Thanks to advice I got on this forum, I am doing very well on my phase one diet. I’ve been tapering down the budesonide – now taking 3mg every 3rd day. I’ve had wonderfully normal stools every day (often twice a day), since December 2nd.
I have two questions, maybe three! First of all, I occasionally get a slight rash and a bit of congestion that lasts a couple of days and then goes away. This must be a histamine response to something, but I don’t know what. My only safe food on the Enterolab test was potatoes and my overall mean value was 47. So I’m eating potatoes, sweet potatoes, duck, safe turkey, shrimp, scallops and crab. I occasionally have a taste of canned peaches or home-made applesauce. I’m using canned coconut milk, and my snacks are “Jacksons” sweet potato chips, which are made with avocado oil.
Prior to getting my test results and eliminating my trigger foods, I had lost 5 pounds, but I haven’t lost any more. I think all the fat in the duck breasts, the liberal use of avocado oil to fry my hashbrowns, and the fat in the canned coconut milk has kept my calorie intake up enough to stay at what is a good weight for me.
I seem to tolerate maple syrup in small amounts -- I mix a teaspoon and a half of maple syrup with a quarter teaspoon of cocoa powder in a cup of coconut milk for a hot drink that slightly resembles hot chocolate, and I have a cup of that daily. Last week I made a tiny batch of chocolates using coconut oil, cocoa powder and maple syrup. My intent was to have just one per day (they are about 3/8” thick and about the size of my thumbnail) -- but they were SO good that I had 5 or 6 of them on Sunday.
I know cocoa is a high-histamine food. This is the only thing I can think of that was “different” in my diet, but I had them on Sunday and didn’t get the rash and stuffy nose until Tuesday night or Wednesday. (It didn’t change my BM at all.) When there’s a histamine response to an allergen, is that different from a response to eating a high-histamine food? How long after eating the food does the reaction usually happen? It seems so delayed, if that’s what it was.
Next question is this – if it was indeed the cocoa, and I eliminate that, and all continues to be fine on the foods I’m currently eating, WHEN could I start reintroduction, and WHICH foods do I start with? I tested a +1 for rice. Should I start with rice? Or just start with some slightly less-cooked fiber in my fruits? I assume that the proteins would be the last to try.
I’ve read SO MUCH of this forum and most of the newsletters, but I haven’t found an answer to this question yet. How do I know when to move from phase 1 to phase 2? Is 5 weeks of normal BM long enough? Or is it just too early yet to make a change? I am capable of being patient, but I’m feeling so good and having such wonderful BMs that I feel it might be possible!
I’m also on 4.5 mg of LDN at bedtime. For the sake of those who might search the forum for information on LDN, I’ll give my experience. I’ve been on it for about a year – I started taking it in January of 2023 because I was dealing with debilitating joint pain that started in August of 2022. I was diagnosed by a rheumatologist as having PolyMyalgia Rheumatica (PMR), and by my naturopath and acupuncturist as having Lyme’s disease. I started steroids in November of 2022, but weaned off them and onto LDN in January of 2023. While using the LDN and having weekly acupuncture (and Chinese herbs), my joint pain COMPLETELY disappeared during this past June. And the intermittent diarrhea I’d had with the joint pain also cleared up completely. My doctor attributed that to the LDN. I had a routine colonoscopy in July and mentioned that I had been having diarrhea off and on for a year, so they did a biopsy. I was diagnosed with MC, but I wasn’t having any symptoms at the time! It wasn’t until September (my mother-in-law died,. followed by an inadvertent gluten exposure that lasted 5 days, and a case of shingles) that I began to have uncontrollable D. So when I started Budesonide, I asked about the LDN.... Should I keep taking it? The consensus amongst my practitioners was YES. I am not sure if it’s part of what is helping with the MC, but I know that it helps me sleep, helps with general aches and pains, and I definitely have more energy when I’m on it.
Sorry this is so long. It’s been quite a year and a half for me, but I feel optimistic, and much of it is the help I’ve received here. Thank you for reading this and hopefully giving some guidance about how and when to proceed!
