Hi All,
So I have been off gluten 100% since Sunday (this is my 3rd week overall but lots of mistakes on my part!) and the past four days I have had "norman"!! This after the past five months of D, among other symptoms. I am lucky in that I am tolerating dairy. Gluten seems to be my main problem and I feel fantastic off of it.
So stupidly last evening around 5:00, I decided to try some decaf coffee to see if I could tolerate it. By 8:00pm, I could feel my back pain and thought "uh oh". 9:20 brought some norman and loose D. Then again small amount at 9:30.
My question is, during the healing process will my body react to something that irritates (the coffee) the same way that it would to my sensitivity (gluten)? I am trying to figure out if my problems were due to some inadvertent gluten exposure, or to the coffee. The other odd thing that makes me wonder is my hip joints were hurting more yesterday and I needed to take a nap again due to being so tired. So would my symptoms that I had when eating gluten come back even if it was just drinking the coffee? I am keeping a very detailed food journal, and the only thing to near ingesting gluten the last 4 days would have been making muffins for my kiddos from a mix (non-GF). I tried not to breathe while I stirred, but could smell the apple/cinnamon....
I hope I am making sense! All of you have been a GODSEND to me. I have learned way more on this forum than I ever would from my doctor. I am truly appreciative!
Question on Healing Process
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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ChattyMommy
- Little Blue Penguin
- Posts: 25
- Joined: Sun May 05, 2013 6:09 pm
Hi,
When treating this disease by diet changes, most of us don't become symptom-free virtually overnight. Recovery usually occurs in stages that involve occasional setbacks, but with careful attention to diet, over the long-term, we continue to improve. Many/most of us find that after we see significant improvement by removing gluten from our diet, at some future point we will suffer a setback as our immune begins to concentrate on the next food sensitivity in the hierarchy, which is usually either dairy or soy (if they are still in the diet). IOW it's possible that your reaction was due to your coffee creamer.
As long as we are ingesting gluten, the immune system concentrates on it, and (according to my theory) other food sensitivities often get the equivalent of a free pass. After gluten is removed from the diet, and the antibody level has had time to decay, then the immune system will move it's focus to the next highest food sensitivity in the hierarchy.
The reason why I am guessing that dairy (casein) might have been the problem is because people who are sensitive to coffee usually only react with an urgent trip to the bathroom. The symptoms that you described (back pain, and more than one trip to the bathroom) are usually associated with a food sensitivity that triggers antibody production (such as gluten, casein, or soya). If the coffee contained any dairy products, then they contained casein (and most coffee creamers do contain casein, even the ones that are claimed to be dairy-free), and there is a good chance that this is what triggered your reaction, rather than the coffee itself.
Or, it might have been nothing more than a random reaction. Sometimes these can occur during recovery, for no obvious reason, as our body continues to adjust to the slow decay of anti-gliadin (anti-gluten) antibodies. Anti-gliadin antibodies have a half-life of 120 days, so it takes many months for the immune system to return to a normal state of alertness. As long as the antibody level remains high, the immune system remains on high alert, so it is ultra-sensitive.
Otherwise, it sounds as though your recovery is coming along quite well.
Tex
When treating this disease by diet changes, most of us don't become symptom-free virtually overnight. Recovery usually occurs in stages that involve occasional setbacks, but with careful attention to diet, over the long-term, we continue to improve. Many/most of us find that after we see significant improvement by removing gluten from our diet, at some future point we will suffer a setback as our immune begins to concentrate on the next food sensitivity in the hierarchy, which is usually either dairy or soy (if they are still in the diet). IOW it's possible that your reaction was due to your coffee creamer.
As long as we are ingesting gluten, the immune system concentrates on it, and (according to my theory) other food sensitivities often get the equivalent of a free pass. After gluten is removed from the diet, and the antibody level has had time to decay, then the immune system will move it's focus to the next highest food sensitivity in the hierarchy.
