NEWBIE NEEDS HELP!!!

DDCPC10 · Post by **DDCPC10** » Fri Oct 12, 2012 12:52 pm

Hello everyone,
This is my first post and I am so happy to find you guys. I have had celiac disease for 4 years and just this week was diagnosed with lymphocytic colitis. This after having diarrhea for a little over month and losing 20+ lbs. (I've actually lost track of how long it's been since I've felt normal)
I am so sick and run down I can hardly get through an 8 hour day of work. Now I am trying to figure out what foods are left that I can eat and that's where you guys come in. I need your help!!! I also need to know if there are certain vitamins and minerals that I'm going to be low on now. Do I run a greater risk of being anemic? Whatever insight you can give will be greatly appreciated.

Thanks

humbird753 · Post by **humbird753** » Fri Oct 12, 2012 3:02 pm

Welcome, Dawn. Sorry to hear you're having a tough time now. I am not the most educated here, but I have learned quite a bit since joining this forum the end of Nov., 2011. I also have LC (diagnosed June of 2010). I fully understand the fatigue you are experiencing. I look back and wonder how I made it to work for 2 yrs. Most here are gluten-free, dairy-free and soy free (plus have eliminated other foods they have found they are intolerant to). I am GF/DF/SF and have regained a lot of energy, and have stopped losing weight. Most will recommend Enterlob testing for food sensitivities (it is out of Texas). Eliminating the foods you are intolerant to will put your symptoms in remission. I (like many others here) have found that staying away from fresh raw vegetables and high citris fruits (only for now) helps the gut heal rather than keeping the constant irritation going on.

I didn't think things could get better, but after I found this forum and was able to understand LC better, things are turning around and I am actually getting my life back. Because I had extreme diarrhea (25 to 30 times a day) I couldn't walk anywhere without the "urgent" feeling of needing to go. Now... I am out golfing, walking, able to go shopping, etc. I have continued to work throughout all of this, but that's about all I seemed able to do. It helped having a bathroom close to my desk at work.

Again, welcome. I am glad you found this forum. You will be getting a lot of help and support here.

:flowersmiley:

Paula

gluten · Post by **gluten** » Fri Oct 12, 2012 3:56 pm

Hi, This is a great site and the people have helped me gain a better understanding of MC and the connection with the foods I consume. I am a leader for a gluten intolerant group and have never met anybody who was diagnosed with celiac disease and then a colitis. A common question I get is "Why are my symptons coming back, I have been following a strict g-f diet for months " I have been gluten, sugar and diary free for ten years and always looked at the ingredients in a gluten free diet. In the bread and dessert mixes sugar is the first ingredient and then white rice flour, tapicoa and potato starch. All these are cheap carbs and feed the negative intestinal bacterias. For carbs, I only use brown rice flour pastas, red or russet potatoes. After reading the posts on this site I now stay away from the high histamine foods and decrease my stress levels. There are many sites that explain about the high histamine foods. A good book to read is " Breaking the Vicious Cycle " The author talks about the dangers of starches. I hope you feel better. Jon

jessica329 · Post by **jessica329** » Fri Oct 12, 2012 4:03 pm

Are you trying any treatments? I started Entocort 10/3/12 and it's been a lifesaver. I can funtion at work and don't have endless diarrhea. I've had only one flare-up at work and it was tolerable. I'm not recommending the meds as a healing solution but just to give you relief as you explore possible culprits. I'm looking into doing the Enterolab testing and am also food journaling. I have cut bread out of my diet (I used to eat TONS) and found that I feel a lot better.

Post by **tex** » Fri Oct 12, 2012 6:40 pm

Hi Dawn,

Welcome to the group. Actually, we have more than a few other members who have been diagnosed with both celiac disease and MC. Since you're already GF, you just need to make sure that you're not getting accidentally cross-contaminated by traces of gluten, and track down your other food sensitivities. As Paula and Jessica suggested, the stool tests offered by EnteroLab can make the job of discovering those food sensitivities much easier.

To give you some ideas for safe foods, you can review several hundred gourmet-class recipes that are free of gluten, dairy, and soy at the link below. These recipes were developed and verified by a professional chef who also has MC.

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

Dawn wrote:Do I run a greater risk of being anemic?

With extended flares, there is a possibility of developing certain deficiencies, because of a malabsorption problem similar to celiac disease (contrary to what most GI docs believe, MC also affects the small intestine in most cases). Many of us take a sublingual vitamin B-12 supplement, and most people who have an inflammatory bowel disease are deficient in vitamin D, so most of us take significant doses of vitamin D (up to and including 5,000, IU daily).

