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Hello, thank you for creating this board and for continuing to provide such great info and support! Any tips how to navigate here would be great! I actually developed symptoms of MC (have LMC) Nov. 2015, but was diagnosed with Hashimoto's prior to going to a GI doctor who diagnosed me with LMC. Losing my mother in early 2014 was very stressful, and the only family I have left is my only child (age 38) who is severely physically and mentally ill. What a time in life to now be dealing with this! How do you all go about making new friends (as an adult, and now with the MC)? I feel I should be further along in my own mental strength than I am!
Took Budesonide for 8 weeks, but my remission didn't start until I was off the B for about a month, and my current regime includes Digestzymes, VSL3 Probiotics with l-Glutamine, Allegra, topical Magnesium (I'm up to 450 mg 2xday), Vit D/K, bovine glandular thyroid (NatureThyroid may have been causing auto-immune response; synthetics made me feel worse), fish or hempseed oil, MethylGuard Plus (I have 2 copies of the MTHFR mutation), Vitanica Iron Extra, etc.
I don't want this LMC to define me! It sure has taken what little confidence I had and crushed it, up til now and finding this board! Seems my life is all about what to eat, taking the meds, doing the routine, going to the doctors, and that's not a life! Each of you is a rock star, in my book, and I thank you for sharing your stories, your journeys, and what you've learned. Thanks for listening to me, and sorry for the wobbly legs. It's like starting all over, re-inventing myself and creating a new life (plus learning how to eat again!), and while I guess I've accepted that LMC will always be a part of it, I don't know how to move past this scary, lonely place. Is this normal? What was it like for you (going from the mental issues like depression, brain fog, apathy, anxiety, isolation, etc. to being confident again, not letting fear hold you back, being social and happy)?
Would love to hear from you! Looking forward to participating more here!
Welcome to our Internet family. We consider ourselves a family because no one truly understands this disease unless they actually have it.
Stress (in my opinion) is a prerequisite to the development of MC, and a very stressful event can cause a relapse of symptoms in many/most cases.
Yes, almost all of us have to deal with the mental games this disease plays with our minds until we are able to control our symptoms and get our life back. The loneliest and most hopeless feeling I have ever experienced in my life was when my GI doc told me that there was nothing more he could do for me and the realization soaked in that I was on my own and I would have to find a way out of that hopeless pit myself, or learn to live that way for the rest of my life.
You may find the thread at the following link to be helpful:
Most of us have to sort of let our social life slide, or at least trim it back a bit until we are much better able to control our symptoms because the added stress of trying to lead a normal social life typically causes more stress (and consumes more energy) than it is worth while our symptoms are active.
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.
Tex is correct. I cut back on so many social engagements which initially was upsetting but after awhile I realized that I could use that extra time to relax and heal. I also changed my diet and although I wasn't happy about it because I had to give up my favorite foods, feeling better felt so good. I no longer crave nor do I miss those foods. The consequences of eating incorrectly doesn't appeal to me, I would rather be well. And like Tex, I discovered that my doctors really didn't understand this disease and I decided that I needed to take control and educate myself. That was my turning point.
The good news for you is that you found this family now rather than later. I was diagnosed in 2009 with MC, in 2012 a new GI doctor told me that I didn't have it and that it was all in my head. For three years I dealt with that until I found a new doctor who confirmed that I do have MC. It was then that I found this group. Here, you will find a lot of good articles and a lot of help. I highly recommend reading Tex's book, I found it very helpful.
I was scared and overwhelmed when first diagnosed but eventually that passed when I decided to take control and be in charge of my body. You will get there. I wasn't feeling overwhelmed when I arrived here; rather, I was excited to find a positive and helpful group. But keep in mind that I arrived here many years after diagnosis. However, I find that I have to read the information a little at a time because otherwise I will become overwhelmed. So, I read, reflect, and make the appropriate changes. Baby steps, our brains can only absorb so much.
Continue to reach out and ask questions. Hope you are feeling better.
Thank you, Tex and Diana, for sharing your wisdom with me. This is the kind of honesty that I need (as do we all), and we can't get that anywhere else, you're so right about that. I have ordered Tex's book, and will continue to read, learn and share with all of you here. This site is where I first learned about the mast cells and taking an antihistamine, which I truly believe has been the most helpful to my symptoms. When I tried talking about this with my GI doctor, he of course poo-pooed (ha!) this.
You both have had such a long history with MC, and your determination to forge through your feelings of fear and being overwhelmed at a time with so little support is truly inspiring! Words cannot express my gratitude for this site, and the interactive forum through which we can support each other. I appreciate that many of these newbie concerns have been raised countless times ... and as more people unfortunately join the ranks, they'll come up again. And I am THRILLED to find and join this group of extremely positive and helpful group!