The reason why I am guessing that dairy (casein) might have been the problem is because people who are sensitive to coffee usually only react with an urgent trip to the bathroom. The symptoms that you described (back pain, and more than one trip to the bathroom) are usually associated with a food sensitivity that triggers antibody production (such as gluten, casein, or soya). If the coffee contained any dairy products, then they contained casein (and most coffee creamers do contain casein, even the ones that are claimed to be dairy-free), and there is a good chance that this is what triggered your reaction, rather than the coffee itself.
Or, it might have been nothing more than a random reaction. Sometimes these can occur during recovery, for no obvious reason, as our body continues to adjust to the slow decay of anti-gliadin (anti-gluten) antibodies. Anti-gliadin antibodies have a half-life of 120 days, so it takes many months for the immune system to return to a normal state of alertness. As long as the antibody level remains high, the immune system remains on high alert, so it is ultra-sensitive.
Otherwise, it sounds as though your recovery is coming along quite well.
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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ChattyMommy
- Little Blue Penguin
- Posts: 25
- Joined: Sun May 05, 2013 6:09 pm
Thanks Tex! That makes so much sense as I hadn't felt the back pain (as I can only describe as inflamed intestines - and actually described it that way before I had even heard of LC) in a week or so. I have continued to ingest dairy in the last week, and I checked my creamer and it does contain milk and soy. I am so glad I have been keeping my food journal. I will continue to notate dairy & soy and see where that takes me.
One last question, if you don't mind. Are these "secondary" food sensitivities permanent? Does it depend on the person? It seems like some of you have been able to, very later on, add things back in, correct? Through very detailed introductions?
I see that this will not be as easy as I was thinking. I thought I was one of the lucky ones in that my problem was found quickly and I felt so good, so soon. But I guess we do what we have to do to keep our health.
Thanks again.
One last question, if you don't mind. Are these "secondary" food sensitivities permanent? Does it depend on the person? It seems like some of you have been able to, very later on, add things back in, correct? Through very detailed introductions?
I see that this will not be as easy as I was thinking. I thought I was one of the lucky ones in that my problem was found quickly and I felt so good, so soon. But I guess we do what we have to do to keep our health.
Thanks again.
Well, as long as you don't count dairy, soy, or eggs as "secondary", many people have been able to try things and eventually add things back in ( like fruits and beans) later after they have healed. Although some people have been able to later eat products with eggs as an ingredient, but not eat the whole eggs. We are all very different.
i hope you bounce back quickly. keep us the good work!
leah
i hope you bounce back quickly. keep us the good work!
leah
Hi, I met a woman at a g-f support group meeting who was d-x with celiac disease. She worked at a non g-f deli and made sandwiches and other meals. She complained about the symptoms of gluten ingestion even though she was eating a g-f diet. So she decided to find a new job away from handling food. Her symptons went away after she started her new job. John
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ChattyMommy
- Little Blue Penguin
- Posts: 25
- Joined: Sun May 05, 2013 6:09 pm
Very interesting! It is hard with three kids at home (and a husband who doesn't love to clean up after himself.....crumbs on counter etc. . We gluten sensitive folks kind of get the short end of the stick because we are told its gluten sensitivity, and then sent along our way to figure things out on our own. My doctor did talk to me briefly about things like make-up etc, but I got the feeling he was just mentioning it as an after-thought. That is why the information here is so helpful! 
ChattyMommy,
There is one other possibility concerning food sensitivities. Some of us develop a tolerance for certain foods (even though we are sensitive to them). IOW, we are able to eat them without experiencing any clinical symptoms. Unfortunately though, we still produce antibodies to those foods, and research shows that the antibodies are associated with continued accumulation of damage to the lining of the small intestine.
