One year later and still need help!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
One year later and still need help!
Hello everyone. I am once again seeking wisdom from you all. I am over a year since my CC diagnosis, and still have not seen Norman! I am tapering Budesonide which I have been taking since Feb 2020! I am tapering very slowly, allowing at least 8 weeks between reductions, and am down to 1 pill every other day. I don't have D very often, but stools are still very soft, coating the toilet and me. My GI doctor told me that indicates inflammation in my intestines. Is that true? Most of what she told me is not true. I have 1-4 BMs per day, sometimes after every meal, and sometimes it feels very urgent, but then it's not! Sometimes I feel like I am constipated, but it is still very soft, just hard to get out. (Sorry for the gross detail) I did Enterolab testing but I was taking Budesonide for about 7 months when I did the test. Dr. Fine assured me that would not affect the results. I had no reactions over a 2, and did not react to caesin or eggs. My IgA score was 24 units. I have been GF, SF, DF, stay away from eggs and fish (I did have a slight reaction to tuna). I have been on a very limited diet this whole time and I don't vary it. The only thing I can see that might have affected me is I didn't realize that even a trace amount of gluten is bad. My husband and son eat gluten and I wasn't being very careful with countertops, cutting boards, etc. I am doing my best to avoid cross contamination now. Also, there is alot of stress - our adult son was just put on full disability and he lives with us. His health is not good and it is heart breaking to watch. I try not to let it affect me, but not sure how to do that. I tried different brands of cholestyramine including Sandoz, but it causes terrible stomach pains and eventually D. I tried taking one Imodium a day, but eventually it caused constipation and I am not sure if it's safe to take it daily long term. Should I try convincing my PCP to prescribe LDN? I think that's the one thing I have not tried. Oh, I also use baking soda as toothpaste, use olive oil as a moisturizer, and Bag Balm as lip balm. I have itchy skin rashes that come and go in random places. Should I just be happy that I don't have D any more? Maybe this is how it will be for me and I will learn to live with it? I just thought I would have norman by now. Any advice will be so much appreciated. I realize stress makes it so much worse, so I try really hard to take one day at a time and breathe. As always, I am so thankful that God led me to this group, and to Tex's book which I use like a Bible!
Re: One year later and still need help!
Hi Jeannie,
Here are my thoughts: Based on your description, your diet has almost surely been cross-contaminated with gluten, all long. And a little gluten, regularly, can be worse than not even following a gluten-free diet, in the first place. So if you tightened down your diet recently, for all practical purposes, you started over, at square one, on the diet. That means at least six to eight weeks (or more) before you will begin to see any results. The big question is, "Did you tighten your diet enough to actually get results, this time?" The GF diet has to be done very strictly, in order to get results.
In the meantime, as you slowly purge your body of the residual gluten, up to 8 tablets of Imodium is generally safe to use for most people. It's a very safe medication. But obviously, don't use more than necessary, or it may cause constipation.
I hope this helps.
Tex
Here are my thoughts: Based on your description, your diet has almost surely been cross-contaminated with gluten, all long. And a little gluten, regularly, can be worse than not even following a gluten-free diet, in the first place. So if you tightened down your diet recently, for all practical purposes, you started over, at square one, on the diet. That means at least six to eight weeks (or more) before you will begin to see any results. The big question is, "Did you tighten your diet enough to actually get results, this time?" The GF diet has to be done very strictly, in order to get results.
In the meantime, as you slowly purge your body of the residual gluten, up to 8 tablets of Imodium is generally safe to use for most people. It's a very safe medication. But obviously, don't use more than necessary, or it may cause constipation.
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: One year later and still need help!
Thank you, Tex, for responding. You confirmed my fear, that it's been gluten cross contamination all along, but it was masked by the Budesonide. It must be very similar to celiac disease. Am I safe to put my dishes in the dishwasher with gluten containing dishes? The dishes are all rinsed first. At Christmas I did bake cookies, but didn't eat them. Now I am thinking I shouldn't even touch flour.
