Thank you for being here.

[CodeMonkey819]

I just wanted to thank this community for being here. It's been about 1 year since LC diagnosis (SIBO 3 years ago), and going through a low point in trying to get back to some normalcy. I have an amazing spouse but I'm too embarrassed to talk to him about my symptoms in any real detail. I sleep in the guest room with more regularity than I like, and I've had to sneak in so many loads of early morning laundry then I'd ever like to admit. My GI doc (my 2nd after my 1st wrote me a script for antibiotics for SIBO and no follow up plan) has been trying everything she can to help me (started diet even before medications, FODMAPs specifically). I also got blood work for food intolerances done with a local nathuropath clinic, so doubling up my vigilance on removing them. I had a good 2 months where I was finally doing better (no explosion if you get my drift) and then the last month after going off of a 2nd budesonide tapper, D has comeback with a vengeance. It's 2 steps forward, 3 steps back you know. I have my best gal friend I can talk to about the gory details, but its just so embarrassing that I really don't want to fill our conversations with what really has come to dictate my life. I know I'm preaching to the choir, but just knowing there are others out there who understand and who have persevered means so very much. You spend so much energy just functioning everyday, and you do, and people around you have no idea how much you have to do just to seem normal. "You can't be Celiac, you don't look sick enough." They have no idea how each day is a battle with one of the most impart parts of being human, food. I love food, but I don't trust it. I lost 10 lbs in the 2 months before being diagnosis due to being afraid to what eating would do to me. Cooking is my hobby and I'm trying to reclaim it. My spouse can attest that eating the same things every day or every meal is just a nightmare for me. Each time I make progress, I get knocked back down. I tell myself, feeling down is just a symptom. I need to keep my chin up, I can do this. I will get through this. We all have those moments, when we waver. I'm 31 years old. We want to start a family in about 6 months and I'm worried I can't get enough nutrients that it may hurt my chances of conceiving or growing a healthy baby. I don't know if these fears are founded and I'll work with my docs when the time comes, but this was to be the year I got my body ready, not the year it revolts. I also changed jobs in the last 3 months and I doubt the stress of that is helping, but "Ain't no rest for the wicked"/"Just keep swimming, swimming, swimming" as they say. Thank you for listening/reading. It just helps to lay it all out there for the universe and to know I'm not alone in the cosmos. Thank you for being here.

[Grahm]

It just broke my heart to read this. Obviously I've been married a lot longer, I'm 60. My husband is very understanding and sympathetic which I'm sure yours is as well.

You need to read, read and still read more post about your beginning this journey. There is a book that Tex has written that you need to order to understand this monster better.

if you can, the testing by Enterolab has been so helpful to most of us here.
I did not take the meds (I did try but they had too many side effects for me). When you try to stop them you really have to taper slow and easy listening carefully to your body so that you wont be thrown right back in full explosive diarrhea.

After some healing has occurred you can add in vit d (there is also a test to ck your numbers for that).

You have come to the right place. You can ask any question imaginable and I'm sure we've all been right there.

Welcome and happy healing.

Love,
Connie

[tex]

Hi Code Monkey,

Welcome to our Internet family. Like Connie, I'm sorry that you've been trying so hard to get your life back, but all your efforts have ended in frustration. This is a cruel, life-altering disease that's misunderstood by almost everyone, including most doctors. It seems to be intent on driving us into our own little shell of isolation, loneliness, and hopelessness, until we are able to figure out a recovery plan that actually works, and we manage to gain control.

We created this discussion board over 10 years ago because we were sick and tired of being sick and tired, and we were sure that there had to be better ways to treat this disease than the futile treatments that our doctors prescribed. And as you have surmised, we have found the key to be in our diet. By sharing and comparing experiences we found that diet changes are indeed the key to remission (just as you have recognized), but we are all different, so we each have to work out a treatment plan that suits our own personal situation.

We can indeed get our life back, but to do it we have to avoid each and every food that causes us to produce antibodies. For some, that may be only 1 or 2 foods. For others, it can be many foods. But with the help of others here, we can develop a safe, healing diet, and stick with it long enough for our intestines to heal, and we can slowly but surely develop a new "norm" that will allow us to restore our health and enjoy life again.

Again, welcome aboard, and please feel free to ask anything. For some of us, recovery is a relatively short and easy path, but for others it can be a long and difficult journey. Whatever the situation, we will surely try to help you make your journey back to health as smooth and efficient as possible, so that you can get on with your plans for the rest of your life.

Tex

[Erica P-G]

Hi CodeMonkey,

It may help if you shared what have been eating.

Also if you have been reading quite a bit here have you put yourself on a lingual VitD3 and elemental Topical Magnesium plan?

Between the diet and these supplements and sticking to them, I have healed in an amazing way and sooner than I thought I may have. I'm not perfect, but the D hasn't returned for over three weeks now.

Stress is no good for us either, and since you are on meds if you have a plan to taper them it will take a while, but don't taper to quickly I hear the D comes back worse than before. I chose not to use meds....but I am for what every someone feels is right for them.

I hope your body finds a balance soon
Erica

[crervin]

Don't despair about getting pregnant. When I was pregnant with my 3rd child (wasn't diagnosed yet but had GI problems for 3 years prior to pregnancy), my gut actually calmed down. I wanted to stay pregnant for the rest of my life. I didn't eat as healthy as I should and that did bother me, but she is healthy. I even breastfed her for 3 years. I really don't know how I did that looking back, especially with gut problems/ D. It's doable, so have hope and you will probably feel better that way!!!

