Hello, everyone!
I’ve been rummaging through the varies posts here online and have been so grateful to find a solid forum with individuals who are giving good advice and encouragement. Thank you!
My MC diagnosis was official about 3 months ago (I’m going on month 8 of the symptoms). As a little background information, my mother’s side has extensive digestive issues including multiple celiac, colitis, and colon cancer diagnoses.
As a result of my colonoscopy a few months ago, I was given the MC diagnosis as well as a celiac diagnosis from blood tests taken at the same time. My doctor has prescribed Asacol, and I’ve been taking it for the last few months with no improvement. I realize that this is a slow acting drug, and I don’t particularly want to start steroids anytime soon.
I have been GF for about a year now and was doing great on my GF diet until about 8 months ago when everything went south. I haven’t had a solid BM since then and have been struggling with the typical symptoms (gas, gloating, D – very, very urgent at times).
I’m looking for advice on what “they next step” would be for me. Since my diagnosis, I have continued my GF diet but am now also grain, starch, and sugar free (except for honey). I’ve also been making my own yogurt per the SCD’s recommendation. Nothing that I have found makes it better or worse. Regarding dairy, I’m eating the SCD yogurt and aged cheeses (nothing fake).
Any help or advice would be greatly appreciated! I have another appointment with the doc next week as he wanted to see me at 3 months. I think we’ll be talking about steroids… uggg…
Newbie looking for diet/supplement help
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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texasemily1980
- Posts: 4
- Joined: Tue Jun 26, 2012 7:23 am
- Location: Missouri
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Hi Emily! Welcome to our little internet family. Good for you going grain, starch, and sugar free! It sounds like you are already starting to take care of the things your body needs so that you can get your life back!It sounds to me like your body is alerting you to additional intolerances. As you may have read on here, our bodies seem to work on the most offensive intolerance first (i.e., gluten). When the antibodies from that one go down, the body apparently starts working on the next worse intolerance. For me, soy was the next worse one, and over the course of the last 21 months you can see by the information under my photo what I have had to eliminate.
I suspect that your body is trying to alert you to a casein (dairy) intolerance. It seems like most of us have this in addition to our gluten intolerance. Casein is in every form of dairy product, including butter and those from goats or sheep. Getting rid of dairy seems to bother people more than getting rid of gluten--lots more mourning over its loss, in other words. But before you consider going on steroids, I would suggest that you cut every source of dairy out of your diet.
I don't take any medicine, but lots of people on the forum do, and will be along to give you advice about that.
Welcome again!
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Hi Emily,
Welcome to the board. I agree with Marliss. It's the primary protein (casein) in dairy products that causes the most problems for us, because it generates the same type of autoimmune reaction as gluten. While it's true that anyone with enteritis is lactose intolerant, that problem is relatively minor (compared with casein sensitivity), because lactose intolerance simply involves the inability to digest lactose due to a deficiency of lactase enzyme. Casein sensitivity causes the production of anti-casein antibodies.
The typical hierarchy of food sensitivities is gluten, casein, soy, eggs, etc., in that order. You can track down problem foods by trial and error, or an elimination diet followed by food challenges, or you can order stool tests from EnteroLab in dallas to identify the major food sensitivities.
With any luck at all, you can avoid the use of drugs if you want, because either food sensitivities or drugs are the cause of the inflammation, so avoiding the problem foods and/or drugs will bring remission. The anti-inflammatory drugs can help to suppress inflammation, but they cannot prevent it from reforming -- only diet changes can prevent it from reforming.