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

Tex

cjbndtsn · Post by **cjbndtsn** » Fri Oct 12, 2012 8:52 pm

Hi Dawn..........you have found your heaven here. These people are brilliant and the information you will collect is invaluable. The recipes Tex referenced are delicious.......I've tried several. Stick to this site..........read all day and nite because you can never find out to much here. Welcome aboard Dawn and believe me...........it will get better.

tlras · Post by **tlras** » Fri Oct 12, 2012 9:27 pm

Welcome!

I'm one of those who has Latent Celiac (where blood tests showed positive but biopsy negative). If I were to eat anymore Gluten I would have full blown Celiac. I was diagnosed in July with LC. I'm sure you already know about www.scdlifestyle.com site. They are the ones who informed me about Celiacs not getting much better because they were still taking in way too many grains like corn and rice. You may want to try to go grain free for awhile if you aren't already. Being a Celiac, I'm sure you are already educated on that aspect. I'm GF/DF. Going Dairy free helped a lot with the D. I've been lucky with the Pepto treatment (4 dose a day for 8 weeks). Works great for me!

I've had D since April....would take Imodium on the weekends so I could get out. Just had bloodwork and no deficiencies so far which is amazing to me after all the D.

There is tons of information on this forum and the meds that a lot of us use. Entocort seems to be the top one. I'm lucky to stick with the OTC stuff till I tweak my diet more. I recommend ordering Tex's book. I get mine in a few weeks!! Good luck!

@Paula....Wow! Love your success story No meds? You inspire me as well!

@Gluten....having a hard time with the carbs. I need them to gain weight. But thanks for the reminder that it's not really the best thing for me. One day when I can eat more veggies and maybe some nuts, I will try my best to give up the corn and rice. Too hard right now. I really don't think I react to them.

Terri

jmayk8 · Post by **jmayk8** » Sat Oct 13, 2012 7:38 am

Hi Dawn,
We are similar, I was dx with Celiac 5 years ago and 1.5 years ago dx with LC. After many attempts at trying different meds (which never really helped) I am gf, df,sf,eg and stay away from my reactive foods (found from mrt testing). I currently take a probiotic and 1 immodium every few days-I do not take any vitamins except for vit D. Good luck, this is the best place to get info!
Jenny

DDCPC10 · Post by **DDCPC10** » Sat Oct 13, 2012 9:32 am

jessica329 wrote:Are you trying any treatments? I started Entocort 10/3/12 and it's been a lifesaver. I can funtion at work and don't have endless diarrhea. I've had only one flare-up at work and it was tolerable. I'm not recommending the meds as a healing solution but just to give you relief as you explore possible culprits. I'm looking into doing the Enterolab testing and am also food journaling. I have cut bread out of my diet (I used to eat TONS) and found that I feel a lot better.

Hi Jessica,
My doctor had prescribed me Entocort but it requirest a prior authorization from my insurance company and I am waiting on the approval. In the meantime I am taking Immodium and have been off and on for the past month without much relief. I have been following a gluten free diet for the past 4 years and I don't care for any of the gluten free bread that's on the market so I haven't eaten bread in a very long time. Do you have any other suggestions? I'm trying to combine a gluten-free diet with a LC diet and wrap my head around all of this. Right now I'm just a little overwhelmed by it all.

Dawn

DDCPC10 · Post by **DDCPC10** » Sat Oct 13, 2012 9:50 am

Thanks everyone for all the input. Everyone has been very helpful and has given me a lot to think about and a lot of helpful tips. I go to the Doctor on the 17th and I have several things to ask him now and several things that I am going to make sure he does. I am hoping that Monday the insurance company has the approval for my Entocort through because the Immodium hasn't been working for me at all. But with everything you all have told me I now know what foods will help and what foods to stay away from. I will be visiting this site on a daily basis for sure.

Thanks again!!

PJ · Post by PJ » Sat Oct 13, 2012 11:32 am

Hi Dawn,

Welcome to the board. I have had undiagnosed MC for 7 years but was diagnosed with LC in August. After reading many posts by those who have achieved success in getting their lives back, I am feeling worlds away better than I have in a long time. I also have two other autoimmune diseases and thereby making my treatment with budesonide (the generic of Endocort) a little dicey but worth it for me.

The first thing I did was to read about and do what most board members have done to give up the big three ( gluten, dairy, soy) at least and try to stay away from high histamine and fibrous foods, at least until the gut has had a chance to heal. The Pepto protocol and Immodium was not reducing my WD at all so I started the budesonide about a month after I went on the diet and I think because I had had such a strict diet I had immediate success with the budesonide. My WD stopped immediately and now I am down to 2 per day.

