Hello,
I am new to this site and firstly would like to thank you all for all of your insight and dedication to helping others with this disease. I have had not much information or direction until I discovered this forum and it was very much needed.
Just some background on me:
39-years old. 5'9," 109 lbs (my normal weight was 125 prior to MC). Diagnosed with Lymphocytic Colitis 5 months ago. My thoughts on what triggered it: Either the most horrible upper viral infection I've ever had 2 months prior (possibly adenovirus) or taking Augmentin for four days for accompanying sinus infection. This is what I believe most to be the culprit, as I had diarrhea while on it (as many do with antibiotics) but I wasn't taking any probiotics and continuing to eat sugar/carbs during, which may have made the gut bacterial imbalance even more out of whack. The diarrhea and symptoms continued off an on for a month after that until ultimately, full-blown LC.
Note: I exercised and ate pretty healthy prior to LC, however, often ate desert almost every night after dinner and have done this for years. Also have had a low lymphocyte count for several years prior to this so wondering if either of these have contributed.
My treatment so far:
- Budesonide for four days (bad sides effects with horrible headache, nausea and dizziness so the GI NP took me off)
- Pepto-Bismol three times a day for three months (has helped some but no remission)
- Questran (currently on for six days - seems to be helping the D a little but still early. Still having gurgling and lower abdomen cramping)
Calprotectin Stool (inflammation) level: 207
LC symptoms from beginning: WD usually only once a day but have been 4-6 times on a few bad days
My Enterolab results:
(Normal range is less than 10 units)
Anti-gliadin IgA: 21
Anti-casein: 12
Anti-ovalbum: 12
Anti-soy: 21
Antigenic foods: 13 (Oat, rice, corn with some reaction, Almond with moderate reaction)
I have not started a gluten-free diet until about a week ago (only recently discovered this site) so it is a bit early to tell if it is helping or not. I know my gluten and soy levels are the highest (21) so I plan to eliminate these foods. The others were only mildly elevated so I am not sure if I need to eliminate those as well or not?
My question is, do I need to stay on a gluten-free diet forever, even after my gut has finally healed (1-2 years)? I am a bit depressed about having to possibly give up gluten for the rest of my life (and maybe soy as well) and am wondering, if my case of LC is mild enough, will that be necessary if my colon is able to tolerate it fine in the future or will it always cause further damage/relapse every time I eat it?
Also, is it possible that we are only more sensitive to these foods simply because our colons are inflamed and they might return to a normal level after some healing has begun? If I were to retest the Enterolab in a couple of years, might these values change?
Thank you all again for your help and support!
Gluten-Free Forever?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Sorry
I am from Mexico and was under isotretinoin when diagnosed with LC. I donkot have Diarrea actually some daus my stools are pregty good, but I am unable to gain wight. I have eliminated gluten and dairy but not sure abiut the corn. Do not know what to do either, I have heard that once you are sensitive to Gluten it is for the rest of your life 
Ingrid
Hi,
Ingrid is correct. Once a food sensitivity is triggered, it becomes permanent very, very quickly. Here's why:
Something (PPIs, NSAIDs, antibiotics, pathogens, parasites, food sensitivities, etc.) cases a chronic inflammation condition in the intestines. In your case it was probably the Augmentin. This eventually leads to increased intestinal permeability (leaky gut). This allows peptides of medium length chains of amino acids from partially-digested food to enter the blood stream. That provokes a response from the immune system (because they shouldn't be there, so they are perceived as foreign invaders). This provokes a chronic inflammation cycle that leads to the development of MC.
There are two types of immune system response, innate response, and adaptive response. We are born with certain innate immune system response abilities. Our body learns adaptive immunity in response to exposure to foreign substances that are perceived as threats. It's why vaccines work. And it's why these food sensitivities are almost always permanent. With the exception of one sugar (known as alpha-gal, which causes a condition known as mammalian meat allergy), all allergies are caused by proteins. So our adaptive immune system very quickly develops an allergy to those proteins that leak into our bloodstream.
For MC patients, those foods are (in the normal order of probability that they will be a problem), gluten, casein, soy, and chicken egg, and all derivatives thereof. Therefore an exclusion diet that can be followed to recover from MC would totally exclude all traces of those particular foods. There can be additional food sensitivities, and not everyone is sensitive to all those foods, but in a nutshell, that's what causes MC, and that's what causes the ensuing development of food allergies.
Avoiding the foods that provoke an immune system response will allow the inflammation to fade away, and the symptoms will resolve. In essence, controlling the disease is very simple. Out in the real world though, identifying the problematic foods and totally avoiding them tends to be very difficult. It's doable, but it takes dedication and perseverance.