The thought of starting over is disheartening, but hopefully since I didn't actually eat gluten, maybe I have healed somewhat. Would LDN help?
Thanks again, Tex, for sharing your knowledge. I don't know what I would do without you and everyone here.
Jeannie
The thought of starting over is disheartening, but hopefully since I didn't actually eat gluten, maybe I have healed somewhat. Would LDN help?
Thanks again, Tex, for sharing your knowledge. I don't know what I would do without you and everyone here.
Jeannie
Re: One year later and still need help!
As long as none of the dishes have any cracks, none of them are porous, and the dishwasher rinses them properly, using a dishwasher should work fine. Wooden bowls, wooden spoons, and cutting boards, should always be kept away from your food, because they will be contaminated. And so will toasters. Dishes used for baked goods should be carefully inspected, because any baked-on residue will probably contain gluten.
And yes, preparing anything with wheat flour will get gluten all over everything. Every time someone opens a bag of flour, the fine dust will drift all over the house and settle on everything, including dishes in cabinets and utensils in drawers. A bag of wheat flour in the house virtually guarantees that your food will be cross-contaminated with gluten, no matter how careful you, or everyone else might be.
Despite the fact that most gastroenterologists believe that MC affects and inflames only the colon, there are many published medical articles in medical journals that prove that most MC patients have an inflamed small intestine, also. The damage to the villi of the small intestine is not as severe as with celiac disease, but the inflammation is the same type as with celiac disease. The damage level to the lining of the small intestine is usually limited to a Marsh 1 level or below, whereas fully-developed celiac disease has a Marsh damage level of 4. So yes, MC is very similar to celiac disease, only it's much more difficult to treat because of all the additional food sensitivities that most MC patients have. This is discussed in detail in my book.
Regarding LDN, very often it will help someone who has other autoimmune issues, and if those issues are preventing them from reaching remission with their MC, then using LDN may also help to get their MC into remission. But as far as directly helping MC, when no other autoimmune issues are the problem, so far, as far as I can tell by their posts, no one here has been able to get any benefit from using LDN when trying to specifically treat their MC.
Tex
And yes, preparing anything with wheat flour will get gluten all over everything. Every time someone opens a bag of flour, the fine dust will drift all over the house and settle on everything, including dishes in cabinets and utensils in drawers. A bag of wheat flour in the house virtually guarantees that your food will be cross-contaminated with gluten, no matter how careful you, or everyone else might be.
Despite the fact that most gastroenterologists believe that MC affects and inflames only the colon, there are many published medical articles in medical journals that prove that most MC patients have an inflamed small intestine, also. The damage to the villi of the small intestine is not as severe as with celiac disease, but the inflammation is the same type as with celiac disease. The damage level to the lining of the small intestine is usually limited to a Marsh 1 level or below, whereas fully-developed celiac disease has a Marsh damage level of 4. So yes, MC is very similar to celiac disease, only it's much more difficult to treat because of all the additional food sensitivities that most MC patients have. This is discussed in detail in my book.
Regarding LDN, very often it will help someone who has other autoimmune issues, and if those issues are preventing them from reaching remission with their MC, then using LDN may also help to get their MC into remission. But as far as directly helping MC, when no other autoimmune issues are the problem, so far, as far as I can tell by their posts, no one here has been able to get any benefit from using LDN when trying to specifically treat their MC.
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: One year later and still need help!
Thanks again, Tex. I couldn't sleep last night, having trouble getting my anxiety under control. I will read about gluten again in your book. I have been so focused on finding hidden gluten in foods and other products that I didn't pay much attention to cross contamination in my kitchen until I read a post here recently talking about what you said, that an open bag of flour gets into the cabinets and contaminates everything. I am so discouraged & hoping that I don't relapse into WD 24/7 again.
