I started the d back in 2004. I was not diagnosed with MC until my colonoscopy in 2008. I was immediately told to do the Pepto thing for 6 weeks. That did not work for me. I had d on and off until it became severe in the spring of 2012. My GI put me on Entocort for two weeks. Immediately the d stopped. When I stopped the Entocort, the d came right back. I did the Entocort again last fall - 9 mg for a month, 6 mg for a month and started 3 mg for a month. After three days, the d came back. I stopped the Entocort and tried accupuncture and colonics. Nothing worked. The colonics lady mentioned microscopic colitis which I had never heard anyone refer MC like that. That helped me find Mr. Persky's book on Amazon. What a help. I immediately did the Enterolab tests. I had 33 units of gluten and had no other intolerances. My fat absorption was normal. Since the first of the year, I have done my best to go GF. Reading the forum has helped me to realize the raw vegetables and most fruits were not my friend. Then I realized the oatmeal for breakfast every morning was doing me no favors. I am not cured by any means. I have only gone to the bathroom once today and it was not the explosive d. Praise the Lord!
I am grateful for all of the information on this website. It is so helpful with all of the information posted.
Bless all of you,
Vandolyn
First Timer
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Mars, starfire, Polly, Joefnh
Hi Vandolyn,
Welcome to our internet family. I'm sorry that you had to deal with the symptoms of this disease for so long with only short periods of relief, but I'm happy that you finally found us. And all of us here can understand your happiness with having to make only a single trip to the bathroom today, after dealing with the symptoms for so long. Congratulations!
It sounds as though you have your treatment program well underway, and you are already seeing results. Good for you. It can take much longer than most people expect, for the damage to the intestines to heal, and recovery is not always a smooth journey, but with careful attention to your diet, in a few more months you should be feeling much better. Hopefully, it won't take that long, but recovery times are pretty much unpredictable, and for some of us who reacted for years before finding a solution, recovery usually takes longer than it does for those who begin treatment soon after the symptoms begin.
You probably remember from the book that even though we might not be sensitive to casein (the primary protein in milk), as long as we still have intestinal inflammation, we will be unable to produce adequate amounts of the lactase enzyme, which is necessary for digesting lactose (the primary sugar in milk), so it's best to avoid dairy products until we reach remission.
Again, welcome aboard, and please don't hesitate to ask any questions that come to mind.
And thank you for the kind words,
Tex (Wayne)
Welcome to our internet family. I'm sorry that you had to deal with the symptoms of this disease for so long with only short periods of relief, but I'm happy that you finally found us. And all of us here can understand your happiness with having to make only a single trip to the bathroom today, after dealing with the symptoms for so long. Congratulations!
It sounds as though you have your treatment program well underway, and you are already seeing results. Good for you. It can take much longer than most people expect, for the damage to the intestines to heal, and recovery is not always a smooth journey, but with careful attention to your diet, in a few more months you should be feeling much better. Hopefully, it won't take that long, but recovery times are pretty much unpredictable, and for some of us who reacted for years before finding a solution, recovery usually takes longer than it does for those who begin treatment soon after the symptoms begin.
You probably remember from the book that even though we might not be sensitive to casein (the primary protein in milk), as long as we still have intestinal inflammation, we will be unable to produce adequate amounts of the lactase enzyme, which is necessary for digesting lactose (the primary sugar in milk), so it's best to avoid dairy products until we reach remission.
Again, welcome aboard, and please don't hesitate to ask any questions that come to mind.
And thank you for the kind words,
Tex (Wayne)
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
Tex,
Thank you so much for your response. This has been a difficult journey - you know what is wrong but you do not know what to do about it. I feel your book and Enterlab were the best things that came my way.
I have never missed work with this and do not feel sick except I do feel fatigued when the d is so bad. My weight does not go up and down. It is just crazy at how my body reacts.
I do remember from your book that casein can cause issues. Ice cream is my favorite and have not given it up as yet. I did give up my 10 diet cokes per day at the end of January. That is still hard for me. I have been drinking goat milk and did get some almond milk today to try. I may have to give up the ice cream also before it is completely healed.