For some of us, Asacol makes our symptoms worse, because not only does Asacol contain lactose, but its active ingredient is mesalamine, which is a derivative of salicylic acid, and anyone who is sensitive to NSAIDs will also be sensitive to mesalamine. In case your doctor didn't mention it, all NSAIDs should be avoided by anyone who has MC, because NSAIDs are a leading cause of MC. For anyone sensitive to them, NSAIDs promote the production of leukotrienes, which cause inflammation.
http://www.nejm.org/doi/full/10.1056/NE ... 3263381320
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. I agree with Marliss. It's the primary protein (casein) in dairy products that causes the most problems for us, because it generates the same type of autoimmune reaction as gluten. While it's true that anyone with enteritis is lactose intolerant, that problem is relatively minor (compared with casein sensitivity), because lactose intolerance simply involves the inability to digest lactose due to a deficiency of lactase enzyme. Casein sensitivity causes the production of anti-casein antibodies.
The typical hierarchy of food sensitivities is gluten, casein, soy, eggs, etc., in that order. You can track down problem foods by trial and error, or an elimination diet followed by food challenges, or you can order stool tests from EnteroLab in dallas to identify the major food sensitivities.
With any luck at all, you can avoid the use of drugs if you want, because either food sensitivities or drugs are the cause of the inflammation, so avoiding the problem foods and/or drugs will bring remission. The anti-inflammatory drugs can help to suppress inflammation, but they cannot prevent it from reforming -- only diet changes can prevent it from reforming.
For some of us, Asacol makes our symptoms worse, because not only does Asacol contain lactose, but its active ingredient is mesalamine, which is a derivative of salicylic acid, and anyone who is sensitive to NSAIDs will also be sensitive to mesalamine. In case your doctor didn't mention it, all NSAIDs should be avoided by anyone who has MC, because NSAIDs are a leading cause of MC. For anyone sensitive to them, NSAIDs promote the production of leukotrienes, which cause inflammation.
http://www.nejm.org/doi/full/10.1056/NE ... 3263381320
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.
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texasemily1980
- Posts: 4
- Joined: Tue Jun 26, 2012 7:23 am
- Location: Missouri
Update on my diagnosis
Hello, friends –
I thought I would send a quick message to let you guys know about my progress and to see if I could get a few questions answered from those who have gone through this. I was given Asacol for 2 months – nothing improved. My doc then put me on Pepto for 3 months – and things greatly improved. I also stopped eating most dairy during the Pepto regimen, and overall, things definitely improved. The urgency, frequency, and consistency were definitely on their way up.
Now after being off of the Pepto for roughly a month, things have starting declining again, and I’m trying to decide why. Option 1 – I need to be stronger with my diet. Although I am strict about the gluten and cow dairy, I do admit that I will eat goat cheese weekly and a portion of potato or rice monthly. Is this enough to keep my gut from healing itself? Option 2 – the Pepto didn’t “fix” the problem but was just helping with the symptoms.
I am mostly curious about the diet – about how strict I really need to be. I feel like I’m 12 asking it this way, but I’m trying to get a good grasp on what I need to do. Currently, the D is back in full-swing, minus the gas and bloating. It’s really a matter of the actual physical consistency of the D at this point. Any ideas?
I thought I would send a quick message to let you guys know about my progress and to see if I could get a few questions answered from those who have gone through this. I was given Asacol for 2 months – nothing improved. My doc then put me on Pepto for 3 months – and things greatly improved. I also stopped eating most dairy during the Pepto regimen, and overall, things definitely improved. The urgency, frequency, and consistency were definitely on their way up.
Now after being off of the Pepto for roughly a month, things have starting declining again, and I’m trying to decide why. Option 1 – I need to be stronger with my diet. Although I am strict about the gluten and cow dairy, I do admit that I will eat goat cheese weekly and a portion of potato or rice monthly. Is this enough to keep my gut from healing itself? Option 2 – the Pepto didn’t “fix” the problem but was just helping with the symptoms.
I am mostly curious about the diet – about how strict I really need to be. I feel like I’m 12 asking it this way, but I’m trying to get a good grasp on what I need to do. Currently, the D is back in full-swing, minus the gas and bloating. It’s really a matter of the actual physical consistency of the D at this point. Any ideas?