Baby steps, yes, Diana! I'm with you both that it isn't worth it to trigger my symptoms, either by putting myself in a stressful situation or in eating incorrectly. I, too, can deal with no longer eating my favorite foods ... although I'm still not 100% sure what all my food triggers are. It's trying to envision maintaining this lifestyle "out in the world" that seems so challenging right now.
My GI doctor told me I didn't have Celiac disease; he's done some tests as well as my naturopath who did testing through Meridian Labs. I know there's another lab you all recommend, and getting a stool test specifically for food intolerances. That might be something for me to pursue ... it's a piece of the puzzle I'm not entirely clear about and knowledge is power! Is it true that just because say a gluten intolerance doesn't show up in blood tests, or in testing of specific areas of the digestive system, it could still exist in another part of the GI tract?
Perhaps I'm putting too much pressure on myself to "get back out there", make friends and build a support system as I know isolation is not a healthy thing. With MC, as you well know, so much is about the food. Society, social gatherings, dating, almost every human interaction involves food ... and people can take that so personally to the point where they are offended if you don't eat the food at the function, etc. It's been difficult that way. If I stay in my cocoon at home I can eat properly, continue to work on controlling my symptoms, which hopefully will bring more confidence in the future. Compared to many of you, I guess I haven't had the LMC all that long (or at least, it wasn't causing problems).
At my age (and I know I'm not alone), the losses have added up, and I couldn't agree with you more, Tex, about stress being such a major trigger. All those inflammation cells feel like physical manifestations of stress. Add to that not being able to be confident in one's body, and the doctors' lack of knowledge and ... wowsers!
Interestingly enough, I'd finally been trying to "heal my gut" which I was sure must be "leaky" due to long-term symptoms. I had gone on a Paleo diet, and it was only after doing that that the MC made itself known (though months more for diagnosis). I'm wondering what caused my MC ... took NSAID's per doctor's orders in 2012 for severe back injury; however, I've also read (likely here!) that certain proteins can cause symptoms, and I'd been putting a Paleo Protein Powder into morning smoothies. A complete lifestyle change with eating totally differently plus going off medicines (for blood pressure, statins, etc.) that I'd been on for 10+ years.
I guess it's not so important to know the cause of one getting MC. For some it may be obvious, for others not. The important thing is look forward as positively as possible, keep away from any known triggers, and continue to educate ourselves and others, yes? My thought process on this is that someday, understanding the cause may lead to quicker, more sustainable relief for MC'rs in the future.
I'll read your link now, Tex, and will continue to read and be involved here, with such a group of caring people who DO understand. Even if I had "family and friends" already in my life, I'd consider you "family". You'll never know how much it means to me to be accepted here with such compassion. Thank you!
Holly
welcome to the group.
as you will see from some of the discussions, the mental and emotional aspects of life with MC are just as important as the eating plan and the right supplements.
based on various discussions over the years I have put together some books and resources that members have found useful
the info is in our 'Guidelines for Recovery' http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22350
I'm wondering what caused my MC ... took NSAID's per doctor's orders in 2012 for severe back injury; however, I've also read (likely here!) that certain proteins can cause symptoms
for majority of people it tends to be a combo of inputs;
genetics
lifestyle (eating, environment etc) duration of our life
medications (not just before MC appears but again medications taken during life)
ongoing inflammation depleting key nutrients etc
Excess toxins, and the bodies ability to clear the toxins (metals, biotoxins, etc)
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you, Gabes, for the warm welcome! I'm in for some great reading - thank you for taking the time to make this link for me. Everyone here has been so gracious.
Regarding the gluten question. My endoscopy showed that I did not have Celiac but I was advised that perhaps I may gluten sensitive and to just stay away from it. Years ago, I did the 23 & Me DNA test. A few months ago my friend, who is a DO, said that she has the software that can read the raw data from the 23 & Me test and guess what? Gluten is a problem. It came as no surprise to either of us but now that I have that confirmed, I can move on. My next test will be with Entero Lab, that is going to be a huge help for me.
I understand about the social aspect of food and people taking it personally when you aren't able to partake what is offered. My BF became upset because I couldn't eat the food he made. He's a chef and I guess no one ever refused his cooking, but I just couldn't do it. I explained to him that it wasn't his cooking, it was my body. He got it. He is now reading Tex's book. When I am invited to eat with friends or family I either bring my own food or go without if there isn't anything that I can eat. I explain to the host/hostess the situation, compliment them, and assure them that it's not about them. If they are upset about that, it's their problem. My health comes first and if the situation were reversed, I would accommodate them. I have found, for the most part, my friends and family to be supportive so I'm fortunate in that regard.