As to your question about casein and chicken eggs, yes, they should be totally avoided for now, as you are trying to recover. It's possible that somewhere down the road (years from now), you might be able to tolerate eggs again, especially in baked goods, but there's no guarantee that you will eventually be able to tolerate them.
I hope this helps.
Tex
Ingrid is correct. Once a food sensitivity is triggered, it becomes permanent very, very quickly. Here's why:
Something (PPIs, NSAIDs, antibiotics, pathogens, parasites, food sensitivities, etc.) cases a chronic inflammation condition in the intestines. In your case it was probably the Augmentin. This eventually leads to increased intestinal permeability (leaky gut). This allows peptides of medium length chains of amino acids from partially-digested food to enter the blood stream. That provokes a response from the immune system (because they shouldn't be there, so they are perceived as foreign invaders). This provokes a chronic inflammation cycle that leads to the development of MC.
There are two types of immune system response, innate response, and adaptive response. We are born with certain innate immune system response abilities. Our body learns adaptive immunity in response to exposure to foreign substances that are perceived as threats. It's why vaccines work. And it's why these food sensitivities are almost always permanent. With the exception of one sugar (known as alpha-gal, which causes a condition known as mammalian meat allergy), all allergies are caused by proteins. So our adaptive immune system very quickly develops an allergy to those proteins that leak into our bloodstream.
For MC patients, those foods are (in the normal order of probability that they will be a problem), gluten, casein, soy, and chicken egg, and all derivatives thereof. Therefore an exclusion diet that can be followed to recover from MC would totally exclude all traces of those particular foods. There can be additional food sensitivities, and not everyone is sensitive to all those foods, but in a nutshell, that's what causes MC, and that's what causes the ensuing development of food allergies.
Avoiding the foods that provoke an immune system response will allow the inflammation to fade away, and the symptoms will resolve. In essence, controlling the disease is very simple. Out in the real world though, identifying the problematic foods and totally avoiding them tends to be very difficult. It's doable, but it takes dedication and perseverance.
As to your question about casein and chicken eggs, yes, they should be totally avoided for now, as you are trying to recover. It's possible that somewhere down the road (years from now), you might be able to tolerate eggs again, especially in baked goods, but there's no guarantee that you will eventually be able to tolerate them.
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.
Hi Ingrid,
If you feel that corn is a problem, here's how to test it:
Avoid all corn for five or six days, and then reintroduce it into your diet. Take careful note of how it makes you feel a few hours to a half-day or so after you eat it. Does it cause any symptoms, such as: Tachicardia (fast heart rate)? Facial flush (sudden redness or rash on face or chest)? Runny nose, itchy eyes, or throat congestion? Any abdominal discomfort? Headache? Any aches or pains? Lower back pains or upper shoulder pains? Any change in normal bowel pattern?
I hope this helps.
Tex
If you feel that corn is a problem, here's how to test it:
Avoid all corn for five or six days, and then reintroduce it into your diet. Take careful note of how it makes you feel a few hours to a half-day or so after you eat it. Does it cause any symptoms, such as: Tachicardia (fast heart rate)? Facial flush (sudden redness or rash on face or chest)? Runny nose, itchy eyes, or throat congestion? Any abdominal discomfort? Headache? Any aches or pains? Lower back pains or upper shoulder pains? Any change in normal bowel pattern?
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.
Hi Ingrid,
Unless you have a fructose intolerance problem that is not due to MC, you should be able to slowly add fruit back into your diet after you reach remission and your digestive system does some healing. As young as you are, you should be able to heal faster than most of the rest of us, but complete healing might still take one to two years. You should be able to begin eating fruit again a month or so after you reach remission.
I'm glad you found that magnesium deficiency, because after a while it usually causes more and more health problems. Every known disease is associated with magnesium deficiency.
Tex
Unless you have a fructose intolerance problem that is not due to MC, you should be able to slowly add fruit back into your diet after you reach remission and your digestive system does some healing. As young as you are, you should be able to heal faster than most of the rest of us, but complete healing might still take one to two years. You should be able to begin eating fruit again a month or so after you reach remission.
I'm glad you found that magnesium deficiency, because after a while it usually causes more and more health problems. Every known disease is associated with magnesium deficiency.
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.
Thank you so much, Tex, for that wonderful explanation!
I have tried to find posts on here where people have been on, for example, a gluten and soy-free diet for two years and have tried to slowly go back on these foods and what the outcome was, but was unable to find any. Have you seen anyone with success for being able to go back on their initial food sensitivities, even gluten, with no problem?