Hi Emily,
It's probably the goat cheese. Those of us who are sensitive to casein seem to react to any type of dairy products because the amino acid chain that defines the casein in goat cheese is similar enough to the amino acid chain that defines cow's casein, that our immune system tends to treat them the same. With very few exceptions, for most of us, potatoes and rice are not a problem.
Pepto-Bismol (bismuth subsalicylate) works similarly to the other anti-inflammatory medications. It helps to suppress the inflammation. However, like any other med, it cannot prevent new inflammation from developing. Only diet changes can do that.
Based on probability, as determined by our combined experiences here, the next most likely food would be soy (about half of us are sensitive to soy). So you might try avoiding soy for a week or so. If that doesn't do the trick, the next most likely food candidate would be eggs. Assuming that you have been gluten-free for about 4 months now, you should see a reasonably prompt response to removing any other food sensitivities from your diet. IOW, if soy is a problem, then removing it should bring noticeable improvement within less than a week (though times sometimes vary, depending on individual responses).
On the other hand, if you haven't been gluten free for at least several months, then you just may need more healing time, because it can take a long time for the intestines to heal from gluten damage.
Regarding the need for a strict diet: Despite what our doctors claim, most of us find that we are at least as sensitive to gluten and other food sensitivities as the average celiac, and some of us are much more sensitive than most celiacs. That means that most of us have to be more careful than most people who don't have this problem can even imagine. For many of us, a tiny bread crumb can cause a reaction. And the problem is if we get a crumb every day, or every other day, our intestines will never have a chance to heal. It's a tough problem, especially if we buy commercially-processed GF foods, because many of them have tiny amounts of cross-contamination, and it's enough to cause problems for us.
And eating away from home is even riskier, because unless we really know what we are doing, and go to great lengths to avoid gluten/dairy/soy/etc., we will get regular doses of allergens from cross-contamination introduced by well-meaning but unqualified people, and this is sufficient to keep us reacting indefinitely.
Never be embarrassed to ask questions, because I'll guarantee that precious few doctors in the world truly understand how insidious the cross-contamination problem is for people who have food sensitivities. So we can hardly expect chefs, food servers, and even other family members to get it right, unless they have a heck of a lot of training under the supervision of someone who really knows what she or he is doing.
Thanks for the update. I hope that you can track down the problem quickly, and get back into remission.
Tex
It's probably the goat cheese. Those of us who are sensitive to casein seem to react to any type of dairy products because the amino acid chain that defines the casein in goat cheese is similar enough to the amino acid chain that defines cow's casein, that our immune system tends to treat them the same. With very few exceptions, for most of us, potatoes and rice are not a problem.
Pepto-Bismol (bismuth subsalicylate) works similarly to the other anti-inflammatory medications. It helps to suppress the inflammation. However, like any other med, it cannot prevent new inflammation from developing. Only diet changes can do that.
Based on probability, as determined by our combined experiences here, the next most likely food would be soy (about half of us are sensitive to soy). So you might try avoiding soy for a week or so. If that doesn't do the trick, the next most likely food candidate would be eggs. Assuming that you have been gluten-free for about 4 months now, you should see a reasonably prompt response to removing any other food sensitivities from your diet. IOW, if soy is a problem, then removing it should bring noticeable improvement within less than a week (though times sometimes vary, depending on individual responses).
On the other hand, if you haven't been gluten free for at least several months, then you just may need more healing time, because it can take a long time for the intestines to heal from gluten damage.
Regarding the need for a strict diet: Despite what our doctors claim, most of us find that we are at least as sensitive to gluten and other food sensitivities as the average celiac, and some of us are much more sensitive than most celiacs. That means that most of us have to be more careful than most people who don't have this problem can even imagine. For many of us, a tiny bread crumb can cause a reaction. And the problem is if we get a crumb every day, or every other day, our intestines will never have a chance to heal. It's a tough problem, especially if we buy commercially-processed GF foods, because many of them have tiny amounts of cross-contamination, and it's enough to cause problems for us.