Joan
When and how to reintroduce foods?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: When and how to reintroduce foods?
Unfortunately, your questions don't have definite answers because were all different. All fish and shellfish have histamine. When quick frozen they only have moderate histamine, but the longer they are thawed at normal refrigeration temperatures, the more histamine they develop. And chocolate is usually a major problem for anyone with histamine issues. I'm not saying you have to avoid all sources of histamine (unless you are extremely sensitive) but you're probably getting more than enough histamine from the shellfish, so that the chocolate is tipping the balance to cause the reactions. We may all be different about the timing, but for me, if I ingest too much histamine, my rash (and itching) begins to show up about half a day later, and spreads to additional locations for about three to maybe four days, depending on the severity of the histamine exposure.
When to try to introduce foods is another tough question. Most of us try to start reintroducing or adding new foods to our diet sooner than we should. For example, I tried to add a food or two beginning about six months after I reached remission, but I wasn't unsuccessful until about a year or more later. And surely we're all different regarding that situation, too. If you read the newsletters published monthly by the Microscopic Colitis Foundation, you should recall that recently the newsletter discussed how and why the intestines heal so slowly (years, not weeks or months).
In other words, when we reach remission, our intestines are only beginning to heal. Complete healing takes from several years to 10 or more, depending on our age. The older we get, the slower our intestines heal, and for some of us, they never heal completely, despite following a squeaky clean diet.
That said, to test a food (and only test one food at a time), eat a small amount of the food one day, and a slightly increasing amount each day for a total of three days. If you don't react by the third day, that food is probably safe to add to your diet. If the trial is successful, you can go on and test the next food. But if it causes a reaction, wait until you've been in remission for a week or so before testing another food.
I hope this helps, and I hope I haven't overlooked some of your questions. The problem with asking multiple questions in one post is that old codger's like me probably won't remember half of the questions by the time we finish reading the post.
Tex
When to try to introduce foods is another tough question. Most of us try to start reintroducing or adding new foods to our diet sooner than we should. For example, I tried to add a food or two beginning about six months after I reached remission, but I wasn't unsuccessful until about a year or more later. And surely we're all different regarding that situation, too. If you read the newsletters published monthly by the Microscopic Colitis Foundation, you should recall that recently the newsletter discussed how and why the intestines heal so slowly (years, not weeks or months).
In other words, when we reach remission, our intestines are only beginning to heal. Complete healing takes from several years to 10 or more, depending on our age. The older we get, the slower our intestines heal, and for some of us, they never heal completely, despite following a squeaky clean diet.
That said, to test a food (and only test one food at a time), eat a small amount of the food one day, and a slightly increasing amount each day for a total of three days. If you don't react by the third day, that food is probably safe to add to your diet. If the trial is successful, you can go on and test the next food. But if it causes a reaction, wait until you've been in remission for a week or so before testing another food.
I hope this helps, and I hope I haven't overlooked some of your questions. The problem with asking multiple questions in one post is that old codger's like me probably won't remember half of the questions by the time we finish reading the post.
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: When and how to reintroduce foods?
Oh, thank you so much, Tex, tat's GREAT information about the shellfish! I didn't know that, and it definitely explains why it seemed that I was ok with chocolate in small quantities and other times I thought I was reacting to it! Of course... it is probably the days that I have shellfish that make it more likely. And it's good to know about thawing and holding shellfish. What I get is flash-frozen, and I thaw it in cold water about 10 minutes before I eat it. Looks like I'm doing something right there!
I did read that newsletter you referred to and was very discouraged by it, but on the other hand, I have to look at the duration of my illness and think that perhaps I've been blessed to be one that might heal faster. When I began the WD in late September last year, I'd already been diagnosed with CC (symptomless at the time) , so my doctor knew of my diagnosis and prescribed the budesonide. I began taking it within 2-3 weeks of the onset of my symptoms. And thankfully, I found this site and forum quickly, so I had my test results in another month.