In my case for example, I had to avoid casein while I was recovering, because I reacted to it. After I had been in remission for a few years, I reintroduced dairy products into my diet (in occasional, small amounts at first, and then I increased the portions as time went on). I thought that I was home free, but a little over a year ago, I decided to order an EnteroLab test because I thought that I was having gluten cross-contamination problems with my diet (and EnteroLab verified that it was true), and out of curiosity, I also ordered a casein test. Sure enough, my casein antibody test result was 24, which is a fairly high level. So I've cut all dairy products back out of my diet, even though they weren't causing any apparent clinical symptoms.
Tex
There is one other possibility concerning food sensitivities. Some of us develop a tolerance for certain foods (even though we are sensitive to them). IOW, we are able to eat them without experiencing any clinical symptoms. Unfortunately though, we still produce antibodies to those foods, and research shows that the antibodies are associated with continued accumulation of damage to the lining of the small intestine.
In my case for example, I had to avoid casein while I was recovering, because I reacted to it. After I had been in remission for a few years, I reintroduced dairy products into my diet (in occasional, small amounts at first, and then I increased the portions as time went on). I thought that I was home free, but a little over a year ago, I decided to order an EnteroLab test because I thought that I was having gluten cross-contamination problems with my diet (and EnteroLab verified that it was true), and out of curiosity, I also ordered a casein test. Sure enough, my casein antibody test result was 24, which is a fairly high level. So I've cut all dairy products back out of my diet, even though they weren't causing any apparent clinical symptoms.
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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ChattyMommy
- Little Blue Penguin
- Posts: 25
- Joined: Sun May 05, 2013 6:09 pm
I am a little confused now. Should I be eliminating dairy (casein) and soy, even though I am not 100% sure that it was the cause of my problems? Now, 36 hours after the coffee with creamer, my stools are still somewhat soft, but I feel like they are trying to get back to normal. I have continued to eat dairy, just to see what happens and if I get back to "norman" as I was on Monday through Thursday of this week.
When I eat dairy, I am not noticing my normal MC symptoms, as I do when I eat gluten (cramping, very watery diarrhea and very tired). I am willing to eliminate dairy if it is causing me to not heal. I was thinking that if I was not reacting to dairy the same way I react to gluten, I was okay as far as keeping it in my diet.
So if I do eliminate dairy, I can somewhat expect my stools to be formed? If I don't eliminate dairy right now, how long should I wait for my stools to become "norman" before I say "ok, I must have a problem with dairy also."? In your opinions, do you think I should cut dairy out asap? Or wait a few days to see what happens with my system?
Thanks again for helping me wade through all of this!
When I eat dairy, I am not noticing my normal MC symptoms, as I do when I eat gluten (cramping, very watery diarrhea and very tired). I am willing to eliminate dairy if it is causing me to not heal. I was thinking that if I was not reacting to dairy the same way I react to gluten, I was okay as far as keeping it in my diet.
So if I do eliminate dairy, I can somewhat expect my stools to be formed? If I don't eliminate dairy right now, how long should I wait for my stools to become "norman" before I say "ok, I must have a problem with dairy also."? In your opinions, do you think I should cut dairy out asap? Or wait a few days to see what happens with my system?
Thanks again for helping me wade through all of this!
You are asking questions that no one can answer, because we all have different symptoms and we all respond differently to treatment. Some are able to change their diet and see improvement or even remission within a day or two. Some see remission within a month or two, but for some of us, it takes a year or longer (it took me a year and a half, for example).
There are no infallible rules that apply for everyone, but in general, the more high-risk foods we eliminate from our diet, the faster we will achieve stable remission. You can eliminate only gluten and you will probably see improvement, but if you have other food sensitivities, then any remission will be short-lived before your immune system begins to react to one of the other food sensitivities. After you remove that food from your diet, then you will probably see improvement again, but if you have any remaining food sensitivities, then your symptoms will relapse again, until you remove it from your diet, etc., etc.
It's possible that you are only sensitive to gluten (but the odds are stacked against that for someone who has MC), so some members here prefer to cut to the chase, by doing an exclusion diet, in which they eliminate all of the foods that are most likely to be a problem, and then after they are in remission, they carefully test the foods that they have eliminated, one at a time, to see if they can be safely added back into their diet.