I have tried to find posts on here where people have been on, for example, a gluten and soy-free diet for two years and have tried to slowly go back on these foods and what the outcome was, but was unable to find any. Have you seen anyone with success for being able to go back on their initial food sensitivities, even gluten, with no problem?
About one or two in a thousand members here claim that they can tolerate gluten (or some other food intolerance) after a while. But except for yeast and eggs, those claims appear to be a misrepresentation. They aren't intentional misrepresentations; those individuals just don't understand what has happened. It's possible to force (induce) your immune system to tolerate certain foods by eating a small amount each day, and slowly increasing the dose. That's called induced tolerance, and immunologists use it every day to train people's immune systems to tolerate certain foods that ordinarily cause them to react, including anaphylactic reactions.
But unfortunately, published research shows that if you test the lining of the small intestine of those individuals, It's still highly inflamed — their immune system is just ignoring the inflammation, so that they don't react. And as long as the intestines are inflamed, the heightened risk of developing additional autoimmune diseases, cancer, or whatever, continues.
I've even been able to do this myself. After I reached remission and healed for a year or so, I began to slowly add casein products (cheese and later ice cream) to my diet. Eventually, I could tolerate relatively large amounts of them with no digestive issues. But I noticed that I began to have osteoarthritis problems after a few months. The fingers of my right hand began to develop large, swollen joints, and they began to grow crooked and twisted. I ordered a casein test and found that my antibody level against casein was quite high. I immediately cut casein back out of my diet, and the symptoms faded away. The damage to my fingers wasn't reversed, but the osteoarthiritis stopped creating new damage.
Tex
But unfortunately, published research shows that if you test the lining of the small intestine of those individuals, It's still highly inflamed — their immune system is just ignoring the inflammation, so that they don't react. And as long as the intestines are inflamed, the heightened risk of developing additional autoimmune diseases, cancer, or whatever, continues.
I've even been able to do this myself. After I reached remission and healed for a year or so, I began to slowly add casein products (cheese and later ice cream) to my diet. Eventually, I could tolerate relatively large amounts of them with no digestive issues. But I noticed that I began to have osteoarthritis problems after a few months. The fingers of my right hand began to develop large, swollen joints, and they began to grow crooked and twisted. I ordered a casein test and found that my antibody level against casein was quite high. I immediately cut casein back out of my diet, and the symptoms faded away. The damage to my fingers wasn't reversed, but the osteoarthiritis stopped creating new damage.
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 Sorphal,
We've had two folks on the forum that I know of who could eat gluten for awhile but then relapsed. Sara who posted very early on (do a search by Sara to read her posts) probably had undiagnosed MC as a young woman. It went away
for about 10-15 years and she ate whatever. Then she relapsed and was diagnosed with MC. She went into remission through diet alone but it took along while. She is never eating gluten again. Her threads/posts are worth reading. She writes like a professional writer.
We had another young woman who I forget her name. She went into remission and decided to test eating gluten.
She tested cheerios back when they contained gluten. She ate one cheerio a day. Then 2 cheerios. Then 3 cheerios
etc until she was eating wheat bagels. She ate gluten for about 6 months and then had a serious relapse.
I believe she was pregnant at the time and then had an infant. She had a very very difficult time getting back
into remission. Her posts were agonizing to read.
My theory is gluten is like a tipping point. After getting into remission we can maybe tolerate a bit here and there
but at some point inflammation builds to a tipping point and we reflare.
This is a disease that you don't want to go backwards with. I had a reflare that it took me 9 months to pull out of.
I wasn't eating gluten. My reflare was caused by stress.
We've had two folks on the forum that I know of who could eat gluten for awhile but then relapsed. Sara who posted very early on (do a search by Sara to read her posts) probably had undiagnosed MC as a young woman. It went away
for about 10-15 years and she ate whatever. Then she relapsed and was diagnosed with MC. She went into remission through diet alone but it took along while. She is never eating gluten again. Her threads/posts are worth reading. She writes like a professional writer.
We had another young woman who I forget her name. She went into remission and decided to test eating gluten.
She tested cheerios back when they contained gluten. She ate one cheerio a day. Then 2 cheerios. Then 3 cheerios
etc until she was eating wheat bagels. She ate gluten for about 6 months and then had a serious relapse.
I believe she was pregnant at the time and then had an infant. She had a very very difficult time getting back
into remission. Her posts were agonizing to read.
My theory is gluten is like a tipping point. After getting into remission we can maybe tolerate a bit here and there
but at some point inflammation builds to a tipping point and we reflare.
This is a disease that you don't want to go backwards with. I had a reflare that it took me 9 months to pull out of.
I wasn't eating gluten. My reflare was caused by stress.