As for the question about the colonics - it did not stop the d. But I really liked the feeling after the treatments. I have had two. Your system feels better. I don't think it will hurt but do not expect miracles from it. Be sure to find someone who has "enclosed" equipment. I understand it is more sanitary and just a lot better treatment.
I have much to be thankful. I am not dying of cancer or any other horrible disease. I am a CPA and can go to my office everyday and work. I have a very understanding and helpful husband. It could be a lot worse.
Blessings to all,
Vandolyn
Thank you so much for your response. This has been a difficult journey - you know what is wrong but you do not know what to do about it. I feel your book and Enterlab were the best things that came my way.
I have never missed work with this and do not feel sick except I do feel fatigued when the d is so bad. My weight does not go up and down. It is just crazy at how my body reacts.
I do remember from your book that casein can cause issues. Ice cream is my favorite and have not given it up as yet. I did give up my 10 diet cokes per day at the end of January. That is still hard for me. I have been drinking goat milk and did get some almond milk today to try. I may have to give up the ice cream also before it is completely healed.
As for the question about the colonics - it did not stop the d. But I really liked the feeling after the treatments. I have had two. Your system feels better. I don't think it will hurt but do not expect miracles from it. Be sure to find someone who has "enclosed" equipment. I understand it is more sanitary and just a lot better treatment.
I have much to be thankful. I am not dying of cancer or any other horrible disease. I am a CPA and can go to my office everyday and work. I have a very understanding and helpful husband. It could be a lot worse.
Blessings to all,
Vandolyn
With this disease, having an understanding spouse can be a huge benefit, because to many people, we do not appear to be sick, so they have trouble believing that this is a serious disease that is life-altering at the very least, and debilitating in the more severe cases.
Prior to my symptoms, I had been drinking about half a dozen or so regular cokes per day, so during my recovery, I replaced them with an occasional glass of unsweetened tea. Interestingly, after about a year and a half on a strict diet, when I tried to reintroduced cokes into my diet, I found that I could tolerate them, but I no longer craved them, because they tasted too sweet after also limiting sugar for so long. So MC cost coke a long-time customer. LOL.
One thing to remember is that anyone who has enteritis (intestinal inflammation) for more than a day or so, loses most of their ability to produce lactase enzyme in their small intestine, and lactase is necessary to split lactose, the primary sugar in milk. The undigested lactose is usually fermented by bacteria in the colon, resulting in gas, bloating, and cramps. After our MC is under control, and the inflammation subsides, our ability to produce lactase enzyme will resume to whatever level it was before the inflammation occurred (some people are lactase deficient prior to the onset of MC, however).
IOW, lactose-intolerance is a transient issue, but for those of us who are casein-sensitive, the condition is usually permanent. There's a chance that you may not be casein-sensitive. The best recovery policy, of course (unless we order the EnteroLab casein test, and receive a positive result), is to avoid all dairy products during recovery, and then try to reintroduce them after we have been in remission for a while.
Yes I agree, MC is bad enough, but it can always be worse, so we are fortunate, from that viewpoint.
Tex
Prior to my symptoms, I had been drinking about half a dozen or so regular cokes per day, so during my recovery, I replaced them with an occasional glass of unsweetened tea. Interestingly, after about a year and a half on a strict diet, when I tried to reintroduced cokes into my diet, I found that I could tolerate them, but I no longer craved them, because they tasted too sweet after also limiting sugar for so long. So MC cost coke a long-time customer. LOL.
One thing to remember is that anyone who has enteritis (intestinal inflammation) for more than a day or so, loses most of their ability to produce lactase enzyme in their small intestine, and lactase is necessary to split lactose, the primary sugar in milk. The undigested lactose is usually fermented by bacteria in the colon, resulting in gas, bloating, and cramps. After our MC is under control, and the inflammation subsides, our ability to produce lactase enzyme will resume to whatever level it was before the inflammation occurred (some people are lactase deficient prior to the onset of MC, however).
