Visit the Microscopic Colitis Foundation Website
Hi there! Thought I would say hello. I was just diagnosed with MC (they did biopsies during a colonoscopy).
I've been gluten-free for about 3 years now, and eat very little dairy (just sheep and goat products). I don't eat cashews (bad news!) or take ibuprofen or aspirin (tylenol only, and rarely). Beef is bad as is fried foods. Stomach issues got better, but never completely better.
My dr. wants me to come to the office to discuss the results, which of course I will do, but I don't feel bad enough and really don't want to go on medication.
I'd be willing to make a few more dietary changes. Looks like chocolate might be out? (yikes! I really love chocolate). Not sure what else to cut out or how I figure it out. When I took a test a few years ago, I was intolerant to everything they tested me for, but maybe that's how MC works?
Anyway, glad have found this site - it's nice to know people who understand!
Hello! Just diagnosed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome Buendia!
If your symptoms are mild, you may be able to control them with PeptoBismol tabs and Immodium as needed, then focus on anti-inflammatory supplements and finding any additional intolerances. Based on people's experience here, your primary suspect now should be soy. I'm assuming you have celiac. Have you done Cyrex lab's celiac cross-reactivity testing? It showed I was highly reactive to sesame seeds, and only borderline on chocolate (thank God). I started with Enterolab testing first, which identified the gluten, casein and soy sensitivities. I declined Asacol from my GI 2 years ago and I'm glad I did.
If your symptoms are mild, you may be able to control them with PeptoBismol tabs and Immodium as needed, then focus on anti-inflammatory supplements and finding any additional intolerances. Based on people's experience here, your primary suspect now should be soy. I'm assuming you have celiac. Have you done Cyrex lab's celiac cross-reactivity testing? It showed I was highly reactive to sesame seeds, and only borderline on chocolate (thank God). I started with Enterolab testing first, which identified the gluten, casein and soy sensitivities. I declined Asacol from my GI 2 years ago and I'm glad I did.
GRB,
Good article! I had no idea the Cyrex test was so new (2011). My doctor must be very informed. Can't believe insurance covered it! I might suggest adding this to the Enterolab & MRT recommended tests for MCers.
I assumed Buendia had celiac disease since she's been GF for 3 years (prior to MC diagnosis). MC is very common among celiacs who don't seem to be getting better. Some docs, including the famous Dr. Fasano in MD, believe MC is simply a form a celiac of the large instestine. Both celiac and MC are the result of leaky gut/intestinal permeability.
I forgot to mention I also scored off the charts for intolerance to Polish Wheat, a wheat variety no longer grown in the US. I'm not a confirmed celiac, but I wonder if these results are further evidence that I probaly have it (in addition to HLA DQ2 genes).
Good article! I had no idea the Cyrex test was so new (2011). My doctor must be very informed. Can't believe insurance covered it! I might suggest adding this to the Enterolab & MRT recommended tests for MCers.
I assumed Buendia had celiac disease since she's been GF for 3 years (prior to MC diagnosis). MC is very common among celiacs who don't seem to be getting better. Some docs, including the famous Dr. Fasano in MD, believe MC is simply a form a celiac of the large instestine. Both celiac and MC are the result of leaky gut/intestinal permeability.
I forgot to mention I also scored off the charts for intolerance to Polish Wheat, a wheat variety no longer grown in the US. I'm not a confirmed celiac, but I wonder if these results are further evidence that I probaly have it (in addition to HLA DQ2 genes).
BTW, the edit key is on the top right corner of your posts.Polish wheat, Triticum polonicum L.
Polish wheat varieties are spring wheats with tall stems. Spikes are large, open or dense, awned, and square or rectangular in cross-section. Kernels are very long, narrow, and hard. They thresh free of the glumes. While grown extensively in Mediterranean countries, Polish wheat has proved inferior in the United States both in yield and in quality for bread or macaroni products. For these reasons it has substantially disappeared from commercial production.
Hi! Yes, symptoms mild now (although they were really bad before I stopped eating gluten 3 years ago - terrible pain! couldn't reach the bathroom fast enough).Zizzle wrote:Welcome Buendia!
If your symptoms are mild, you may be able to control them with PeptoBismol tabs and Immodium as needed, then focus on anti-inflammatory supplements and finding any additional intolerances. Based on people's experience here, your primary suspect now should be soy. I'm assuming you have celiac. Have you done Cyrex lab's celiac cross-reactivity testing? It showed I was highly reactive to sesame seeds, and only borderline on chocolate (thank God). I started with Enterolab testing first, which identified the gluten, casein and soy sensitivities. I declined Asacol from my GI 2 years ago and I'm glad I did.
