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gracefullyvictorious
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Post by gracefullyvictorious »

Good morning from the chilly Great Lakes Region of Erie, PA!

My name is Heather. I am 32 years old, a wife and stay-at-home mommy to four kids. My three boys are 11, 8, and 5. My daughter is 2. I may not have a traditional job, but I do volunteer many hours a week to being a Cub Scout den leader, a soccer mom, and a preschool leader at my church.

My back story: Until a year ago, I was a healthy 31 year old. I do have a seizure disorder that started at the age of 17, but while I had children, I was off of medicine and have been seizure free since 2001. I did have stomach issues in 2007, but nothing ever really came of that. But since 2013 when I started working out 5 to 6 times a week and eating a very healthy diet, including grains, dairy, nuts, etc., I felt amazing - until spring of 2014. I began having diarrhea, problems focusing, anxiety, and insomnia. I sought help from my family doctor within a couple of weeks of these symptoms beginning. I was also evaluated by my neurologist to be on the safe side. Nothing neurologically was found and my family doctor said everything was stress related. I just dealt with my symptoms until the end of December 2014. My anxiety was getting the best of me and my family doctor prescribed me Zoloft, 50 mg, on December 28th. While it helped my anxiety, insomnia and trouble focusing, I still had diarrhea. On January 30th, 2015 I began having diarrhea so severe that I couldn't leave the house. If I ate, I was having diarrhea 5-8 times within an hour. I was miserable and contacted my family doctor. They were less than helpful! I was even told that I was being dramatic and that if I was really that sick I should go to the ER. While I was really that sick, I knew the ER only had fluids for me, so I pushed fluids at home and stayed away from the ER. After two and half weeks of this, every single person in my house came down with a stomach bug. Out of the six of us, I was the only one who became violently ill for two days straight. Surprisingly, after this bug had passed, I felt better, but not completely. In the meantime, my family doctor did at least call a GI doctor and made me an appointment. I also had more stool tests and blood tests than I'd ever like to have in the near future. I didn't have celiac or anything else for that matter. Also, as of mid March I have been taken off of Zoloft and put on Celexa 10 mg. I go for a med review on April 30th and I'm certain this will change because it has been mostly unhelpful with my anxiety.

Fast forward to my GI appointment at the beginning of March...I almost cancelled it because while I was still having diarrhea and stomach pains, it wasn't as severe and I had become accustomed to living with it. My husband insisted I go anyway. My appointment ended in my worse fear...a colonoscopy. I had already had a colonoscopy back in 2007, due to stomach problems, but nothing was found and I was told that I might have IBS. Anyway, I HATE the colonoscopy prep and not to mention the doctor started my last colonoscopy without me being completely under - not pleasant! While it had changed since 2007, it wasn't any better for me. I fought the doctor's decision, but finally relented. March 24th was my big day! After my procedure, the doctor came in to tell me that everything looked great that that I probably had IBS. BLAH! He did proceed to tell me that they removed a polyp and took biopsies "just in case". Me being uninformed, I didn't ask why they took the biopsies. Well, on March 26th, I found out why. The nurse told me over the phone that I have lymphocytic colitis. What? What's that? I had never even heard of it. The nurse instructed me to take the steroids that they were calling in and see how I felt in 50 days. OK?! I was given no more information or even a future appointment. So of course I turned to the internet and, wow, talk about lack of information there too - that is until I found you guys!

Where I am today: I did NOT start the steroids. I chose to change my diet first. Since my diarrhea hasn't been severe, I felt I could take that luxury. I have been off of gluten since April 4th....well, minus the one time I ate it without even thinking! OOPS! I've also discovered that I cannot have dairy, nuts, anything containing a lot refined sugars - all make me have intense stomach pains and diarrhea. Giving up dairy has been a battle for me. I'm used to eating full fat dairy often. It's my secret love. :) I'm not talking about ice cream either, I'm talking about greek yogurt, cheese, a glass of milk, and sour cream. I hadn't had dairy in a week or so, but I gave into my cravings and ate some cheese yesterday. BIG mistake, not only did I have stomach pains, I began to itch all over my body. I took Benadryl for the first time in my life last night to help me sleep because of the itching, but I'm still itching today. UGH! I also have been suffering from brain fog and joint pain in my hands. I will add that my mother also has autoimmune diseases, Graves and psoriasis. She is 58 and has yet to have a colonoscopy, which I'm urging her to have - along with biopsies.

My future goals over the next year:
1.) To keep my faith the center of my life...this is God's battle not mine!
2.) To stay gluten, dairy, nut, and refined sugar free
3.) To find a doctor that will help me navigate through this and my insurance will cover
4.) To have the EnteroLab testing done
5.) To help my family understand my diagnosis
6.) To read Tex's book
7.) To continue to laugh despite my bad days
8.) To not stress over my messier than I'd like house because my bad days still out weigh my good *EAISER SAID THAN DONE!*
9.) To keep a positive attitude
10.) To achieve REMISSION!