My GI doc gave me a script for budesonide but it was $1200 per month at the local pharmacy so I purchased it dirt cheap from an online pharmacy. Meds are shipped from India so it could take up to 3 weeks to get through customs. You don't even need a script to order.

I am also taking probiotics, Vit D, some other supplements, and glutamine 2-3 times per day.

As soon as I can order the Enterolab testing I will know exactlywhat exactly to stay away from ...I am still new and trying to find what works for me and I know everyone is different. Best of luck and again welcome to our MC home!

Warm regards,

Pam

humbird753 · Post by **humbird753** » Sat Oct 13, 2012 1:30 pm

Hi Dawn,

Yes it can seem overwhelming at first. I didn't even know what "gluten" was until I came here last year.

You have already cut out the main culprit (gluten). Eliminating Dairy and Soy would be your next steps because according to many here, the intolerances fall in that order. Of course, ordering the Enterolab stool tests will help to quickly identify which foods you are intolerant to.

I have found that by staying with whole foods (foods in their natural state) is best. For example, I find I can eat meat (i.e., fish, chicken, pork and steak), frozen veggies cooked very well or canned veggies (with limited ingredients) and rice, red potatoes or sweet potatoes. I use Earth Balance (soy free) rather than butter and it works for me and tastes great. For fruits, I eat bananas, applesauce and avocados. For snacking, I eat Lays chips, Fritos and love my rice cakes with almond butter on them. Oh - Lara bars are great tasting and help add calories into your diet. I found them in my local store which is called Festival Foods by other snack bars or they can be in an organic/GF area of a store.

I see Tex posted a link to Dee's kitchen - there are great recipes and suggestions on replacement ingredients for your favorite recipes (that is, if you are a cook). I was not, so although I have used Dee's recipes, I mainly stay with whole foods.

It is highly recommended by most if not all here to stay away from the processed foods as the additives can contain gluten, dairy or soy, or whatever else you may be intolerant to. A rule of thumb Tex mentioned and I like to stick with is if it has more than 5 ingredients, I don't eat it.

Glad to hear you'll be seeing your doctor next week. Also, as mentioned already, don't concern yourself as to whether your insurance company will cover Entocort because many do get it without a script and at a very reasonable price from India, and have no problems with it.

I can remember how I felt the first day I came to this forum - VERY relieved when someone replied to my post, but also very overwhelmed. Just remember, we are all here. I found it comforting to know someone understood how I was feeling. I hope you do as well.

Paula

Leah · Post by **Leah** » Sun Oct 14, 2012 8:07 pm

Welcome Dawn. It all can be so overwhelming, I know. I was diagnosed with MC in February. Went DF right away. Then I started Entocort. It helped right away, but I finally listened to the advise here and went GF. I also took out all raw fruit and veggies, tomato products, and fiber foods. I realized that to be able to heal and be able to get off of the drug, I'd have to take out all the foods that inflamed and all the foods that irritated my gut. It worked. I was able to SLOWLY step down the dose until I was done. Don't rush it. It usually takes more time then the doctors want to give you. For me, it took about 6-7 months to get off of them completely. Since then I have been able to add some things back in and only go once a day. I will always stay GF,DF, and SF I believe...... although this weekend i was away and had some soy and wine. I pain the price, but I bounce back much faster now.

Good luck. Remember that this whole process takes time and don't be surprised if your doctors know NOTHING about the role food plays in this disease.

Leah

DDCPC10 · Post by **DDCPC10** » Sun Oct 14, 2012 8:13 pm

Paula,
Thanks for the snack ideas! Snacking is my weakness and I was wondering about chips and things like that. I've done really well with figuring out what I can/can't have with the celiac over the past few years but now with the LC it has kinda thrown me for a new loop. Once I get my symptoms under control it may not be so bad it will just be a matter of figuring out what things trigger and what don't.

You've definitely helped me out a lot.

Thanks.

jessica329 · Post by **jessica329** » Sun Oct 14, 2012 8:34 pm

Dawn,

I also stick to whole foods, no junk food, no deserts, no dairy and nothing processed. The only meat I eat is humanely raised chicken, local pasture raised beef (once a week), and bison 1-2x a month. I also eat A LOT of soup- no sodium organic chicken broth, cooked mushy veggies, chicken and basmati rice. That sucks about your insurance. I'm calling mine tomorrow to see if they'll cover the enterolab testing.