IOW, lactose-intolerance is a transient issue, but for those of us who are casein-sensitive, the condition is usually permanent. There's a chance that you may not be casein-sensitive. The best recovery policy, of course (unless we order the EnteroLab casein test, and receive a positive result), is to avoid all dairy products during recovery, and then try to reintroduce them after we have been in remission for a while.
Yes I agree, MC is bad enough, but it can always be worse, so we are fortunate, from that viewpoint.
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.
Welcome Vandolyn. So sorry it took so long for you to find us and get the information you needed to start your healing.
It looks like you have things in hand and have a great attitude about all of this. I agree with how having an understanding husband can help tremendously. When I cook dinner, mine eats whatever I give him... and we have changed our dinners a lot since all of this has started!
After 6 months, I was able to add back salad, beans, tomato, dark chocolate, and raw veggies ( not so much fruit- fructose). Now it's a little over a year and my diet keeps expanding as I believe I am still healing. I will always , however remain gluten free. I have not gone back to dairy either, but I have noticed that if I am "buttered" by accident or a little "soyed", I am actually OK. Things keep improving, so I am hear to tell you that it does get better :)
Take Care and please keep us posted
Leah
It looks like you have things in hand and have a great attitude about all of this. I agree with how having an understanding husband can help tremendously. When I cook dinner, mine eats whatever I give him... and we have changed our dinners a lot since all of this has started!
After 6 months, I was able to add back salad, beans, tomato, dark chocolate, and raw veggies ( not so much fruit- fructose). Now it's a little over a year and my diet keeps expanding as I believe I am still healing. I will always , however remain gluten free. I have not gone back to dairy either, but I have noticed that if I am "buttered" by accident or a little "soyed", I am actually OK. Things keep improving, so I am hear to tell you that it does get better :)
Take Care and please keep us posted
Leah
Tex,
I did have the casein test at Enterolab. I tested 8 units. It certainly could be I have a problem or could have in the future. I will watch carefully. When I did the test, I did the A + C panels and the D. I also tested for parasites as I was told sometimes that can be a problem if you travel overseas. My only issues were 33 units of Anti-gliadin IgA and my pancreatic elastase stool test was 197 and should be greater than 200.
Today so far has been a perfect day - I was normal for the test time in many months. I hope after healing for a few months, I can also introduce the fresh vegetables and fruit back into my diet. I miss them. The canned are just not as good.
Interesting about your coke experience. I am going to do my best to leave them alone. I know the aspartame is terrible for you drinking as many as I did.
Appreciate all you very much.
Vandolyn
I did have the casein test at Enterolab. I tested 8 units. It certainly could be I have a problem or could have in the future. I will watch carefully. When I did the test, I did the A + C panels and the D. I also tested for parasites as I was told sometimes that can be a problem if you travel overseas. My only issues were 33 units of Anti-gliadin IgA and my pancreatic elastase stool test was 197 and should be greater than 200.
Today so far has been a perfect day - I was normal for the test time in many months. I hope after healing for a few months, I can also introduce the fresh vegetables and fruit back into my diet. I miss them. The canned are just not as good.
Interesting about your coke experience. I am going to do my best to leave them alone. I know the aspartame is terrible for you drinking as many as I did.
Appreciate all you very much.
Vandolyn
It seems that it's rather common for many people who have MC to experience sub-par performance from their pancreas, until their digestive system organs have had sufficient time to heal. Based on our accumulated experience among the members of this board, our pancreas apparently suffers the same type of inflammation as our intestines (and most other digestive system organs), and when we manage to get the rest of our GI system back to normal, the pancreas usually returns to normal, also.Vandolyn wrote:My only issues were 33 units of Anti-gliadin IgA and my pancreatic elastase stool test was 197 and should be greater than 200.
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.
Does this put us at risk for Type 1 Diabetes? Those of us with the HLADQ2 gene? I've been wondering how to decrease my chances (and my kids) of ever developing it.It seems that it's rather common for many people who have MC to experience sub-par performance from their pancreas
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Well, it would seem that it might, if the MC remained untreated. The effect is almost surely associated with untreated gluten sensitivity, so as long as we carefully avoid gluten, that should minimize the risks (IMO).Zizzle wrote:Does this put us at risk for Type 1 Diabetes?
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.