Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
I am 24 years old, and have not been officially diagnosed with MC. My Mom was diagnosed a little more than 6 months ago and she was the one who told me to get into the Dr asap.
The hope of knowing that whatever I have has a name is the only thing keeping me going. My symptoms have gotten worse over the last year to the point where I am missing work, I am sleeping all the time, I am afraid to even leave the house sometimes.
I found this forum hoping that being able to talk to people with the same issues would be some form of comfort where right now I have none.
I'm so sorry you're miserable, but there is hope...
Is your mom on this board? Has she made dietary changes to help deal with her MC? The fact that you both have symptoms may be an indicator of shared genetics, namely gluten-sensitive genetics. Have you both been tested for celiac disease?
Welcome to the right place. I know exactly what you are going through.....if fact all thousands of these folks know what you are going through so you are not alone. It will get better and you have to believe that. The 1st thing all the experienced folks will tell you is go Gluten Free. That is a biggy. It helped me tremendously!!! I retired because I couldn't leave the house without accidents and was even having them at work. It was the worst. READ READ READ as much as you can here.........these people will give you better advice than your GI.
Best of luck
I don't believe my Mom is on this forum, though I have told her about it. She has been tested for Celiac and it was negative. My very first appointment is tomorrow, so I am going to have them test for everything the can. She tried the gluten free diet but had no success. My sister has similar symptoms as us though hers are no where near as bad as my Mom and me. So we are about 99% positive it's genetics.
It's so embarrassing when you realize that you know where EVERY bathroom is on the way home...and that you are constantly looking on the side of the road for "good places to go." People shouldn't have to deal with this! Is retiring at 24 an option? haha
Hi Delanie, as Cathy stated, going gluten-free is the first step for most of us. Some of us get better within days, some it takes much longer. It really depends on how much healing is needed. Sometimes gluten isn't the only issue and for many of us, dairy and soy (and sometimes other foods) can also cause problems. Unfortunately, most the the tests you're undergoing probably aren't going to find an answer for you unless they are doing a colonoscopy and are looking specifically for microscopic colitis. Given your age, that's probably not going to happen as many doctors consider it a disease for older people. We have found that not to be true here and there are even children who have been diagnosed with it. Most of us here were not diagnosed celiac but probably have worse issues than many of them. Usually a celiac diagnosis doesn't even happen unless there has been extensive damage. I think I read the average celiac diagnosis takes 10 years.
I'm sorry you are having to deal with this at such a young age. But you can get your life back. Read as much on here as you can. Our moderator here has also just written a book (there's a link at the top of the page) that can really help catch you up to speed quickly......and the best part is....this information works. Many of us have stumbled here after trying everything else. Wishes for good health. Deb
I know that I have a dairy intolerance and foolishly I will ignore it sometimes. I guess there is part of me that doesn't want to believe I may have a gluten intolerance, but the more I read up on it the more I realize that it is very likely.
I am hoping that with knowing my mothers diagnosis they will be more likely to do the colonoscopy.
I guess there is part of me that doesn't want to believe I may have a gluten intolerance
I think that was probably the case with most of us. Fortunately we live in a time where decent gluten-free breads and pastas are available and it really isn't as bad as you think it is going to be. It sure beats feeling awful!
Hi, I was tested negative for celiac disease and was diagnosed with MC after the colonoscopy. Tell the doctor that your mother was diagnosed with MC. He should refer you to have a colonoscopy. If he does not find another doctor. Gluten antibodies were found by Entrolab and then I went gluten-free. I am also refined sugar, diary free and watch what foods that trigger a flare. I take probiotics. Enzymes with dinner and supper. Today, a gluten free diet is easy because there are many more choices compared to ten years ago when I went gluten free. I hope you feel better. Jon
Thanks Jon, I have a HUGE list of things to talk to my Dr about tomorrow. Someone suggested I take something called Kefir because the probiotic pills just weren't doing anything for me. I have been reading up on the gluten free diet and it doesn't seem as impossible as I first thought.