The alternative is to order a stool test kit from EnteroLab, which can determine your food sensitivities with a high degree of accuracy and reliability, in order to avoid all the guesswork. You can see test results for many members here.
Tex
There are no infallible rules that apply for everyone, but in general, the more high-risk foods we eliminate from our diet, the faster we will achieve stable remission. You can eliminate only gluten and you will probably see improvement, but if you have other food sensitivities, then any remission will be short-lived before your immune system begins to react to one of the other food sensitivities. After you remove that food from your diet, then you will probably see improvement again, but if you have any remaining food sensitivities, then your symptoms will relapse again, until you remove it from your diet, etc., etc.
It's possible that you are only sensitive to gluten (but the odds are stacked against that for someone who has MC), so some members here prefer to cut to the chase, by doing an exclusion diet, in which they eliminate all of the foods that are most likely to be a problem, and then after they are in remission, they carefully test the foods that they have eliminated, one at a time, to see if they can be safely added back into their diet.
The alternative is to order a stool test kit from EnteroLab, which can determine your food sensitivities with a high degree of accuracy and reliability, in order to avoid all the guesswork. You can see test results for many members here.
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 CM. I was going to say something similar to Tex ( but he always says it better)
I took out dairy along with gluten to start with. I also took out all the fiber in my diet ( like raw fruits and veggies and beans). And coffee. The reason is because I wanted to heal as quickly as possible. I realized late that I also was reacting to soy. Once i was feeling good enough, I tested things back in. The veggies and salad are back in... as are the beans, unfortunately, fruit is still an issue. We are all different and there is no right way. you have to do what you think will work best for you.
leah
I took out dairy along with gluten to start with. I also took out all the fiber in my diet ( like raw fruits and veggies and beans). And coffee. The reason is because I wanted to heal as quickly as possible. I realized late that I also was reacting to soy. Once i was feeling good enough, I tested things back in. The veggies and salad are back in... as are the beans, unfortunately, fruit is still an issue. We are all different and there is no right way. you have to do what you think will work best for you.
leah
Hi CM,
Regarding the non-GF family. A couple of strategies I use to reduce the risk of cross contamination are:
Insist the the bread/toast are only used on one bench. Wipe benches and dining tables down with damp paper towel - it is amazing all the breadcrumbs you pick up!. Then it can go straight in the bin. I rinse all gluten crumbs off plates so they don't spill everywhere when I am putting them in the dishwasher. Then wipe out the sink. We try to avoid cutting bread at home - so when DH buys a crusty loaf, we get the bakery to slice it through their machine. He also avoids crusty rolls in favour of bread to reduce the crumbs.
For home baked goods, we only do GF ones. There are some good GF muffin recipes/mixes, you just need to practice a bit, and not give up if you have some failures. Wheat flour floats around in the air very easily, so I never use it at home anymore, even if it isn't for me. The thought of that flour landing on the stuff I want to use is just unbearable.
I also got DH hooked on a GF breakfast cereal.
Good luck!
Regarding the non-GF family. A couple of strategies I use to reduce the risk of cross contamination are:
Insist the the bread/toast are only used on one bench. Wipe benches and dining tables down with damp paper towel - it is amazing all the breadcrumbs you pick up!. Then it can go straight in the bin. I rinse all gluten crumbs off plates so they don't spill everywhere when I am putting them in the dishwasher. Then wipe out the sink. We try to avoid cutting bread at home - so when DH buys a crusty loaf, we get the bakery to slice it through their machine. He also avoids crusty rolls in favour of bread to reduce the crumbs.
For home baked goods, we only do GF ones. There are some good GF muffin recipes/mixes, you just need to practice a bit, and not give up if you have some failures. Wheat flour floats around in the air very easily, so I never use it at home anymore, even if it isn't for me. The thought of that flour landing on the stuff I want to use is just unbearable.
I also got DH hooked on a GF breakfast cereal.
Good luck!