And eating away from home is even riskier, because unless we really know what we are doing, and go to great lengths to avoid gluten/dairy/soy/etc., we will get regular doses of allergens from cross-contamination introduced by well-meaning but unqualified people, and this is sufficient to keep us reacting indefinitely.
Never be embarrassed to ask questions, because I'll guarantee that precious few doctors in the world truly understand how insidious the cross-contamination problem is for people who have food sensitivities. So we can hardly expect chefs, food servers, and even other family members to get it right, unless they have a heck of a lot of training under the supervision of someone who really knows what she or he is doing.
Thanks for the update. I hope that you can track down the problem quickly, and get back into 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.
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texasemily1980
- Posts: 4
- Joined: Tue Jun 26, 2012 7:23 am
- Location: Missouri
Thanks!
Thanks for the message! I have been diligent about the gluten stuff as I have been officially diagnosed as celiac earlier this year. Obviously the cross-contanimation issue is huge... and hopefully my lack of consistent health isn't due to that.
I will definitely take your advice and stay off of all dairy for a few weeks to see what happens. I don't currently consume soy so the dairy (and then eggs) will be the next thing I work through. I will keep you posted!
On a side note, would it be useful to get off of my probiotic for a bit to see if that helps at all? Currently I'm taking the probiotic and a digestive enzyme.
I will definitely take your advice and stay off of all dairy for a few weeks to see what happens. I don't currently consume soy so the dairy (and then eggs) will be the next thing I work through. I will keep you posted!
On a side note, would it be useful to get off of my probiotic for a bit to see if that helps at all? Currently I'm taking the probiotic and a digestive enzyme.
Emily wrote:On a side note, would it be useful to get off of my probiotic for a bit to see if that helps at all? Currently I'm taking the probiotic and a digestive enzyme.
It might be worth a try, because some of us can tolerate probiotics and/or digestive enzymes and some can't. If that's the problem, you should see a difference within a couple of days or so after discontinuing it.Have you checked all your supplements to make sure that they don't contain soy or dairy? I'll assume that you've already checked them for gluten.
Please be aware that for some women, contraceptives and/or HRT can trigger an MC reaction, even when administered by means of a transdermal patch.
I see that you have peanuts listed among your intolerances. Of course a soy sensitivity usually also implies a sensitivity to most or all legumes, but a known sensitivity to peanuts would increase the odds that you're also sensitive to most or all legumes. (For all I know, you may already be avoiding them.)
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 and Welcome Emily!
I also have Celiac disease as well as LC. I applaud you for going grain free and starch free. I'm not able to do that just yet. I do well with rice and meat. Like others have mentioned, I would definitely go dairy free. I did notice some improvement with the D after that....now I'm looking at soy and eggs. I also did 3 months of Pepto but have only been off it for a day. Since you've been reading around the forum, you probably know that fiber can irritate our guts. I could probably do a more Paleo diet if I could just eat more veggies or even a salad ( salad seems to be a big no no till our guts have healed).
As for the SCD yogurt, I had read where lots of people had issues with it due to the Casein in the goat cheese. SCD then recommends taking Acidophilus. I hesitate to take a probiotic right now until I'm more healed. I took them for the last 3 years and they apparently weren't helping me at all.
I had chronic D from April until September until I got on the Pepto (then all norms) so, I've been dealing with this for 8 months now as well.
I'm curious....do you have your Celiac blood results and do you mind sharing them with me? My IgA has gone down to normal but my IgG was at 12....normal is around 4.9.
Best of luck to you! Be patient.
Terri
I also have Celiac disease as well as LC. I applaud you for going grain free and starch free. I'm not able to do that just yet. I do well with rice and meat. Like others have mentioned, I would definitely go dairy free. I did notice some improvement with the D after that....now I'm looking at soy and eggs. I also did 3 months of Pepto but have only been off it for a day. Since you've been reading around the forum, you probably know that fiber can irritate our guts. I could probably do a more Paleo diet if I could just eat more veggies or even a salad ( salad seems to be a big no no till our guts have healed).