Delanie,
I was the biggest skeptic about Gluten Free before I was dx with CC. After months of bad problems........I decided to try GF and its really NOT bad at all. I'm a lucky one that has only had to give up gluten but there are tons and tons of GF things out there. Check out Dee's recipes..............they are delicious. Udi's is a good brand for bread and muffins....look around.........Lay's potato chips, ketchup............tons of stuff. You can do it and stick with it.
Good Luck
Welcome Delanie. I agree with all of these folks. You need to have a colonoscopy with biopsies. It certainly sounds like you have MC. At first, I didn't want to believe I was gluten intolerant, so I just gave up dairy for the first month. But I only saw slight improvement and I knew I would do anything to feel better, so gluten was next. Gluten antibodies last a very long time in your body, so when you "try" gluten free, it should be for about four months before giving up.
The four main inflammation makers are gluten, dairy, soy, and eggs. Then there are the foods that aggravate an already inflamed gut and should be removed until there is some healing. Those are RAW fruits and veggies ( salad), beans, and acid foods. Nightshades might also be a problem ( tomatoes). I know it sounds overwhelming, but the healing process takes time and you can add some of those things back in when you feel better.
The drug Entocort is very effective for many of us in slowing down the symptoms ( I used it ), but it has to be done in conjunction with the diet or you will be back to square one when you get off the drug. Read as much as you can on this forum. Get Tex's book and learn as much as you can. There is a wealth of knowledge and support here.
Let us know what happens with you and please ask any questions.
Hi Delanie,
As a mom who passed one GS gene to both my daughters and 2 of my grandkids, I think it is wonderful that you found this place where you can find answers and support and I hope your Mom will come here too. We've all been there, most of us had the completely worthless blood test for celiac and were negative. I hope you have a doctor with an open mind tomorrow, but don't have your expectations set too high, as most of them don't have a clue and won't have any idea what you are talking about, as it seems that once they get their MD, they stop learning from anyone but the Drug Co. Reps.
Most of us have had the Enterolab testing done and I think having that done gives you peace of mind and a resolve to fix yourself if you do have GS genes. Going GF was the easiest thing I've ever done and I don't know how long your Mom tried being GF, but it takes a good 6 months or more of absolute and complete avoidance of any gluten for most of us to achieve remission. I did it w/o drugs, using OTC meds and being GF. My daughters did this too. It's not the end of your life by any stretch, it's the beginning of finally feeling good for once in your life. I thought I was dairy intolerant before I was GF, have no problem with dairy now.
We're all different, but you have made a huge step, IMO, in finding this place. We are here for you. Good luck tomorrow.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Welcome to the group. I hope you can find the solutions that you are searching for by asking questions and reading here.
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.
You've already gotten some great advice. I just learned from these gals myself and our administrator, Tex, is an expert! Going GF has been easy for me (GF since July 1). Going dairy free was a little harder but I'm getting used to it. It has definitely improved the D but I still had it so now taking the Pepto regimen which is working out great. But the key is you have to stay strict with the diet or there will be relapse after discontinuing a med.
Be careful of contamination in your own kitchen. Unfortunately, my hubby and kiddo aren't gf so I'm cooking basically 2 meals. I do not use the toaster as their bread goes in it. If I want toast I suppose I will go out and buy my own toaster. I also have to be careful with the colander to avoid cross contamination. I just realized the other day (so stupid) that the spatula I used to make my family some pancakes, I then used when making the eggs, then I ate the eggs. I could just slap myself....done this 3 times till it hit me. Now I still don't know if I react to eggs or if it was the Gluten contamination. Will try out the eggs again but more carefully with the cooking/utensils.
I think I may be reacting to another food but not sure just yet as Pepto keeps me symptomless. I will know sooner or later.
Good luck and hang in there. GF definitely got rid of my stomach pain, nausea and bloating. Though I do get occasional bloating but not near as bad.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
