Hello! New here and newly diagnosed with MC

[Mrs. Poopy Jeans]

Hello friends. My name is Sandi and I've had the worst diarrhea for the last year. I read the portion on this board that MC is treated like the Red Headed Step Child of gastric disorders and I believe it! My PCP was absolutely NO help. I went in with my complaint and without examining me or ordering testing, she proclaimed that I was lactose intolerant. I stayed away from dairy for two weeks. No change. Pooping liquid or near liquid that was orange/brown in color with what looked like mucus. PCP referred me to a Gastro practice where I was assigned a NP.

Had a colonoscopy done. Colon was as "clean as a whistle" they said. But the bad news was that I had Celiac AND MC. Went on a Celiac diet (gluten free) for a month. No change and when I went for the blood test for Celiac, it came back negative.

The pills start. I must have been on 4 different things. Nothing has helped. I am still pooping about 6 times a day. I wear pull up diapers and I still manage to have a toxic waste dump that needs "clean up in aisle six" at least once a week or more. Thankfully, I'm a homebody so being homebound most of the time isn't an issue for me.

Before all this happened, I had other things going on with me. I haven't worked for 2 years now due to the fact that I believe I have had some kind of brain thing that does not allow me to remember short term things and I was forgetting how to do my job. Long story short, I hired a disability attorney and got Disability the first time around. I just started receiving money this month. I also have balance problems and when I took a referral out of town to a Neuro doc, he looked at my brain MRI and his jaw about dropped. I am 54 years old and had no clue that I only had 1/3 of my brain due to a massive stroke, he thinks, when I was in the womb. I have always had problems....slight CP, can't see well enough to drive and balance problems but always seemed to get along. Now I can't think straight, and my focus is horrible. Then along comes this MC thing.

My Gastro NP wants to refer me to UCLA but I really don't want to do that. What's the point? Seems there is no real cure for this except controlling it with a modified diet. That brings me to why I'm here. I'm hoping that by reading your experiences, I can see what works and what doesn't. I have started to transition into a new way to eat.....no coffee, no chocolate and no wine....OOPS! Missed that one tonight. I know I'll pay dearly for that slip up but I can't pass up a deal on Petit Noir at TJ's.

In the meantime, some days are better than others. I am not on any digestive meds at the time but do take 120 mg of Cymbalta for Anxiety, Depression and Nerve Pain. If not anything else, Cymbalta has taken away the spasms in my middle back that I would get 3 times a year which would last about 2 months each episode. It's a great med for nerve pain.

So now I am the bacon eater for the bacon winner that brings home the bacon. I am playing housewife now but I can't bend from the waist down due to spasms in my lower back and weakness in my legs. I have someone come in every 3rd week to do the bathrooms and bendy work. It's been a hard year for me and I railed and railed but now am getting used to my new normal. When I go out, I usually use a four wheeled walker (a sporty model) and a 4 pronged cane for shorter jaunts. Thankfully Food 4 Less and Trader Joe's is across the street and down about 2 blocks. I manage to do most of the grocery shopping with my walker and bags looped over my handlebars. It's exhausting but at least I'm doing SOMETHING. I used to cook and bake all the time. Now meals are simple as I cannot focus or concentrate on a recipe.

So here's a start about me. Oh yeah, I used to write short stories but now my brain just isn't stable enough. I miss it.

Hope to learn lots here and be supportive as I am able. I kind of feel like I'm a fish out of water with the MC thing.

[jlbattin]

Welcome, Sandi!

I'm sorry you had to find us, but you'll find this will be your best resource. We've all become kind of like family here because we know we can come here and everyone will understand. So pull up a comfy chair and read everything on here. Also, Tex's book (upper right hand corner) is the only book written about MC and is a wonderful resource to read from cover to cover.

Along with dairy, what else have you cut out of your diet? Most of us live on a pretty restricted diet, and diet is the ONLY way to settle your symptoms and bring about healing. Most of us have cut out all gluten and dairy, and several of us have to not eat soy or egg either (along with a long list of other things).

Again, welcome, and please feel free to ask questions. We're all at different stages of the disease. I was diagnosed at the end of June last summer, and I feel like I'm almost normal again. But, I stick to my diet religiously! Let us know how we can help you!

[Marcia K]

Hi, Sandi. Welcome to our group and as Jari said, sorry you had to find us. I would second the recommendation for Tex's book. There is a listing in the back of what you shouldn't eat and I found it to be very helpful. I also had testing done by EnteroLab and that was a big help as well in determining what is safe for me to eat. We've all been in your shoes and this is a very isolating disease but you have friends here and you are not alone. Search the archives and you'll find a lot of helpful information. Don't hesitate to ask questions - someone will always step up to give you an answer as you try to find what works for you. Good luck to you on your journey.

[crervin]

Hi Sandi, again so sorry you've had to find this website. Tex's book will really help. After you've read it, you will have tons of questions, don't hesitate to ask!!

[tex]

Hello Sandi,

Welcome to our Internet family. As Jari, Marcia, and Martha have written, we are here for you and we will help in any way we can. Both celiac disease and MC very often cause neurological problems, including balance issues and memory and learning disabilities. Furthermore, the malabsorption problem associated with MC often causes deficiencies of vitamin D and the B vitamins. A deficiency of vitamin D weakens our immune system and can restrict our ability to recover from MC, and a deficiency of vitamin B-12 causes serious neurological problems for many of us. There is a very good chance that a vitamin B-12 deficiency is at least part of the reason why you are having memory and balance issues.

And of course as Jari and Marcia posted, certain diet changes are the key to healing our digestive system. As you have discovered, most physicians have a very limited and often incorrect understanding of the disease. There is a prescription combination of the active forms of vitamins B-6, B-9, and B-12 known as Metanx. It's often prescribed for diabetes patients who have peripheral neuropathy. I have been taking it for over 6 years now, and it has been very helpful for relieving the neurological problems that I developed as a result of years of untreated gluten sensitivity and MC.

Again, welcome aboard.

Tex

[brandy]

Hi Sandi,

Welcome! Most docs are not aware of the link between gluten sensitivity and neurological and memory issues. I suffered from ataxia also memory issues, brain fog, inability to do math equations (tough for my job) and difficulty in typing....transposed letters on keyboard. This was at age 50. All of this has resolved several years ago and I am back to normal. This forum literally saved my brain.

Two things helped me. The first was the OTC equivalent of the Metanx b vitamins that Tex mentioned above. After you have 5 posts I urge you to do a search and read the thread links on Metanx. The second was eating more fats in my diet....olive oil, coconut oil and avacados. When I eat too many starchy things and not enough fats for several days I start having to search for words again.

[Gabes-Apg]

Sandi
welcome to our group -
and emapthy that you got Dxd with MC and no help from medical professionals...

in line with Brandy's reply above
here are some of the posts/discussions on Metanx

http://www.perskyfarms.com/phpBB2/viewt ... ght=metanx
http://www.perskyfarms.com/phpBB2/viewt ... ght=metanx

Spend some time reading the posts aimed at new people, and the success stories area. This will give you an idea of some of the complexities of life with MC, and what others have done to 'get their lives back'

hope this helps.

[tex]

Here's another thread about Metanx that includes instructions on how to make up the same combination of the active forms of those 3 B vitamins by taking OTC vitamins:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=18500

Tex

[Mrs. Poopy Jeans]

Thank you so much for the warm welcome! I'm looking forward to reading all I can about this stinky and messy disease. I'm sure that since I am now totally disabled, I'll find plenty of time, between this and my personal Bible study, to really get a handle on this complicated mess. I believe I have found real hope here and look forward to being part of the community.