New member- diagnosed MC 2 months ago

[Woodsygal]

Hi all! My name is Jenn and I'm a 35 year old Philadelphian.
I've suffered from GI and belly issues my whole life. I had my gallbladder out in 2010 and they have gotten worse since then. Since July, I've been in the ER 3 times, had colonoscopy, catscan, genetic blood testing, and every other test known to man. I see a colitis specialist on Tuesday.

I'm currently a month GF and am on:
Prednisone down to 17.5 mg
Pentasa 2000 mg
Dehydrated tincture of opium 1 ml
Vicodin 5mg

I was out for 8 weeks on short term disability and returned to work Tuesday. Only to wake up sick and in pain wed and called out sick thurs and today.
Tested negative for Celiac, crohns etc. considering doing the gluten testing at enterolab.

Really just wanted to introduce myself. This seems like a great forum with a lot of really smart people!!

Jenn "woodsygal"

[Polly]

Hi Jenn and

Love your name! I am a woodsygal myself and try to spend some time in the woods each day. It keeps me sane.

WOW - you have really been in a rough patch! I agree that a good place to start is enterolab testing. If you have been reading here, you already know that the gluten sensitivity most of us have is not picked up by the standard blood tests for celiac. But the enterolab stool test will pick it (and other food sensitivities) up.

I hate to rain on your parade, LOL, but don't expect too much from the colitis specialist you will be seeing. Most GI docs are truly clueless about the food connection to MC and the fact that non-celiac gluten sensitivity is a huge issue for many (and more debilitating often than plain old celiac). But I hope I'm wrong - once in a blue moon one of us discovers a doc who is on the right track.

For most of us, diet becomes the key to remission. You have already eliminated gluten, which is a great start. Have you noticed any difference yet? It can takes months, BTW, for the gut to heal. Because other food sensitivities are so common, you might want to try eliminating dairy and soy too. The paleo diet is helpful for many of us - it forbids all grains, dairy, soy, legumes, etc.

Looking forward to further chats!

Hugs,

Polly

[Deb]

Welcome, Jenn. You will find a wonderful amount of support and information here. Read as many of the posts that you can. Collectively, there is
an amazing amount of information posted here. If you want to really jumpstart your learning, our forum moderator, Tex, has just written a book. There's a link to it at the top of the page. Best wishes for better health and healing. Deb

[Martha]

Welcome, Jenn.

I used to live in the Philadelphia area--King of Prussia.

This forum is a great place to get information and encouragement. Just hearing other people's experiences and what they have done and are doing to control MC is such a help.

Love,
Martha

[maestraz]

Welcome, Jenn, I am a transplanted Philly area girl--I grew up in Delaware County.
I know you'll find a lot to think about on this site. I am a year and a half out from my LC diagnosis, and have seen great improvement as a result of advice here and, luckily for me, a GI doc who DOES get the gluten issue. You truly can ask anything on this board and know you'll get quick, informative responses.

[cjbndtsn]

Hi Jenn,
I'm to new to give advice but I've learned more here than in my 50+ years of life. I've had great success from listening to these folks and reading all the other input and topics.
Hang in there

Cathy

[Zizzle]

Welcome Jenn!

I was also diagnosed at age 35. Sorry you are in so much pain. Hoepfully you'll get the pain under control and you can start concentrating on diet to reduce the D.

[tex]

Hi Jenn,

Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they actually have it. Here, we all understand.

If prednisone isn't completely controlling your symptoms, you clearly have other food sensitivities in addition to gluten, (as Polly has already suggested).

Again, welcome aboard, and I hope you'll soon be feeling much better.

Tex

[Woodsygal]

Wow! Thanks for the super warm welcome and all the responses. So nice!!

My husband read some of the responses with me, and he is determined to get me to try the Paleo diet now, Polly. I know that I am very lucky to have a great man who is interested in helping me - but we started reading about that diet and wow. Sounds intimidating. I thought going gluten free was hard! That was a cake walk compared to Paleo!


I have noticed a difference in the gluten free diet, and it's only been a month. I feel "lighter". I don't have the D anymore- just the inflammation of the colon and the PAIN. I'm pretty sure though that the D is gone from the Dehydrated Tincture. (I'll be switching to paregoric next week).
Tuesday night I accidentally had a sip of my husbands beer - I thought it was my vitamin water- I immediately spit it out into the sink. Wed morning I woke up- headache, nausea, and my regular pain was super intense. It's friday night and it's definitely gotten better, but I am no where near 100%

I'm definitely doing the testing. I think I am going to do the test for gluten/dairy/soy. I figure if I am spending the money anyway, I might as well find out as much as possible. I know what you mean Polly about having expectations for the colitis specialist. I've already begun to see how little the GI community knows about the diets affect on MC...and frankly how little they know about it in general. I feel like every time I've seen my GI doctor in the past month (which is probably 4 times, no lie) he has some other idea of what to try and I am thinking to myself WHY didn't you try this before?? When I was hospitalized last month overnight, the whole GI team didn't know what to do with me. They ended up putting me on hyoscyamine and sending me home. Apparently that is a medication for IBS.

Martha and maestraz- glad to have some fellow Philly people on the board, even if you are elsewhere now! Martha, my in-laws live in King of Prussia. We go to the mall all the time. I actually got married in Phoenixville!

Thanks again for the welcome. I'm going to go explore the boards now!

