Hi all,
I had been doing very well since my last flare last fall, ending the entocort mid-December 2016. I had a good January and mid-February I started having intermittent problems.
It's been 2 weeks of pretty steady D but it's not the same as the WD "mud" that I usually get with CC. I started Pepto Bismol today and upped my antihistamines.
I recently changed my cereal from Corn Chex to Rice Chex about mid-January. I had testing done in 2013, (I think I shared those results), that show a 3+ reactivity to rice and cashews and a 1+ to tuna and walnuts. I filed the report away because overall I was in the normal range 9 units and didn't pay any attention to it. So I have been eating rice Chex in the am and homemade chicken & rice soup at lunch and lately have not feeling very well after lunch. Is this possible that the rice is having that effect on me? I also have been adding walnuts to my homemade gf cookies and have had a few cashews here and there. Did I screw myself up? This is all I can think of, as I have been very vigilant at following gf, cf, ef, sf and low fodmap diet.
As my GI Dr pointed out, I seem to flare every 6 months or so and I have noticed that it's usually spring and fall. In a past post someone recommended antihistamines, which I take every am.
I do not want to go to the Dr., so I hope that these changes along with the Pepto Bismol work. The next batch of homemade chicken soup will not have rice just more well cooked carrots, no more walnuts in my cookies or cashews here and there.
Thanks in advance for any advice,
Susanne
An update, spring & fall are bad for me
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Suzy,
Like you I seem to do best in a deep freeze of Winter! I don't know what kind of flour you are using in your cookies, many of them can be cross contaminated with gluten and can slowly sneak up on you....I find that if I make a cake or try to do any baking, even with just 2 flours, I'll feel poorly for awhile. I would just go back to your safe ingredients for awhile and see if you feel better in a couple weeks. It may just be the spring fever
P.S. I would love your cookie recipe just to have a look and see if I could possibly try it!
Like you I seem to do best in a deep freeze of Winter! I don't know what kind of flour you are using in your cookies, many of them can be cross contaminated with gluten and can slowly sneak up on you....I find that if I make a cake or try to do any baking, even with just 2 flours, I'll feel poorly for awhile. I would just go back to your safe ingredients for awhile and see if you feel better in a couple weeks. It may just be the spring fever
P.S. I would love your cookie recipe just to have a look and see if I could possibly try it!
Vanessa
Hi Susanne,
Your main EnteroLab test results can be found at the link below, if you ever need to review them, but the results of the test for the other 11 antigenic foods isn't there. However, I note that you have a double DQ2 gene combination which means that you are more likely to have an increased sensitivity level, and you may be prone to more sensitivities than most of us. A double DQ2 combination implies an especially high risk of celiac disease or non-celiac gluten sensitivity along with an increased sensitivity to even tiny amounts of cross contamination by gluten in your diet.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089
But if you don't notice any symptoms until after a meal of chicken soup and rice, and your EnteroLab test showed a 3+ result for rice, that suggests that the combination of Rice Chex in the morning followed by rice for lunch might represent an accumulated "dose" of rice that exceeds your tolerance level threshold for rice, resulting in a reaction.
I believe that you have done a good job of analyzing the problem, and you're on the right track. If I were in that situation I would try something besides rice in either or both meals (and I gather that this is what you are planning). If that doesn't work, I would try switching from chicken to turkey, to see if that makes a difference. If you lived in the South, I would suggest corn grits as a possible substitute for rice (corn grits even work for breakfast in the South), but that may be an acquired taste, so you might not find grits appealing.
And Vanessa brings up a very good point. Many of the GF flours have been shown to have a cross-contamination problem with small to moderate amounts of gluten. It's one of the dirty little secrets of the GF processed foods industry. For some of this, that may not be significant, but because of your double DQ2 status, you might possibly react to gluten cross-contamination even at levels below the legal 20 ppm level permitted by the labeling laws, and claimed to be safe by the "experts". With your double DQ2 status, just avoiding those flours for a while (during pollen season) might possibly make the difference.
Yes, you are correct that the seasonal pollen exposure significantly increases our sensitivity level in general (at least it does for many of us, including me). So we have to be more careful during those times.
I hope that some of this is helpful.