I apologize for so many questions at once but you answered all but one! When I'm ready to start reintroduction, what food do i start with? Do I just gradually add more fiber, like maybe some nuts or some veggies that aren't entirely MUSH? Or do i start with the lowest item on the list of 11 allergens? (For me, that was rice).
Is it best to save proteins for further down the road?
Thanks in advance - your reply was EXTREMELY helpful!
Joan
I did read that newsletter you referred to and was very discouraged by it, but on the other hand, I have to look at the duration of my illness and think that perhaps I've been blessed to be one that might heal faster. When I began the WD in late September last year, I'd already been diagnosed with CC (symptomless at the time) , so my doctor knew of my diagnosis and prescribed the budesonide. I began taking it within 2-3 weeks of the onset of my symptoms. And thankfully, I found this site and forum quickly, so I had my test results in another month.
I apologize for so many questions at once but you answered all but one! When I'm ready to start reintroduction, what food do i start with? Do I just gradually add more fiber, like maybe some nuts or some veggies that aren't entirely MUSH? Or do i start with the lowest item on the list of 11 allergens? (For me, that was rice).
Is it best to save proteins for further down the road?
Thanks in advance - your reply was EXTREMELY helpful!
Joan
Re: When and how to reintroduce foods?
You may be right about healing relatively quickly and being able to add foods to your diet sooner than most of us for these reasons:
The longer we react, the higher our antibody levels climb, so the longer it takes for our antibody levels to decline, and this is especially important for gluten, since antigliadin antibodies have a 120 day half-life which allows them to remain in circulation for a long time. By contrast, most other food sensitivity antibodies have a five or six day half-life. Because of this, the EnteroLab tests can reliably detect gluten sensitivity for two years or more after gluten is removed from the diet. Other food sensitivities can be accurately detected by the EnteroLab tests approximately 3 to 6 months after they are removed from the diet.
And the longer we react, more damage accrues to our intestines, and probably (although this hasn't been established by research) more damage accrues to the stem cells in the epithelia of our colon, slowing down the healing process even further. So by limiting the extent of that additional damage, you might indeed be able to add foods into your diet sooner.
Which food to try to add first is the $64 question. We are all different, so we all have different sensitivity levels, and different food desires. Don't bother trying to add any of the big four (gluten, casein, soy, eggs) because those are virtually always permanent sensitivities. The safest choices are always foods that EnteroLab does not even offer tests for. The next safest choices would be foods to which the EnteroLab tests showed your lowest scores (in the 11 other antigenic foods category). Don't overdo sugar and fiber early on when trying to add new foods, and since you seem to be sensitive to histamine, don't start with a high histamine food, obviously. Select a food that appeals to you, and should be safe to try.
I hope this helps.
Tex
The longer we react, the higher our antibody levels climb, so the longer it takes for our antibody levels to decline, and this is especially important for gluten, since antigliadin antibodies have a 120 day half-life which allows them to remain in circulation for a long time. By contrast, most other food sensitivity antibodies have a five or six day half-life. Because of this, the EnteroLab tests can reliably detect gluten sensitivity for two years or more after gluten is removed from the diet. Other food sensitivities can be accurately detected by the EnteroLab tests approximately 3 to 6 months after they are removed from the diet.
And the longer we react, more damage accrues to our intestines, and probably (although this hasn't been established by research) more damage accrues to the stem cells in the epithelia of our colon, slowing down the healing process even further. So by limiting the extent of that additional damage, you might indeed be able to add foods into your diet sooner.
Which food to try to add first is the $64 question. We are all different, so we all have different sensitivity levels, and different food desires. Don't bother trying to add any of the big four (gluten, casein, soy, eggs) because those are virtually always permanent sensitivities. The safest choices are always foods that EnteroLab does not even offer tests for. The next safest choices would be foods to which the EnteroLab tests showed your lowest scores (in the 11 other antigenic foods category). Don't overdo sugar and fiber early on when trying to add new foods, and since you seem to be sensitive to histamine, don't start with a high histamine food, obviously. Select a food that appeals to you, and should be safe to try.