I will not pursue LDN and I will beg my husband to get rid of the wheat flour. He loves to bake sourdough bread, which is a very sticky dough, and is probably a huge culprit. It's good to know that I can use the dishwasher. I now have my own pans and cooking utensils. There is one area of the kitchen that only I use. I am praying that 6-8 weeks will be enough to turn this old ship around!
Thanks again Tex for sharing your wisdom. Back to reading your book.
Most sincerely,
Jeannie
I will not pursue LDN and I will beg my husband to get rid of the wheat flour. He loves to bake sourdough bread, which is a very sticky dough, and is probably a huge culprit. It's good to know that I can use the dishwasher. I now have my own pans and cooking utensils. There is one area of the kitchen that only I use. I am praying that 6-8 weeks will be enough to turn this old ship around!
Thanks again Tex for sharing your wisdom. Back to reading your book.
Most sincerely,
Jeannie
Re: One year later and still need help!
Jeannie and Tex,
I agree that the single most important element in reducing inflammation and managing collagenous colitis is a diet that eliminates the foods one reacts to. But although a strict G/F, D/F, S/F, E/F, low-histamine diet helped me enormously, some symptoms persisted. I don’t think cross-contamination was responsible, since I wasn’t eating out, and our household has been gluten, dairy and soy free for several years. Although my husband occasionally eats eggs, he uses a dedicated pan, utensils, etc. Nonetheless, intermittent flares and reactions persisted long after my diet had diminished the continual W/D, cramps, nausea, weight loss, gurgling, etc.
I wondered, as you did Jeanne: “Should I just be happy that I don't have (continual) D any more? Maybe this is how it will be for me and I will learn to live with it?”
Tex, as you indicated, many LDN users (including myself) have multiple, auto-immune issues. These seem to be interdependent and overlapping though, making them difficult to address individually. For me it seemed that my other AI issues, worsened after CC took hold, rather than those issues having been an impediment to CC remission.
LDN is alleged to benefit multiple systems, and although it was MC that prompted my interest, the first benefits I noticed were improved sleep, energy levels and outlook, reduced anxiety, and drastically reduced itching and skin issues. MC symptoms diminished concurrently, so for me this approach made a lot of sense. I still maintain a strict diet, however I’ve since been able to reintroduce many fruits, veggies, grains, and some nuts, seeds and fish. For most of the prior 3 years I’d eaten only 5 foods, so this was a major boon to my microbiome diversity.
Actually it seems like I’m now able to eat small amounts of virtually anything with only brief minor repercussions. But I haven’t yet tried the high histamine foods that were most problematic for me, notably citrus, spinach, avocados and especially chocolate.
Jeannie your post mentioned anxiety, sleeplessness and itching, and for me improvement in those areas was noticeable in just a week or two. The current stress of being a caregiver for your son must be enormous. Stress has always been my biggest trigger not only for D, but also for the other issues I mentioned. Even moreso than diet.
When I first read about LDN I was skeptical and thought it sounded too good to be true. It took me over 2 years to try it and I might not have, if I hadn’t known someone who’d been taking it for a year with very positive results. So eventually I thought what have I got to lose other than the cost of the Rx? It’s proven to be better than I expected. I began taking it about 2 weeks into the Covid lockdown and can’t imagine having gotten through the last year (including wildfire evacuation) without it.
There have been many studies regarding the alleged benefits of LDN, most notably in regard to dermatological issues, MS, and the other IBD’s: Crohn’s and UC. Websites with lots of good info:
https://ldnresearchtrust.org
https://www.ldnscience.org/research
I hadn’t looked at these in ages. Apparently they’ve been updated with lots of new info and research. No doubt there’s also a Facebook group.
Jeannie, I’m not necessarily trying to change your mind--just wanted to present a different perspective.
Hope you begin feeling better soon.
With best regards,
Teri
I agree that the single most important element in reducing inflammation and managing collagenous colitis is a diet that eliminates the foods one reacts to. But although a strict G/F, D/F, S/F, E/F, low-histamine diet helped me enormously, some symptoms persisted. I don’t think cross-contamination was responsible, since I wasn’t eating out, and our household has been gluten, dairy and soy free for several years. Although my husband occasionally eats eggs, he uses a dedicated pan, utensils, etc. Nonetheless, intermittent flares and reactions persisted long after my diet had diminished the continual W/D, cramps, nausea, weight loss, gurgling, etc.