Tex
Your main EnteroLab test results can be found at the link below, if you ever need to review them, but the results of the test for the other 11 antigenic foods isn't there. However, I note that you have a double DQ2 gene combination which means that you are more likely to have an increased sensitivity level, and you may be prone to more sensitivities than most of us. A double DQ2 combination implies an especially high risk of celiac disease or non-celiac gluten sensitivity along with an increased sensitivity to even tiny amounts of cross contamination by gluten in your diet.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089
But if you don't notice any symptoms until after a meal of chicken soup and rice, and your EnteroLab test showed a 3+ result for rice, that suggests that the combination of Rice Chex in the morning followed by rice for lunch might represent an accumulated "dose" of rice that exceeds your tolerance level threshold for rice, resulting in a reaction.
I believe that you have done a good job of analyzing the problem, and you're on the right track. If I were in that situation I would try something besides rice in either or both meals (and I gather that this is what you are planning). If that doesn't work, I would try switching from chicken to turkey, to see if that makes a difference. If you lived in the South, I would suggest corn grits as a possible substitute for rice (corn grits even work for breakfast in the South), but that may be an acquired taste, so you might not find grits appealing.
And Vanessa brings up a very good point. Many of the GF flours have been shown to have a cross-contamination problem with small to moderate amounts of gluten. It's one of the dirty little secrets of the GF processed foods industry. For some of this, that may not be significant, but because of your double DQ2 status, you might possibly react to gluten cross-contamination even at levels below the legal 20 ppm level permitted by the labeling laws, and claimed to be safe by the "experts". With your double DQ2 status, just avoiding those flours for a while (during pollen season) might possibly make the difference.
Yes, you are correct that the seasonal pollen exposure significantly increases our sensitivity level in general (at least it does for many of us, including me). So we have to be more careful during those times.
I hope that some of this is helpful.
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.
Hi Tex & Vanessa,
I live in NC, we had and still have very high pollen counts. I have had grits, but never thought of having them for breakfast. I'm going to give it a try. The gf flour I used is supposed to be certified gluten free but it is made with rice flour and brown rice flour. I will find a different homemade gf cookie to have, I might have a recipe for one with almond flour. The rice is gone, as is cashews and walnuts. I don't even remember the last time that I had tuna. I didn't like it plain, so I just don't eat it. I'm really sick of feeling this way, so all that stuff is gone.
The last visit to the GI wasn't encouraging. I was told that I will always have this and my flares seem to occur every 6 months or so, which they do. Where he agreed that food had everything to do with it, on the other hand he told me there was nothing I could do about it, meaning cross contamination is everywhere.
I recently received information concerning the maternal side of my family where there seems to be colon issues. I asked wondering if there was anyone else in the family that was like me. A first cousin has crohn's and now has pancreatic cancer, he has many food allergies. A first cousin has diverticulitis and now has an ostomy. My brother has diverticulitis and my mothers sister had colon cancer. My other 4 siblings do not have any issues.
Tex, thanks so much for the information concerning my double DQ2 gene combination. BTW - I eat so much chicken (there was no reaction in the Enterolab test) but will try turkey instead just to see. I'm going to scan and email those results to you.
Thanks so much,
Susanne
I live in NC, we had and still have very high pollen counts. I have had grits, but never thought of having them for breakfast. I'm going to give it a try. The gf flour I used is supposed to be certified gluten free but it is made with rice flour and brown rice flour. I will find a different homemade gf cookie to have, I might have a recipe for one with almond flour. The rice is gone, as is cashews and walnuts. I don't even remember the last time that I had tuna. I didn't like it plain, so I just don't eat it. I'm really sick of feeling this way, so all that stuff is gone.
The last visit to the GI wasn't encouraging. I was told that I will always have this and my flares seem to occur every 6 months or so, which they do. Where he agreed that food had everything to do with it, on the other hand he told me there was nothing I could do about it, meaning cross contamination is everywhere.
I recently received information concerning the maternal side of my family where there seems to be colon issues. I asked wondering if there was anyone else in the family that was like me. A first cousin has crohn's and now has pancreatic cancer, he has many food allergies. A first cousin has diverticulitis and now has an ostomy. My brother has diverticulitis and my mothers sister had colon cancer. My other 4 siblings do not have any issues.
Tex, thanks so much for the information concerning my double DQ2 gene combination. BTW - I eat so much chicken (there was no reaction in the Enterolab test) but will try turkey instead just to see. I'm going to scan and email those results to you.
Thanks so much,
Susanne
HI Susanne,
If it is any consolation MAST cells are driving me crazy right now too...I'll be good one day and because I'm not studied enough to know exactly how much of certain things I should or should not be having I give myself fits in the histamine dept. I feel for you....its a constant give an take during Spring and Fall.