Wow, Diana, thanks so much for your post!! You really helped provide me with insights on how to handle social (when I'm ready to try that again!) situations - what to say, how to say it, and how to communicate from the right place!! Thank you so much!!
Yes, I'm with you on the Celiac testing - all mine (including endoscopy, blood work, etc.) showed no gluten sensitivity, and my doctor is insistent that I don't have it. But after reading through this forum what people who actually have and are living with MC say ... I seriously think I must have!
I'm a little confused about the Entero Lab testing. After checking out the website, it appears I can order it myself? (I'll never get any doctor to do it, and even if I did, insurance wouldn't cover it.) The top test seems the most inclusive, and is the most expensive. I've already had extensive blood testing for food allergens ... and I do get it that the stool test is what I need. Will it reveal exactly what foods each individual needs to avoid in order to reduce risk of MC flares?
So glad you are finding answers, which are so empowering!
Holly wrote:Is it true that just because say a gluten intolerance doesn't show up in blood tests, or in testing of specific areas of the digestive system, it could still exist in another part of the GI tract?
The problem with the blood tests is that they have very poor sensitivity. Here's a reference on that from the book. From page 108:
The blood tests used to screen for celiac disease appear to be the primary problem. Research shows that for all practical purposes, they are capable of detecting only fully-developed cases of celiac sprue, and they even miss a large percentage of those. One such study looked at 115 subjects with biopsy-proven celiac disease and found that only 77 % of those who had total villus atrophy showed a positive serum anti-endomysial antibody test result.6 Furthermore, in this particular study, only 71 % of the total number of subjects had total villus atrophy, and for those who had partial villus atrophy, only 33 % showed a positive anti-endomysial antibody test result. As the research report so eloquently pointed out, “Serologic tests, in clinical practice, lack the sensitivity reported in the literature” (Abrams, et al., 2004, p. 547).
The red emphasis is mine. Here is reference 6 from that quote:
6. Abrams, J. A., Diamond, B., Rotterdam, H., & Green, P. H. (2004). Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy. Digestive Diseases and Sciences, 49(4):546–550. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15185855
The problem is that the antibodies are produced in the gut, not in the blood, and not enough of them show up in the blood to be reliably detected there.
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.
For the EnteroLab tests, most members here order the combination of the A1 + the C1 text panels because they cover the 4 most common food sensitivities (the A1 panel) plus 11 other foods that often cause problems for many of us.
Most of us order the tests ourselves because our doctors are too hard-headed to order the tests for us.
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, Tex! You've clarified beautifully for me what I thought I've been reading/understanding from the posts on this forum. This may be a dumb question, but is gluten in all grains? If it isn't, are the other "grains" (such as rice, oats, and others which seem to come up here frequently) covered for possible sensitivities through the C-1 Entero Lab panel? Another dumb question ... I seem to have been tolerating chicken quite well, yet I had a huge reaction (I know I can't count on the blood test for accuracy) to eggs. Can someone be intolerant of eggs without being intolerant of chicken, too?
Again, thank you so much for your time and invaluable insights!
Yes, there is gluten in all grains. It's unfortunate that everyone uses that term to describe the problem because every type of grain has different types of gluten, so using that term causes confusion. Actually, gluten is comprised of numerous proteins, and only certain proteins (known as "prolamins" or "storage proteins") cause the problem. In wheat, "gliadins" and "glutenin" cause most of the reactions. In rye, the prolamin protein that causes food sensitivities is known as "secalin". In barley it's "hordein". The prolamin protein in oats, known as "avenin" also causes most of us to react. The prolamin in corn, "zein", seldom causes problems and the prolamin in rice, "orzenin" rarely causes food sensitivities.
Yes, the EnteroLab A1 test panel includes a test for anti-gliadin antibodies (which catches sensitivities to wheat, rye, and barley), and the C1 panel includes tests for corn, rice, and oats, among other proteins.
Yes it's possible to be sensitive to eggs without being sensitive to chickens. It's the albumen (the egg white) that contains the protein that many of us react to.
You're most welcome,
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! I can see now that I'd really benefit from doing both Entero Lab tests to really fine-tune the foods that are causing my inflammation. Such great help and support here!
Hello, thank you for creating this board and for continuing to provide such great info and support! Any tips how to navigate here would be great! I actually developed symptoms of MC (have LMC) Nov. 2015, but was diagnosed with Hashimoto's prior to going to a GI doctor who diagnosed me with LMC. Losing my mother in early 2014 was very stressful, and the only family I have left is my only child (age 38) who is severely physically and mentally ill. What a time in life to now be dealing with this! How do you all go about making new friends (as an adult, and now with the MC)? I feel I should be further along in my own mental strength than I am! 