Finally, from the bottom of my heart, thank you for the wealth of information you have provided me. I'm also open to any suggestions and thank you in advance to anyone who reads this.

God Bless!
Heather

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Diagnosed March 26, 2015 with lymphocytic colitis
32 years old
Wife and Mommy to four
Grahm
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Post by Grahm »

Heather,

What a beautiful family! Your story is much like everyone's here. I was diagnosed in June 2014. I had always been told I had IBS until it got so bad that I couldn't leave the house. I'm happy to say I pretty much have my life back, thanks to this board of wonderful friends and Tex.

If I stay eating GF and DF and not a lot of sugar I'm good to go.

I did have the Enterolab tests done and that was a huge help right off the bat. I ended up losing about 15 lbs, which I needed to so that was a plus.

I had the brain fog you mentioned along with my joints hurting. They do still hurt if I eat nightshades. I take Mentanx which you can search on here. I think it has helped with the brain fog.

Good luck with your healing
We are all here for you.

Love,
Connie
Live, Laugh & Love Much
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tex
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Post by tex »

Hi Heather,

Welcome to our Internet family. I agree with Connie, you have a very nice-looking family.

You seem to be a self-starter, and you are on the right track, and you're motivated, so I have no doubt that you will get your life back. This disease can be relentless if we allow it to control our life, but it can certainly be controlled by patience, dedication, and careful attention to the details of our diet.

Since you obviously had a mast cell (histamine) reaction to cheese, you might find the short articles at the following links to be helpful. Many of us have mast cell activation disorder (MCAD) associated with our MC, and if left untreated, it can cause additional avenues for symptoms to develop (as you have already discovered).

Here is some basic information about mast cells, and how mast cell issues are associated with microscopic colitis:

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

Again, welcome to the discussion board, and please feel free to ask anything.

Tex
:cowboy:

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.
lisaw
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Post by lisaw »

Welcome, Heather!

You have a great attitude, and have taken many good steps. Tex gave you good links on mast cells. Many MC'ers, including me, have histamine issues, and take antihistamines regularly or periodically. Getting the Enterolab testing done is a good idea, though you are already discovering your intolerances. I'll also suggest keeping fiber low-stay away from raw veggies and fruits, and stick to well cooked ones, as they are easier to digest.

I also had joint pain, which is much reduced now.

Best of luck on your healing path...

Lisa
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Post by UkuleleLady »

Hi Heather,
Beautiful family. And I think it's great you can stay home with the kids, that's the most important job in the world.

Like many of us, your many volunteer gigs, fitness goals, etc, show you have a strong drive, type A perhaps personality...we MCers do have some perfectionist tendencies, often leading to stress that we don't even know we have until it's too late. Many of us are really into fitness, others have just had a lot of stress in other areas.

You sound very committed and I think that's fabulous. I have had a lot of success following diet changes, enterolab, stress reduction and finding faith. Faith has been a lifesaver for me.

I strongly endorse reducing fiber significantly until D is under control and focusing on your safe meats. Full fat coconut milk (in cans, with no additives if you can find) solved my creamy dairy fat cravings..you can do a lot with coconut milk.

Many of us find turkey and lamb safe. Safer vegetables are over cooked broccoli, green beans, sweet potato.

Best wishes and keep us posted.
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
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Post by Marcia K »

Hi, Heather. Welcome to our group. I have LC as well and this group has been a life saver! Stick with your future goals and you will be right on track to healing. I eliminated gluten and dairy and then added things along the way. Tex's book with help you a lot. I am able to eat bananas and a small peeled apple. In my former life I loved raw vegetables, now I overcook them. Good luck on your journey and please don't hesitate to ask questions.

Marcia
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Post by jessica329 »

Hi Heather,

During the height of my out-of-control flare about 3 years ago, I remember my husband commenting that I didn't know how to sit down and relax. At the time, I worked full-time as an ABA Therapist in an Autism program for the public schools, volunteered, went to the gym almost everyday, rode horseback 1-2x a week (a highly time consuming activity) and was taking a full course load in grad school. My pregnancy in June 2013 forced me to stop and slow down. After a diet change, drugs and a life overhaul, I am now flare free for the most part. I continue to follow a dairy free, gluten free and low sugar diet and off all drugs.
often leading to stress that we don't even know we have until it's too late
Nancy hit the nail on the head!

Good luck and welcome,
Jessica
Lymphocytic colitis August 2012
CathyMe.
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Post by CathyMe. »

I don't have anything productive to add but wanted to welcome you to our group. Beautiful family and I love your attitude!
gracefullyvictorious
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Post by gracefullyvictorious »

Thank you so much for your feedback! I appreciate it!
Diagnosed March 26, 2015 with lymphocytic colitis
32 years old
Wife and Mommy to four
Leah
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Post by Leah »

Welcome Heather. Definitely get the Enterolab tests because you may be reacting to other foods. Soy is a biggie. ..And for some of us, eggs.
This takes time, but you are on the right track.
best wishes
leah
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