I wondered, as you did Jeanne: “Should I just be happy that I don't have (continual) D any more? Maybe this is how it will be for me and I will learn to live with it?”
Tex, as you indicated, many LDN users (including myself) have multiple, auto-immune issues. These seem to be interdependent and overlapping though, making them difficult to address individually. For me it seemed that my other AI issues, worsened after CC took hold, rather than those issues having been an impediment to CC remission.
LDN is alleged to benefit multiple systems, and although it was MC that prompted my interest, the first benefits I noticed were improved sleep, energy levels and outlook, reduced anxiety, and drastically reduced itching and skin issues. MC symptoms diminished concurrently, so for me this approach made a lot of sense. I still maintain a strict diet, however I’ve since been able to reintroduce many fruits, veggies, grains, and some nuts, seeds and fish. For most of the prior 3 years I’d eaten only 5 foods, so this was a major boon to my microbiome diversity.
Actually it seems like I’m now able to eat small amounts of virtually anything with only brief minor repercussions. But I haven’t yet tried the high histamine foods that were most problematic for me, notably citrus, spinach, avocados and especially chocolate.
Jeannie your post mentioned anxiety, sleeplessness and itching, and for me improvement in those areas was noticeable in just a week or two. The current stress of being a caregiver for your son must be enormous. Stress has always been my biggest trigger not only for D, but also for the other issues I mentioned. Even moreso than diet.
When I first read about LDN I was skeptical and thought it sounded too good to be true. It took me over 2 years to try it and I might not have, if I hadn’t known someone who’d been taking it for a year with very positive results. So eventually I thought what have I got to lose other than the cost of the Rx? It’s proven to be better than I expected. I began taking it about 2 weeks into the Covid lockdown and can’t imagine having gotten through the last year (including wildfire evacuation) without it.
There have been many studies regarding the alleged benefits of LDN, most notably in regard to dermatological issues, MS, and the other IBD’s: Crohn’s and UC. Websites with lots of good info:
https://ldnresearchtrust.org
https://www.ldnscience.org/research
I hadn’t looked at these in ages. Apparently they’ve been updated with lots of new info and research. No doubt there’s also a Facebook group.
Jeannie, I’m not necessarily trying to change your mind--just wanted to present a different perspective.
Hope you begin feeling better soon.
With best regards,
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Re: One year later and still need help!
Teri thank you so very much for your response! Your story gives me hope! I have always had issues with morning D and anxiety even before diagnosis. I will most certainly read about LDN in the links that you posted! The anxiety, lack of sleep, and D create a vicious circle! My diet is very limited and I thought I was getting better and could re-introduce a few different foods, but now is not the time for that. The itching sometimes drives me crazy. Did you have a difficult time convincing your doctor to prescribe LDN?
Again, thank you Teri for sharing your experience with me. I appreciate it more than I can say!
Hope you are having a nice weekend!
Jeannie
Again, thank you Teri for sharing your experience with me. I appreciate it more than I can say!
Hope you are having a nice weekend!
Jeannie
Re: One year later and still need help!
My PCP was surprisingly open to prescribing LDN. Admittedly one of the reasons I waited so long to ask was that I expected her to decline. Early last March, when she prescribed gabapentin for a pinched nerve, I sent her links to some LDN trials and studies on neuropathic pain, IBD’s, urticaria, etc. A few days later she contacted the compounding pharmacy for dosage instructions, and prescribed it for urticaria and collagenous colitis, rather than for the pinched nerve. In general I think DO’s might be more inclined to prescribe LDN than MD’s.
Best,
Teri
Best,
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Re: One year later and still need help!
Thank you Teri!'
Jeannie
Jeannie