Newly Diagnosed

Jaxattax · Post by **Jaxattax** » Thu Aug 18, 2016 8:58 am

So I was diagnosed with LC yesterday, after months of trying to figure out why I was having massive abdominal cramps and chronic diarrhea since ~ Feb / March 2016. My job involves child supervision so I had to take a bit of time off work it got so bad. Went through the whole colonoscopy, celiac testing, etc. and everything was normal. Since my MRI in early July I haven't had much in regards to symptoms regarding frequency or crazy ab pain (nothing that stops me from everyday life) - still not 100% though.

Yesterday the doctor told me that the biopsies confirmed I had LC, and that it didn't increase my risk of cancer - that it was just more of a nuisance. She said that I should be able to control it with a high fiber diet and if I avoid ibrupofen or advil (which I don't take anyway) If it gets worse though I have to go see her and they will treat me with steroids.. but getting into her office takes a few months. Before yesterday I hadn't even heard of Microscopic colitis let alone lymphocytic colitis - so of course I've been trying to get as much information as possible. A lot of it seems to contradict what my specialist said in regards to diet.

Everything I'm reading about LC seems to point to low fiber low fat diets for LC. Not trying to go against what the doctor said but I wasn't given a whole lot of information and didn't know what to ask. I don't want to go against my doc but I find the stomach cramps and the D does occur more frequently when I have high fiber foods. I also don't want to be doing more damage to my colon. I feel so overwhelmed right now - I'm not feeling too bad physically today but I know how bad it can get and trying to get into see the specialist takes months.

I guess I'm interested in what other peoples diets looked like, how their doctors' support looks like? I feel like I don't know anything about LC and I just want some answers and to feel 100% again. Sorry for the long post, still trying to wrap my head around everything. Although it's nice to know what's wrong and have a name attached to my problems - there's still a lot of unanswered items about MC.

Post by **tex** » Thu Aug 18, 2016 9:37 am

Hello Jax,

Welcome to our Internet family. You are correct and your doctor is not only wrong, but apparently clueless — fiber is definitely contraindicated for LC. And the celiac screening tests that you were given that she very likely claimed ruled out gluten sensitivity are worthless for LC patients, because they cannot detect non-celiac gluten sensitivity. Well over 90 % of us are highly sensitive to gluten, but the celiac screening tests always give negative results for us (unless we are actually a celiac). The mainstream medical community does not have any official way to diagnose non-celiac gluten sensitivity, even though published research shows that it is a very common problem.

Conclusions These findings reveal a state of systemic immune activation in conjunction with a compromised intestinal epithelium affecting a subset of individuals who experience sensitivity to wheat in the absence of coeliac disease.

Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of coeliac disease

This happens because when the genes that predispose to gluten sensitivity are triggered, the genes that are predisposed to gluten sensitivity are also triggered in most cases. Gluten sensitivity causes increased intestinal permeability, and that opens the door to other food sensitivities as partially-digested peptides from other foods are allowed to enter the bloodstream, causing the immune system to produce antibodies against them. That makes LC a self-perpetuating disease, because the inflammation will continue to be regenerated with every meal unless we change our diets to avoid the foods that cause the production of antibodies. You can download a fact sheet about LC/CC/MC from the Microscopic Colitis Foundation at the following link:

http://www.microscopiccolitisfoundation ... 080916.pdf

Again, welcome aboard, and please feel free to ask anything.

Tex

Gabes-Apg · Post by **Gabes-Apg** » Thu Aug 18, 2016 1:49 pm

Welcome Jax

if you spend some time reading some of the posts and discussions you will see how important diet - namely diet changes are in regards to reducing symptoms.

Good areas of the site to read are the success stories area, and posts in the main message board that contain the word new /newbie etc

we have also prepared a guidelines to recovery to assist people embrace the range of changes etc
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79

hope this helps

Erica P-G · Post by **Erica P-G** » Thu Aug 18, 2016 8:27 pm

Hi Jax,

This sounds exactly almost word for word how I was told about my LC when I was Dx in April 2012...

Yesterday the doctor told me that the biopsies confirmed I had LC, and that it didn't increase my risk of cancer - that it was just more of a nuisance. She said that I should be able to control it with a high fiber diet and if I avoid ibrupofen or advil (which I don't take anyway) If it gets worse though I have to go see her and they will treat me with steroids.

I had not taken hardly a few pills in my life time of ibuprofen but yet that is what it was mainly blamed on by my GI Dr....smh.

Are all Drs. reading the same answer book to give this practically verbatim diagnosis....incredible.

I hope I'm around long enough to know when the medical community finally wraps their head around this and pin points why many are getting this Dx. I feel like my kids have no hope of not having this happen to them one day...they are fully aware of me and my situation but are hesitant to embrace the possibility of it happening to them too. I believe my mom escaped a serious MC situation when her intestine became permeable and had to have emergency surgery taking her sigmoid colon....she acts like she's never had an intestine problem now.

I am so glad you found us...once we are diagnosed it is with us for life...we all learn how to heal and help keep it under some what control while at the same time accepting it to a certain degree. We are all different...but our stages of grief take their turns, we are here for you

and it does get better!!

Ask lots of questions and read, read, read.

Cheers
Erica

jessica329 · Post by **jessica329** » Sat Aug 20, 2016 6:29 am

Yikes! Maybe if you want to be on the toilet MORE, then eat high fiber food. You will need to determine what works for you, in terms of diet, but generally sugar, processed foods, gluten and dairy are big offenders. Low fat is a tricky word. For example, most of us do well with lamb, but lamb is a fatty food. I would try to focus on "low inflammatory" foods rather than "low fat". But, of course, I wouldn't run to my kitchen and make a big pot of Alfredo sauce.