Soy... hmmm... not sure I eat much of that (I rarely if ever eat processed food).
I don't have celiac (tested neg with blood test) but tested positive for gluten and casein intolerance on the Enterolab test. I did gluten and casein only.
Going to look into the cross-reactivity test!
I like the idea of just trying the pepto and immodium first - esp. for the flareups I get (although I feel like they're related to some food I'm eating...)
Thank you for the warm welcome from everyone! Looking forward to learning much more on this site!!
Forgot to mention that I also have the celiac genes - HLA-DQ 2,3 (Subtype 2,8)
... and it seems my grandfather (who lived to be 93!) never ate wheat - he wouldn't even join in on pizza night, my dad said. Ate only rice and potatoes. So we both suspect he was celiac or at least had problems.
Our family meals are all gf - hopefully with the low exposure to gluten my daughter won't develop problems (she has at least one celiac gene since I have two).
... and it seems my grandfather (who lived to be 93!) never ate wheat - he wouldn't even join in on pizza night, my dad said. Ate only rice and potatoes. So we both suspect he was celiac or at least had problems.
Our family meals are all gf - hopefully with the low exposure to gluten my daughter won't develop problems (she has at least one celiac gene since I have two).
Other things to consider in addition to figuring out your other food intolerances:
Make sure your vitamin D3 levels are optimal (at least 40).
Consider anti-inflammatory supplements like fish oil, curcumin.
Consider a probiotic that agrees with you (i.e. Culturelle, Florastor)
Make sure you get enough calcium and magnesium.
Consider supplements to help heal the permeable intestines - some use L-Glutamine powder.
Consider whether you might have mast cell involvement.
Make sure your vitamin D3 levels are optimal (at least 40).
Consider anti-inflammatory supplements like fish oil, curcumin.
Consider a probiotic that agrees with you (i.e. Culturelle, Florastor)
Make sure you get enough calcium and magnesium.
Consider supplements to help heal the permeable intestines - some use L-Glutamine powder.
Consider whether you might have mast cell involvement.
We must be long-lost sisters! I'm HLA DQ 2,3 (Subtype 2, 9). I just sent my son's cheek swab to Enterolab, since both my kids have soft stool issues, but nothing major. They are also on "low gluten" diets - school lunch and snacks, but mostly GF at home. My maternal grandmother said she couldn't eat bread or pasta because they made her feel sick, but she ate them anyway... 
Buendia,
Welcome to our internet family. I hope that you'll be able to find the information you need, here, to fine-tune your diet so that you won't need any medications to control your symptoms.
Tex
Welcome to our internet family. I hope that you'll be able to find the information you need, here, to fine-tune your diet so that you won't need any medications to control your 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.
Sure, there's an edit key. It's in the upper right hand corner of your post.Gay wrote:ooops...there isn't an edit key?
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.
This is awesome! Thank you! I was taking Culturelle but didn't do much for me... Any vitamins mess with my digestive system, so I was pretty afraid of those... not sure what mast cell involvement is - but it sounds scary! I have a lot to talk to my dr. about!Zizzle wrote:Other things to consider in addition to figuring out your other food intolerances:
Make sure your vitamin D3 levels are optimal (at least 40).
Consider anti-inflammatory supplements like fish oil, curcumin.
Consider a probiotic that agrees with you (i.e. Culturelle, Florastor)
Make sure you get enough calcium and magnesium.
Consider supplements to help heal the permeable intestines - some use L-Glutamine powder.
Consider whether you might have mast cell involvement.
Zizzle - we have another sister, too! - she's my wonderful friend who lives in the same city and has a young daughter. She has the double gene, same diet (we spent Christmas with their family which was great - didn't need to even think about who was bringing what and we could eat it all!! and we go on little vacations with them). She has had a ton of autoimmune issues which I'm hoping to avoid (hepatitis, Hashimoto's) but didn't have stomach issues and colonoscopy showed no MC. We have the same dr.
The fact that you didn't notice anything on Culturelle is a good thing. I don't either, which is why I take it. I tried a multi-strain probiotic once, Dr. Mercola's, and it almost sent me to the hospital with rapid transit D and dehydration by day 5! My doc ordered a complete stool analysis from Genova Labs (another worthwhile test), which showed I actually had good levels of lactobacilli (to his surprise) even when off the probiotic for 3 days. I credit the Culturelle for that.
I forgot to say B-complex is hugely important too. I take all my vitamins as capsules or softgels. No tablets.
I forgot to say B-complex is hugely important too. I take all my vitamins as capsules or softgels. No tablets.