they raise a lot of lamb on the western slope in Colorado. I would think any sort of meat locker that processes game meat would also be able to get you bones. I got my bones mostly at Whole Foods..and they were advertised as local to Colorado.
Laine
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Gail,
I forgot to mention that back when I was reacting, I had arthritis symptoms so bad that many days, I had to use a cane to get around. The fingers in my right hand were growing crooked and twisted, with red, swollen joints. When I finally perfected my diet, all those arthritis symptoms stopped. That was 20 years ago, and my fingers are still crooked to prove it, but changing my diet stopped all the symptoms at that point. I threw the cane away. All that time, and right up to the present, I never stopped eating potatoes. But back in those days, there was no test available to test them, either. I never even considered that I might be sensitive to potatoes, because only certain proteins cause reactions, (and carbs don't).
There's only one exception to the protein exclusivity rule — alpha-gal. Galactose-alpha-1,3-galactose (aka alpha-gal) is a sugar unique to mammals (except for humans). If a Lone Star tick bites someone, the bite transmits alpha-gal sugar molecules into the person's body, and this can cause them to develop an allergy to the sugar, which means that they will also be allergic to all mammal meat. The syndrome is known as mammalian meat allergy. or alpha-gal allergy.
Regarding amaranth: It's probably mostly used for flour. I'll bet Bob's Red Mill offers it.
Tex
I forgot to mention that back when I was reacting, I had arthritis symptoms so bad that many days, I had to use a cane to get around. The fingers in my right hand were growing crooked and twisted, with red, swollen joints. When I finally perfected my diet, all those arthritis symptoms stopped. That was 20 years ago, and my fingers are still crooked to prove it, but changing my diet stopped all the symptoms at that point. I threw the cane away. All that time, and right up to the present, I never stopped eating potatoes. But back in those days, there was no test available to test them, either. I never even considered that I might be sensitive to potatoes, because only certain proteins cause reactions, (and carbs don't).
There's only one exception to the protein exclusivity rule — alpha-gal. Galactose-alpha-1,3-galactose (aka alpha-gal) is a sugar unique to mammals (except for humans). If a Lone Star tick bites someone, the bite transmits alpha-gal sugar molecules into the person's body, and this can cause them to develop an allergy to the sugar, which means that they will also be allergic to all mammal meat. The syndrome is known as mammalian meat allergy. or alpha-gal allergy.
Regarding amaranth: It's probably mostly used for flour. I'll bet Bob's Red Mill offers it.
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.