Hugs
E
If it is any consolation MAST cells are driving me crazy right now too...I'll be good one day and because I'm not studied enough to know exactly how much of certain things I should or should not be having I give myself fits in the histamine dept. I feel for you....its a constant give an take during Spring and Fall.
Hugs
E
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
I'll bet your GI doc just doesn't want to get into the complicated business of trying to learn how to prescribe a safe diet to someone who has numerous food sensitivities. That's not easy. By comparison, prescribing drugs to treat IBDs is as easy as falling off a log.Susanne wrote:The last visit to the GI wasn't encouraging. I was told that I will always have this and my flares seem to occur every 6 months or so, which they do. Where he agreed that food had everything to do with it, on the other hand he told me there was nothing I could do about it, meaning cross contamination is everywhere.
If your GF flour mix was only rice, then it shouldn't carry a significant risk of cross-contamination. Rice is typically handled separately from all the other grains, so it tends to stay very pure. IOW, rice elevators (storage facilities) tend to handle rice, and only rice; and other elevators handle all of the other grains and seeds produced in that region. Part of the problem may be the brown rice — too much fiber. The other big cross-contamination risk occurs at the mill, where the flour is made. If that mill handles other grains or seeds, then the risk of cross-contamination goes way up, because the machinery does not lend itself well to being completely cleaned out between batches, so the operators usually just discard the output for a while when switching to another grain, and then they start bagging it when they "think" it's pure.
I suspect that intestinal issues are far more common in family histories and in the general population than anyone realizes. We tend to talk about such issues much more freely today, especially on this forum, but a generation or so ago, our parents and grandparents would have found such candid discussions of such delicate matters to be disgusting and revolting, something that they would have never done, at least not in polite company.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
in a discussion with Erica, we talked about what supplements Erica should increase for change of season to help manage histamine/mast cell inflammation.
increasing Vit D3, magnesium, and P5P (active form of B6) will help the body cope with the additional histamine levels in the body, and being mindful of lowering intake of any high histamine food items.
hope this helps Suzie
increasing Vit D3, magnesium, and P5P (active form of B6) will help the body cope with the additional histamine levels in the body, and being mindful of lowering intake of any high histamine food items.
hope this helps Suzie
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi all,
Thanks so much for your responses. I've been feeling sorry for myself and getting mad at myself at the same time.
Gabs, Thanks so much. I still don't know if I have enough magnesium, but I do take 5,000 IU of D3 (is that enough) and I will have to look into P5P. I'll have to check to see if any of what I'm eating is a high histamine food.
Tex, the GF flour had other flours in it besides rice and brown rice, I've stopped using it. I cut rice out completely and I'm taking Pepto Bismol, 6 tablets a day. I just checked in with the GI Dr. to make sure I had the dosage right. I'm down to 1 bout of diarrhea, in the am, a day but my intestines are talking to me constantly, they are not very happy. I'm not eating much and I have been drinking a lot of water, staying close to the toilet. I feel weak and tired. The Dr. doesn't want to see me, that's good, and wants me to call in when I'm finished with the 8 weeks worth of Pepto with a report. I bought grits but I bought the wrong one. I bought Quaker Instant grits and checked when I got home to see if they were certified gluten free, they are not, they are going back to the store. Which grits are gluten free? I have to tell you, I'm starving!! I cut so much out of my diet and I'm sick of the foods that I can eat.
LOL, my 13 year old dog is on a limited ingredient diet because of bouts of diarrhea. She started with diarrhea on Monday. It was in springtime and fall last year, just like me. Like mother, like doggie daughter!!!
Thanks again,
Susanne
Thanks so much for your responses. I've been feeling sorry for myself and getting mad at myself at the same time.
Gabs, Thanks so much. I still don't know if I have enough magnesium, but I do take 5,000 IU of D3 (is that enough) and I will have to look into P5P. I'll have to check to see if any of what I'm eating is a high histamine food.
Tex, the GF flour had other flours in it besides rice and brown rice, I've stopped using it. I cut rice out completely and I'm taking Pepto Bismol, 6 tablets a day. I just checked in with the GI Dr. to make sure I had the dosage right. I'm down to 1 bout of diarrhea, in the am, a day but my intestines are talking to me constantly, they are not very happy. I'm not eating much and I have been drinking a lot of water, staying close to the toilet. I feel weak and tired. The Dr. doesn't want to see me, that's good, and wants me to call in when I'm finished with the 8 weeks worth of Pepto with a report. I bought grits but I bought the wrong one. I bought Quaker Instant grits and checked when I got home to see if they were certified gluten free, they are not, they are going back to the store. Which grits are gluten free? I have to tell you, I'm starving!! I cut so much out of my diet and I'm sick of the foods that I can eat.
