Hi All, I've just FINALLY been diagnosed with LC and I can't tell you what a joy and relief it is!!! I have had D for 27 years. Got tested for various parasites and things over the years, but couldn't get any drs to take it seriously, especially since I downplayed it out of embarrassment.
Fast forward to my 40s - arthritis, autoimmune symptoms got more attention because they are easier to talk about...I was diagnosed with Sjogren's and Fibromyalgia a couple of years ago. Tried Whole30, which helped my pain a lot because I eliminated grains, dairy, legumes, sugar, but the D got worse and worse AND WORSE because duh, I was replacing all those calories with fresh fruits and veg. The worse it got, the more veggies I ate...because I was certain that more veggies would do the trick (can you guess where this is going?) until FINALLY it was bad enough that I HAD to go to a GI doc because the accidents and nighttime stuff were finally too much, even for me. I was so dehydrated that I had constant headaches and could mold the skin on my hands into cool stand-up shapes to gross out my kids, but didn't know it because I drank gallons of water - was ALWAYS dying of thirst. Literally - it was going out the wrong hole and never made it to my blood!
So thankfully I got a diagnosis of LC with the first colonoscopy / biopsy, and am currently waiting on Celiac results from a second one (why didn't they do them together?). Waiting on Enterolab results too - I went whole hog and got the biggest sets of tests plus a few since my whole darn body is falling apart. I am interested in the info connecting MC to Sjogren's Syndrome - hope as I deal with my intestines my joints and dry eyes/mouth will respond - they seem to be. Well I can already say my horrible thirst has settled tremendously so absorption of water must be going on now.
Meanwhile, Dr wanted to put me on Entocort, but I declined, hoping to manage with diet, especially since I knew W30 helped my pain, and now I had an idea about why the D got so bad. I went on SCD and am currently eating meats, seafood, avocado, banana, cooked apples and pears, OVERcooked carrots, greenbeans, squash and tried asparagus today. I am avoiding nightshades - tried a bell pepper and had joint pain the next day. Adding an item every couple of days. So far only bell pepper and pineapple have caused trouble.
So after 2.5 weeks I am delighted that the D is down to 2 in the morning, no longer "brisk" as they say, and my joint pain is MINIMAL. Can I say that again? I am sleeping through the night without tossing and turning in pain. I am so looking forward to knowing my specific food sensitivities so I know what not to add back, and planning to continue adding items slooowwwlllyyy.
This afternoon I was craving sweets so horribly badly, but I read the stories on the thread about accidents and thankfully that reminded me of the path I just left.
So...praying that stress or something else doesn't cause a flare - cold weather is very difficult for me. But happy to have some answers and A PATH toward more info and hopefully healing. Also happy to have found this forum!!
Laura
After 27 years of D, a diagnosis!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
After 27 years of D, a diagnosis!
Let me Google that for you.
Hi Laura,
Welcome to our Internet family. Wow! You're had a really long time to have to deal with this before finally receiving a diagnosis. Congratulations on finally finding a doctor who wasn't asleep at the wheel, like so many of his colleagues.
You're obviously a quick study, because you appear to already have a good plan in place, and you're on track, and you're apparently making surprisingly good progress. Many people who have been reacting for many years have a tough time persuading their symptoms to slow down so rapidly.
I have no doubt that you'll get your life back, because you are obviously motivated. Again, welcome aboard, and please feel free to ask anything. I hope that the relatively rapid pace of your recovery continues, but please don't be discouraged if you have a temporary setback or 2, because they are relatively common during recovery.
Tex
Welcome to our Internet family. Wow! You're had a really long time to have to deal with this before finally receiving a diagnosis. Congratulations on finally finding a doctor who wasn't asleep at the wheel, like so many of his colleagues.
You're obviously a quick study, because you appear to already have a good plan in place, and you're on track, and you're apparently making surprisingly good progress. Many people who have been reacting for many years have a tough time persuading their symptoms to slow down so rapidly.