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: When and how to reintroduce foods?
Thank you so much! I know it's a tough question because I see how different everyone here is, in their responses to different triggers, but it's really helpful to have this general guidance.
I'm going to wait until I'm done with the budesonide in early March. If I can maintain good BMs without it, I'll start slowly and test carefully.
I do seem to respond well to fasting, so I feel I have something to fall back on if needed. And I have the help of my acupuncturist... and my primary care doctor is an excellent Integrative physician who listens well and is supportive. And this forum! I have much to be thankful for!
I'm going to wait until I'm done with the budesonide in early March. If I can maintain good BMs without it, I'll start slowly and test carefully.
I do seem to respond well to fasting, so I feel I have something to fall back on if needed. And I have the help of my acupuncturist... and my primary care doctor is an excellent Integrative physician who listens well and is supportive. And this forum! I have much to be thankful for!
Re: When and how to reintroduce foods?
Yes, definitely wait until at least several weeks after the budesonide treatment ends because budesonide tends to mask food reactions, and over 80% of MC patients who respond to budesonide tend to relapse within a few weeks after the treatment ends.
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.
Re: When and how to reintroduce foods?
Thanks to your advice I'm continuing to stay the course and have not attempted to reintroduce any foods. I'm now taking one budesonide (3mg) once every 4th day and still having excellent stools.
However, I'm increasingly bothered by rashes that seem to crop up about the time I go to bed! They are on my arms and abdomen - little itchy bumps. During the day, the ones on my arms disappear and those on my abdomen fade significantly and don't itch. In the evenings theycome back, and seem to be getting increasingly worse.
I've read a lot on this forum and also in the Microscopic Colitis book about mast cells but for some reason I'm having trouble wrapping my head around this. Eliminating high-histamine foods in my diet (shellfish and chocolate) didn't seem to have any effect on the rash. If I understand correctly, excess numbers of mast cells can cause diahhrea. I don't have diahhrea, just patches of itchy rash.
The rash actually started on the 3rd day of my treatment with budesonide, and I read that this can be a side-effect of the drug. It seems that with the small amount I'm now taking, a reaction like this would be diminishing instead of increasing!
Where should I start to try to get this rash under control? Eliminate each of the 12 foods im currently eating, one at a time, to see if its related to a food sensitivity? Or take a DAO enzyme like histaresist? Try an antihistamine like claritin? I'm just not sure where to start!
However, I'm increasingly bothered by rashes that seem to crop up about the time I go to bed! They are on my arms and abdomen - little itchy bumps. During the day, the ones on my arms disappear and those on my abdomen fade significantly and don't itch. In the evenings theycome back, and seem to be getting increasingly worse.
I've read a lot on this forum and also in the Microscopic Colitis book about mast cells but for some reason I'm having trouble wrapping my head around this. Eliminating high-histamine foods in my diet (shellfish and chocolate) didn't seem to have any effect on the rash. If I understand correctly, excess numbers of mast cells can cause diahhrea. I don't have diahhrea, just patches of itchy rash.
The rash actually started on the 3rd day of my treatment with budesonide, and I read that this can be a side-effect of the drug. It seems that with the small amount I'm now taking, a reaction like this would be diminishing instead of increasing!
Where should I start to try to get this rash under control? Eliminate each of the 12 foods im currently eating, one at a time, to see if its related to a food sensitivity? Or take a DAO enzyme like histaresist? Try an antihistamine like claritin? I'm just not sure where to start!
Re: When and how to reintroduce foods?
Please note that there are two different kinds of histamine reactions — IgE and IgA. IgE reactions cause classic allergy symptoms, whereas IgA reactions cause symptoms similar to food sensitivities.Like me, you seem to be having IgE histamine reactions. In your situation, I would look at items in my diet, such as the shellfish, as possible triggers for the histamine reaction. Also note that tea often causes histamine reactions, and coffee is almost as bad, as are carbonated drinks. If avoiding shellfish for a few days, and the beverages I mentioned, doesn't resolve the problem, then it might possibly be associated with the budesonide.