[CodeMonkey819]

Thank you very much for the kind thoughts and replies. After combing the interwebs, online medical journals, and articles for the past year and finding very little, it really is the most comforting to know you're not going through this alone. There's much in common with mental health issues in this respect. People look at you and think you're fine, and from the outside you do seem so. There's so much embarrassment and shame that you keep so much to yourself. I dealt with symptoms on some level for the past 4 years and it took having a blowout at work to get me back to a doctor after being blown off by the 1st GI. And I come from a medical family! Past is past. Time to move forward.

I've been lurking on this message board for a little while before posting and reading up on all the advice and ideas. I just finished reading "Microscopic Colitis" yesterday. I actually have said, exasperatingly to my spouse "I am sick and tired of being sick and tired." Seriously! Word for word! I know for certain that now's the time to be detailed and get serious about identifying my triggers and irritants. The blood work I've had done has identified the levels of IgA, IgE, and IgG antibodies for common food, but for complicated reasons I've neglected some of the lower levels. Kicking them all to the curb for now. I have a lovely crockpot of chicken, rice, and carrots for the next few days, and the spouse is onboard for feeding himself for the next few weeks while I let my gut heal. I'm no longer on medications (with the exception of prescription grade probiotic) and we did a very long taper this last time. Even though I'm starting to have flare ups they aren't as severe and I want to try to focus on diet and proper nutrients before going back to heavy duty drugs. I have Imodium for those night I just know it's going to be bad. I can't do Imodium too much as it interferes with one of my allergy meds. I'm doing the shots to build up my immune system and get off the daily allergy meds. The Imodium isn't approved for use during pregnancy either. My GI doc knows I want to start a family soon and she wants to keep me off of meds that could be dangerous. She's a new mom too. I really do have a good doc this time and maybe its because I'm in a part of the country thats open to all types of treatment, she's been pushing everything we can do before hitting medications hard. I want to really give diet a try for a few more months before requesting coming back in sooner. I was doing really well when we last met and decided I didn't need to come back for 6 months. I know it saddens her too when I come back and I've had a set back. I can see her frustration too in not being able to help more.

I have a sister with Multiple Sclerosis and my sister-in-law has Crone's, so auto-immune issues run in my family and will continue. My father and my aunt have also had severe GI issues, so I'm almost positive of a genetic link. I've been on VitD3 supplements for years due to my sister's MS and living further up north. My VitD levels plummeted after moving up north, so I'm up on that. I've been good with keeping up on my vitamins and fish oil, and my most recent blood panels came back good. However, need to reevaluate the form. Gummies keep my taking them but may be too much sugar that the moment.

And this got so long....we're in too deep...might as well keep going...

I've also read that colitis seems to quiet down during pregnancy, UC as well. My sister with MS, her symptoms were also better during pregnancy. The amazing power of the body to protect itself while growing new life. Quite amazing. And amazing to know others have gone through pregnancy with this and everyone came out relatively unscathed.

Hope, that is exactly what I've feeling. Thank you for helping me be hopeful again.

~Mary

[CodeMonkey819]

Ooo, also I was tested for Celiac twice. Had to do a gluten challenge and still came up negative. The IgA was super high on the naturopath's blood work for wheat gliadin, and get small patches on my face when I'm back on gluten that I have to treat with prescription hydrocortisone cream. SO bye bye gluten. Been lactose intolerant for over a decade. Fascinating the overlaps of intolerances that everyone has.

[Blueberry]

As you mention you are singing to the chore! oh it can be a terribly frustrating disease to deal with and have others understand. I've come to learn it seems to matter little how much I explain my condition, whether to family, friends or health care professionals, no one understands. I began to joke, somewhat, that the best way to know what it is like having MC is to take 3 laxatives a day for a year, and then you might have a slight idea of what it's like. But with that said I've only mentioned that a few times to others, and it still seemed to go over their head in incomprehensibility.

Good luck in finding answers soon and getting your life back. Thought to mention with your mention of being lactose intolerant you might also have a problem with beef. At least this is the latest idea I'm working on for me, with some success, as energy levels are nicely elevated and gut hanging in there when eating dairy and beef free. I read an avoid milk book recently too, and to my surprise the author said the same thing for her, she was lactose intolerant, learned she couldn't handle dairy products well at all, and also found beef to be a problem food for her stomach, so possibly that is a wider adaptation problem.

[Erica P-G]

Hi Mary,

I'm in SE Washington state, I was certain when the wheat began to be cut I might have the worst allergy season to date...but alas my diet changes of no Gluten, Dairy, Soy and Egg and taking 6000 mg VitD3 lingual and around 500-600 topical elemental Magnesium I did not have the runny nose or drainage down the back of the throat as I had the last 20 years that I've noticed those symptoms.

I also was given all the 'Lets try' meds prednisone, budesonide and then when those didn't work (because I wasn't allowed to be on them for any proper length of time with the understanding that I had to change my diet as well), I tried Pepto and Imodium. NOTHING has helped EXCEPT diet changes and adding the VitD3 and Mag and eating my Bland diet for at least 90 days and it has just been in the last 30 days that I have added a couple small foods to my Safe Foods. The VitD3 and Mag work in tandem, both complimenting each other to perform their best, it is hard to increase the VitD without the help of the Mag and vice versa. I was getting plenty of sun along with my VitD3 and could only get my results to 43...I'm sure my VitD has increased now as I am feeling better and haven't had WD for 3 weeks now. Optimal levels of Vitd are between 50-70 for us with MC/LC/CC.

Those AI issues your family is having are surely stemmed from MC and I sure hope with all the info that is complied at this site you come upon a balance that helps you and your family members.

If you are interested in my story and have time to do a little more reading here is my post, it is pretty much like climbing a mountain ;-) http://www.perskyfarms.com/phpBB2/viewt ... sc&start=0 Lots of good information in here, this community really rallied around me and I couldn't have gotten as far as I have without them.

I hope you find your wellness soon
Erica