I have no doubt that you'll get your life back, because you are obviously motivated. Again, welcome aboard, and please feel free to ask anything. I hope that the relatively rapid pace of your recovery continues, but please don't be discouraged if you have a temporary setback or 2, because they are relatively common during recovery.
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.
Thanks!
Thanks for the welcome! I know my innards responded pretty fast! I was expecting it to take months....I'm still like a 6 on the poop chart. (http://articles.mercola.com/sites/artic ... stool.aspx) It's D, but not rightthissecondurgent and that alone is darn wonderful.
I did a lot of research back when I did Whole30, my husband is GF and has other food sensitivities, and I'm not an emotional eater (most of the month) so the elimination diet hasn't been a big deal at all except that I love my veggies crisp-tender and not limp. BUT I love wearing a single set of clothes all day too. Haha! So yes, I'm motivated, completely on board with the diet change, and a rule follower.
My downfalls will be my hormones and the cold weather - at least they have been non-food problems for my non-intestinal symptoms. I go crazy and eat weird stuff when the hormones act up. I expect to have a hyst/oophorectomy this year (mother and maternal aunt with ovarian cancer), so the hormones will be addressed, I guess. I have no idea if menopause will make me crazy/impulsive/hungry. Or if the whole thing will make me too tired to prep food/cook/care. Or depression could rear its dark head and knock me down too. We will see.
At the very least, a diagnosis in addition to the Sjogrens/fibro is really motivating to me - for years I thought if I would just be stronger and get my shi* together (literally!) and it would all just settle down. Or that it was physical symptoms of depression and I somehow figured that I could and should just get over it. So now my poor shredded innards have some cred - they really ARE sick! They DO need my help.
I did a lot of research back when I did Whole30, my husband is GF and has other food sensitivities, and I'm not an emotional eater (most of the month) so the elimination diet hasn't been a big deal at all except that I love my veggies crisp-tender and not limp. BUT I love wearing a single set of clothes all day too. Haha! So yes, I'm motivated, completely on board with the diet change, and a rule follower.
My downfalls will be my hormones and the cold weather - at least they have been non-food problems for my non-intestinal symptoms. I go crazy and eat weird stuff when the hormones act up. I expect to have a hyst/oophorectomy this year (mother and maternal aunt with ovarian cancer), so the hormones will be addressed, I guess. I have no idea if menopause will make me crazy/impulsive/hungry. Or if the whole thing will make me too tired to prep food/cook/care. Or depression could rear its dark head and knock me down too. We will see.
At the very least, a diagnosis in addition to the Sjogrens/fibro is really motivating to me - for years I thought if I would just be stronger and get my shi* together (literally!) and it would all just settle down. Or that it was physical symptoms of depression and I somehow figured that I could and should just get over it. So now my poor shredded innards have some cred - they really ARE sick! They DO need my help.
Let me Google that for you.
Laura, welcome aboard.
Your story sounds very similar to mine, except yours has taken a lot longer to get a dx.
Sounds like you already have a good plan started, just wanted to welcome you.
Your story sounds very similar to mine, except yours has taken a lot longer to get a dx.
Sounds like you already have a good plan started, just wanted to welcome you.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Laura,
The cold sensitivity issue raises a question about possible hypothyroidism. But I would assume that surely your doctor has checked your Free T3, Free T4, and TSH levels. If not, they definitely should be checked because with MC, we are approximately 7 times as likely as someone in the general population to have thyroid problems.
Tex
The cold sensitivity issue raises a question about possible hypothyroidism. But I would assume that surely your doctor has checked your Free T3, Free T4, and TSH levels. If not, they definitely should be checked because with MC, we are approximately 7 times as likely as someone in the general population to have thyroid problems.
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 Laura. Welcome! Wow, you have done your homework and it's great that you got such fast results.
When it comes to hormones, the thing you will most likely feel the most is hot flashes. I am currently taking Tamoxifen to block my estrogen receptors. It's like going through menopause QUICKLY. ANYWAY, I'M SWEATING LIKE CRAZY Especially at night. If this starts up with you, message me and I'll tell you what I have been doing for that.