If we become deficient in diamine oxidase (DAO) enzyme, And many of us do, as a peripheral effect of MC, our ability to purge excess histamine becomes compromised, and our histamine level begins to build up. And once the level becomes elevated above are threshold for a reaction, it tends to recede very slowly. If we take in even moderate amounts of histamine, rather than recede, the level continues to build, consequently, histamine intolerance can be a persistent and frustrating problem.
Reactions to exposures tend to last three or four days for me, provided that I'm very careful to correct my diet, and not allow any high or moderate histamine foods into my diet.
I hope this helps.
Tex
If we become deficient in diamine oxidase (DAO) enzyme, And many of us do, as a peripheral effect of MC, our ability to purge excess histamine becomes compromised, and our histamine level begins to build up. And once the level becomes elevated above are threshold for a reaction, it tends to recede very slowly. If we take in even moderate amounts of histamine, rather than recede, the level continues to build, consequently, histamine intolerance can be a persistent and frustrating problem.
Reactions to exposures tend to last three or four days for me, provided that I'm very careful to correct my diet, and not allow any high or moderate histamine foods into my diet.
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: When and how to reintroduce foods?
Thank you! I have already eliminated the shellfish and chocolate (maybe 10 days ago) and I don't drink coffee, tea or soft drinks at all.
The odd thing is that the rash is my only symptom; I have no respiratory allergic symptoms like stuffy or runny nose, congestion, headaches, fatigue, etc. So perhaps it is the budesonide....
But do you think the budesonide could actually cause an increasingly troublsome rash as the dose is tapered? I'm taking only 3mg once every 4th day. I just have a hard time believing it could be causing an increase in the rash even as I taper down.
My best guess is the DAO issue, as you mentioned. I have read your reports about your issues with taking a DAO supplement, so I'm cautious, but do you think it might be worth trying something like Histaresist?
The odd thing is that the rash is my only symptom; I have no respiratory allergic symptoms like stuffy or runny nose, congestion, headaches, fatigue, etc. So perhaps it is the budesonide....
But do you think the budesonide could actually cause an increasingly troublsome rash as the dose is tapered? I'm taking only 3mg once every 4th day. I just have a hard time believing it could be causing an increase in the rash even as I taper down.
My best guess is the DAO issue, as you mentioned. I have read your reports about your issues with taking a DAO supplement, so I'm cautious, but do you think it might be worth trying something like Histaresist?
Re: When and how to reintroduce foods?
It's possible that the budesonide could still be causing the problem, if you're allergic to it, but I believe I would start looking at other things. For example, do you use a nonallergenic detergent for clothes and dish washing? Are all your cosmetics, soap, shampoo, toothpaste, lotions, etc. free of allergens? When the symptoms started, had you by any chance just started wearing any clothing article made with a "new" synthetic material, or a new wristwatch, necklace, wristband, etc.?
Can you think of anything that was changed about the time the symptoms started, or a week or so before the symptoms started? Did you change brands of any supplements about then? There should be clues somewhere, if we can just find them. Keeping a daily log of everything you ingest and everything that touches your skin, and your reactions, might provide a clue. The problem might even be due to something you automatically give a free pass, because it never caused a reaction in the past.
Tex
Can you think of anything that was changed about the time the symptoms started, or a week or so before the symptoms started? Did you change brands of any supplements about then? There should be clues somewhere, if we can just find them. Keeping a daily log of everything you ingest and everything that touches your skin, and your reactions, might provide a clue. The problem might even be due to something you automatically give a free pass, because it never caused a reaction in the past.
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: When and how to reintroduce foods?
Joan, I developed a similar symptom to you about 9 days ago. Considerable itching accompanied by small colorless bumps on my skin (although not everywhere). My itching is the most persistent along my scalp, and worse at night (early AM). The bumps have disappeared, but the itching continues. I started taking an antihistamine but it does not seem to help that much (maybe the itching would be a lot worse if I didn't take the antihistamine?).