LOL, my 13 year old dog is on a limited ingredient diet because of bouts of diarrhea. She started with diarrhea on Monday. It was in springtime and fall last year, just like me. Like mother, like doggie daughter!!!
Thanks again,
Susanne
Quaker is probably safe, they're just not certified GF(they might be cross-contaminated). These are certified GF:
Medford Farms
Palmeto Farms
Sam Mills
Tex
Medford Farms
Palmeto Farms
Sam Mills
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.
Hi Tex,
The Pepto Bismol is kicking in finally, not soon enough, it was a bad week. I lost a s**tful of weight, lol!!
I found Bob's Red Mill GF grits, I hope that they are ok. I finally found them at the 4th food store that I went to. I couldn't find the ones you mentioned. Being the Jersey girl that I am and only having grits a couple of times, what do you put on them, if anything? I added a little pure maple syrup and had them for lunch today. It was nice having something that filled me up. I guess I wasn't eating enough and between that and the diarrhea I was feeling very lightheaded a lot.
Thanks again,
Susanne
The Pepto Bismol is kicking in finally, not soon enough, it was a bad week. I lost a s**tful of weight, lol!!
I found Bob's Red Mill GF grits, I hope that they are ok. I finally found them at the 4th food store that I went to. I couldn't find the ones you mentioned. Being the Jersey girl that I am and only having grits a couple of times, what do you put on them, if anything? I added a little pure maple syrup and had them for lunch today. It was nice having something that filled me up. I guess I wasn't eating enough and between that and the diarrhea I was feeling very lightheaded a lot.
Thanks again,
Susanne
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Susanne
glad the pepto has kicked in and helping
Re the products, what i have done in Australia is to see if the safe products are sold online. I have found that it is much easier to order them online and get them delivered, rather than go to multiple stores etc. Sometimes it actually works out cheaper!
re the lightheadedness - try to have good serves of protein throughout the day, this helped me big time.
glad the pepto has kicked in and helping
Re the products, what i have done in Australia is to see if the safe products are sold online. I have found that it is much easier to order them online and get them delivered, rather than go to multiple stores etc. Sometimes it actually works out cheaper!
re the lightheadedness - try to have good serves of protein throughout the day, this helped me big time.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
trip planned for Tuesday and I'm doomed - an update
Hi all,
I'm down to a very minimal diet. I saw 2 normans in the 2 weeks that I took Pepto, but had to discontinue it due to the fact that the ringing in my ears has become increasingly worse. The Dr. put me on 1 Entocort a day because I had those 2 normans, I'm back to D now.
I'm supposed to fly to NYC on Tuesday to see my kids and the rest of my family and I'm feeling like crap. This is exactly what happened 6 months ago, the last time I went to visit, I had a terrible trip because I had a flare up and I felt like crap. I'm considering cancelling.
I'm on a bare bones diet, I don't know what else I can cut out. The corn grits have become a meal for me, I dribble a little pure maple syrup on it.
When this flare in under control I am planning on asking for a referral to see a dietician/nutritionist hopefully one that is familiar with collagenous colitis. I think it would help me. I was also wondering if I should repeat the Enterolab tests that I previously had done.
I'm miserable and cranky. I haven't seen the inside of my gym in 3 weeks, I haven't been up to it.
Well, thanks for listening and any advice is appreciated.
Susanne
I'm down to a very minimal diet. I saw 2 normans in the 2 weeks that I took Pepto, but had to discontinue it due to the fact that the ringing in my ears has become increasingly worse. The Dr. put me on 1 Entocort a day because I had those 2 normans, I'm back to D now.
I'm supposed to fly to NYC on Tuesday to see my kids and the rest of my family and I'm feeling like crap. This is exactly what happened 6 months ago, the last time I went to visit, I had a terrible trip because I had a flare up and I felt like crap. I'm considering cancelling.
I'm on a bare bones diet, I don't know what else I can cut out. The corn grits have become a meal for me, I dribble a little pure maple syrup on it.
When this flare in under control I am planning on asking for a referral to see a dietician/nutritionist hopefully one that is familiar with collagenous colitis. I think it would help me. I was also wondering if I should repeat the Enterolab tests that I previously had done.
I'm miserable and cranky. I haven't seen the inside of my gym in 3 weeks, I haven't been up to it.
Well, thanks for listening and any advice is appreciated.
Susanne