As for the SCD yogurt, I had read where lots of people had issues with it due to the Casein in the goat cheese. SCD then recommends taking Acidophilus. I hesitate to take a probiotic right now until I'm more healed. I took them for the last 3 years and they apparently weren't helping me at all.
I had chronic D from April until September until I got on the Pepto (then all norms) so, I've been dealing with this for 8 months now as well.
I'm curious....do you have your Celiac blood results and do you mind sharing them with me? My IgA has gone down to normal but my IgG was at 12....normal is around 4.9.
Best of luck to you! Be patient.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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texasemily1980
- Posts: 4
- Joined: Tue Jun 26, 2012 7:23 am
- Location: Missouri
Thanks for the comments!
I am currently avoiding soy but will definitely re-check my supplements. I’m not taking many now – really just the probiotic and a digestive enzyme. Besides that, I will need to do some research into my birth control (NuvaRing) and my Allegra.Have you checked all your supplements to make sure that they don't contain soy or dairy?
I have a strong family history of celiac and was given the ttg iga test when I had my colonoscopy earlier this year. I tested at 47 - and my doctor concluded that between that test result, my positive reaction to a gluten-free diet, and my family history that I "most likely" have celiac. I realize it is an unofficial diagnosis, but it's good enough for me. Not sure if that's any help!I'm curious....do you have your Celiac blood results and do you mind sharing them with me? My IgA has gone down to normal but my IgG was at 12....normal is around 4.9.
Dear Emily,
Welcome! It's a shame that you have so many problems. I hope you can find a lot of strenght here. I know it's hard to live with MC and the restrictions of diet, but when you write here, people are so supportive and then you find the will to go for it again.
Some stories here are incredible, some people have been in remission for years and others are still struggling. I pray for remission for you.
Here's what works for me:
* GF diet
* Dairy free diet
* no eggs
* 1 cup of coffee a day instead of a lot of coffee
* 1 glass of coca-cola a day instead of a lot of coca-cola
* I eat at the same time every day: 7.30 am, 12.30 and 17.30 pm, a regular pattern in eating habits may work beneficial.
* I get up and I go to sleep at the same time every day. Routine is important for me, it seems to work for me.
* I do relaxation exercises (Yoga, ...) --> stress isn't good for us.
* I take colofiber and I notice that I have less D (in my case, I had constipation and heavy D, now it's normal or mild D)
I went from not being able to eat or drink properly (because I was to sick) to feeling relatively well. I still have my pains, but I can go to work. I used to be at home at least one week a month. Thank god for my boss and coworkers for being so understanding and patient. The last few months I've been struggling because of medicine, not because of LC. So, I can say that I am in some sort of remission.
Good luck and keep us posted.
Julie
Welcome! It's a shame that you have so many problems. I hope you can find a lot of strenght here. I know it's hard to live with MC and the restrictions of diet, but when you write here, people are so supportive and then you find the will to go for it again.
Some stories here are incredible, some people have been in remission for years and others are still struggling. I pray for remission for you.
Here's what works for me:
* GF diet
* Dairy free diet
* no eggs
* 1 cup of coffee a day instead of a lot of coffee
* 1 glass of coca-cola a day instead of a lot of coca-cola
* I eat at the same time every day: 7.30 am, 12.30 and 17.30 pm, a regular pattern in eating habits may work beneficial.
* I get up and I go to sleep at the same time every day. Routine is important for me, it seems to work for me.
* I do relaxation exercises (Yoga, ...) --> stress isn't good for us.
* I take colofiber and I notice that I have less D (in my case, I had constipation and heavy D, now it's normal or mild D)
I went from not being able to eat or drink properly (because I was to sick) to feeling relatively well. I still have my pains, but I can go to work. I used to be at home at least one week a month. Thank god for my boss and coworkers for being so understanding and patient. The last few months I've been struggling because of medicine, not because of LC. So, I can say that I am in some sort of remission.
Good luck and keep us posted.
Julie
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!