I had started drinking weak coffee over a month ago and eating pistachios about the same time. I suspect those two are the culprits. The itching I have is similar to what I get in the winter with the cold dry air, and this itching did start about the time we had a cold front come in, but I'm running a humidifier, so I'm pretty sure this is a histamine reaction. I quit the pistachios 3 days ago and stopped the coffee yesterday. I'll see if I'm better in a few days.
John R.
I had started drinking weak coffee over a month ago and eating pistachios about the same time. I suspect those two are the culprits. The itching I have is similar to what I get in the winter with the cold dry air, and this itching did start about the time we had a cold front come in, but I'm running a humidifier, so I'm pretty sure this is a histamine reaction. I quit the pistachios 3 days ago and stopped the coffee yesterday. I'll see if I'm better in a few days.
John R.
Re: When and how to reintroduce foods?
Your description does sound exactly like what I'm experiencing, John. Even down to the fact that some of the worst itchy bumps are along my scalp!
It's odd that the itching doesn't bother me during the day, but flares up during the night. I love to sleep warm,.with a big down blanket and a layer of wool under that. I am almost sure that the warmth brings on the itching. Sometimes I get up and walk around the house to cool down, and that's about the only thing that helps me get back to sleep without itching. I'll be interested to know how it goes for you without the coffee and pistachios!
Today I picked up a supplement that contains vitamin C and quercetin after reading about quercetin on the forum here. I found a number of pubmed articles about the relationship between MC and mast cell issues, and also this helpful article, which inspired me to try it.
https://www.eds.clinic/articles/quercet ... ntolerance
I also was just reviewing notes from a dermatology appointment I had in December. I was dealing with a lingering rash from shingles that was driving me insane with itching. I went back to the doctor notes and found the names of the OTC lotion she recommended. It is called Sarna lotion. She recommended keeping it in the fridge... apparently excellent for itchy rashes. I did a search here and found the same advice. It's obviously not "the answer" in terms of getting to the root cause of the histamine issues,.but getting decent sleep is important for healing, too!
Thank you, Tex, for reminding me about the other things that enter the body - - through the skin. I've been meaning to order samples of makeup from one of the companies listed here. It very well could be that there is soy in what I'm putting on my skin. I'm going to do that tonight before I go to bed!
It's odd that the itching doesn't bother me during the day, but flares up during the night. I love to sleep warm,.with a big down blanket and a layer of wool under that. I am almost sure that the warmth brings on the itching. Sometimes I get up and walk around the house to cool down, and that's about the only thing that helps me get back to sleep without itching. I'll be interested to know how it goes for you without the coffee and pistachios!
Today I picked up a supplement that contains vitamin C and quercetin after reading about quercetin on the forum here. I found a number of pubmed articles about the relationship between MC and mast cell issues, and also this helpful article, which inspired me to try it.
https://www.eds.clinic/articles/quercet ... ntolerance
I also was just reviewing notes from a dermatology appointment I had in December. I was dealing with a lingering rash from shingles that was driving me insane with itching. I went back to the doctor notes and found the names of the OTC lotion she recommended. It is called Sarna lotion. She recommended keeping it in the fridge... apparently excellent for itchy rashes. I did a search here and found the same advice. It's obviously not "the answer" in terms of getting to the root cause of the histamine issues,.but getting decent sleep is important for healing, too!
Thank you, Tex, for reminding me about the other things that enter the body - - through the skin. I've been meaning to order samples of makeup from one of the companies listed here. It very well could be that there is soy in what I'm putting on my skin. I'm going to do that tonight before I go to bed!
Re: When and how to reintroduce foods?
You're correct about the effects of heat. If I have even the slightest suggestion of a rash, a warm shower will immediately prompt it to begin itching, and if it's already itching, a warm shower will noticeably intensify the itching. Working on a hot, sweaty job, especially in the summer, has basically the same effect.
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.