I'm also going to tell you that all is not lost when it comes to crisp veggies. it takes some time to heal the inflammation, but when you do, you might be able to add many foods back into your diet. My MC was dx three years ago. The first year was all about healing. Then I discovered that I had histamine issues that were preventing me from full remission. Now, I take OTC antihistamines and that's it. I am still Gluten ,dairy, and soy free… but have been able to add in RAW veggies, salad,some beans, small amounts of raw fruit, cashews and almonds… and many other things ( like sugar). So, I am here to tell you that you are doing so well, that your future looks bright. Since you have joint pain, you might want to stay away from nightshades for good, but it turns out I can eat those too. I was very happy to get potatoes back!
Anyway, keep us posted and good luck
Leah
When it comes to hormones, the thing you will most likely feel the most is hot flashes. I am currently taking Tamoxifen to block my estrogen receptors. It's like going through menopause QUICKLY. ANYWAY, I'M SWEATING LIKE CRAZY Especially at night. If this starts up with you, message me and I'll tell you what I have been doing for that.
I'm also going to tell you that all is not lost when it comes to crisp veggies. it takes some time to heal the inflammation, but when you do, you might be able to add many foods back into your diet. My MC was dx three years ago. The first year was all about healing. Then I discovered that I had histamine issues that were preventing me from full remission. Now, I take OTC antihistamines and that's it. I am still Gluten ,dairy, and soy free… but have been able to add in RAW veggies, salad,some beans, small amounts of raw fruit, cashews and almonds… and many other things ( like sugar). So, I am here to tell you that you are doing so well, that your future looks bright. Since you have joint pain, you might want to stay away from nightshades for good, but it turns out I can eat those too. I was very happy to get potatoes back!
Anyway, keep us posted and good luck
Leah
Thyroid
Tex, you assume wrong, sadly. :-( My dr did the standard thyroid test and refused to do the full range of tests because the one test was "in the normal range." I can't order the tests for myself and have been at a loss. HOWEVER, that was before my MC diagnosis, since I just got that a few weeks ago, so now I have more ammo - since MC could be caused by thyroid issues, and I need to know if it is. And possibly my GI doc would order the tests...I'll have another appt w him after they call me with the results from the Celiac biopsy, which should have been today, but apparently wasn't since it's after 6.
ANYWAY, thanks for the nudge - I have wanted those tests for a couple of years now - quite a few of my symptoms point to thyroid issues, but are also easily dismissed as perimenopause and just getting older. So frustrating!!!
ANYWAY, thanks for the nudge - I have wanted those tests for a couple of years now - quite a few of my symptoms point to thyroid issues, but are also easily dismissed as perimenopause and just getting older. So frustrating!!!
Let me Google that for you.
Laurah, oftentimes it is worthwhile to get those tests ourselves. Granted we have to pay for them but I think it is worth it. A good site for info is here www.stopthethyroidmadness.com Deb
Doctors love to try to cover up their inability to properly diagnose patients by blaming everything that they don't understand either on the patient, or on "old age". 12 to 15 years ago I had arthritis symptoms so bad that I had to use a cane just to be able to get around. After changing my diet, and allowing time for my gut to heal, my arthritis went away, and I haven't needed a cane since then. I reckon it wasn't "old age" after all.Laura wrote:quite a few of my symptoms point to thyroid issues, but are also easily dismissed as perimenopause and just getting older. So frustrating!!!
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.
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brookevale
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Your story is so similar to mine however I've been ill with the D since December 28, 2013. I am so glad things are working so quickly. That is great news! I have severe headaches and that thirst issue--I thought I was the only one. I drank gallons of water and was always dehydrated. But I was losing water through the D AND urinating every 1/2 hour. I am taking valerian now and I am retaining water.
Strongly believe I have a form of MC that began to flare December 27, 2013.
44 year old married mom to three sons ages 26, 17, and 2, a 21 year old stepdaughter, and 18 year old stepson. I also have a beautiful granddaughter who is one.
44 year old married mom to three sons ages 26, 17, and 2, a 21 year old stepdaughter, and 18 year old stepson. I also have a beautiful granddaughter who is one.