[ant]

Dear Jenn,

Welcome from Hong Kong! Great you have supportive husband..... Support from husbands, wives, boyfriends, girlfriends, family or just good friends is all vital as we deal with this life changing disease. And that is also why this support group is so great.

Best wishes on your journey to remission, ant

P.S. The diet restrictions are difficult, but actually Paleo can be very tasty.
P.P.S. I found a good substitute for a refreshing beer is cider.

[Polly]

Hi again Jenn!

That's great that hubby is so supportive. Mine is too, and it has made this path so much easier.

Actually, paleo is easier in some ways than GF. For one, you don't have to spend lots of time reading labels! For another, a lot of us react negatively to ingredients used as substitutes in gluten-free offerings - like guar gum, xanthan gum, other grains like sorghum, quinoa, etc. Finally, paleo foods are all fresh and freshly prepared - no commercial foods in boxes or bags that contain colorings, preservatives, and other offenders.

You do lose some convenience with paleo - have to plan ahead to have safe foods on hand and have to change your idea of what "breakfast" or "snack" entails. For example, breakfast might be a leftover chicken breast and some veggies from the night before. Snacks might be a hardboiled egg, olives, another chicken breast, a baked sweet potato, etc. I hope you don't have a big sweet tooth - there are almost no traditional desserts allowed - usually it's a piece of fruit. It takes a while to get used to, but the benefits are worth it. Just cutting all of that sugar out is major, especially now that sugar is being implicated in heart disease rather than fat.

I think the best intro to paleo is Loren Cordain's book on the paleo diet. I love the fact that he includes over 400 scientific studies proving that this is probably the healthiest diet and the way that humans are supposed to eat. The great minds here have come up with some interesting paleo "convenience" foods - like our famous paleo muffin recipe thread in Dee's Kitchen. Also, there is a new bread called CarbZero (google Julian bakery in CA) which has two paleo versions - made with either almond flour or coconut flour. Other than dessert, bread is what most people miss when eating paleo, I think. Eating paleo can be more expensive, especially if you opt for organic/free range, but I figure there is nothing more important to spend my money on than my health.

Glad to hear you've already made some progress with GF. And best wishes on your journey to health. You WILL get there!

Hugs,

Polly

P.S. Karen, one of the first Potty People (PP) to go directly to the paleo diet, had a saying: "Always carry a pork chop in your purse". LOL!

[Stanz]

Just wanted to welcome you and congratulate you on your decisions thus far and also for marrying a supportive guy. The Enterolab testing was the first thing I did once I found this Forum. It made the diet changes so much easier to do once I actually KNEW what I was reacting to. My oldest D eats a mostly Paleo diet and it works for her.

Connie

[Leah]

Welcome to our family Jenn. It sounds like you and your husband are determined to get the answers you need to lick this thing. Great! I was Dx 7-8 months ago and am now off of all steriods and only go to the bathroom once a day! If Paleo is too intimidating for now, taking out gluten, dairy, and soy is a good place to start. These are the top "offenders" when it comes to inflammation. The Enterolab tests will answer a lot of questions for you. I had to do it the long way with an elimination diet, but found that I can eat rice and corn products with no ill effect.

What I have found to be true on this forum is that we are all different. But we also have many commonalities. When our guts are inflamed, many of us need to take all RAW fruits and Veggies ( including salad), citrus, tomato and it's products, beans.... etc.... out of our diet until we are more healed. Once our guts feel better, then you can add one thing back in at a time. That's basically how I did it. I started out with mostly meats, eggs, cooked veggies, rice and it's products, applesauce, and canned peaches, and almond butter. After about three months, I was able to add some back in. I love my salads :)

Anyway, let us know how you are doing on your journey to feeling better.
Leah

[Woodsygal]

thought I would start off with an emoticon Update. lolz. I haven't lost my sense of humor YET!

Ok let me start with an update from yesterday and respond and then I will tell you what's happened since then. Once my husband and I read about Paleo, we got the book by Loren Cordain. My husbands name IS LOREN so he was pretty excited. He wanted to do it with me and we went full steam ahead with me complaining the whole time. Last night for dinner we had organic steak on the grill and steamed veggies - mushrooms, carrotts, peppers, broccoli and green onion. For lunch I had a salad, but I did use (gluten free) non paleo dressing. Breakfast was steamed crab meat with asparagus. (ALL organic from whole foods)

by an hour after dinner I still had pain but not too bad. Loren went to bed at 10:30 and I just didn't feel tired so I stayed up. Then as I was laying on the couch something happened. It's happened before, but not in the past 8 plus weeks that I have been dealing with MC. Restless leg syndrome. And it was BAD. I wouldn't call it painful, I would call it irritating, frustrating and annoying. I couldn't lay down and it lasted until 3 am. Finally I laid on my heating pad and somehow fell asleep. This morning I woke up....BAD abdominal pain (as usual) and the D IS BACK. Even on the dehydrated tinciture of opium and the valium. The restless leg syndrome has continued into today and my joints feel swollen as well. I feel it in my arms too.

I am beside myself. I was having pain but the D had been gone and I was even able to get up and around, walk my dog and clean. Now I am back to being practically bedridden except when my legs get bad and I have to get up (or lay there kicking them like a maniac).

Called GI dr, they know nothing of my meds having this as a side effect. Has anyone experienced this?

I'm going back to just applesauce, rice and maybe some GF bread for now. All I have had today is water and applesauce so far. No appetite.

Colitis specialist- tomorrow at 11am. I am SO nervous and frankly scared...if this woman tells me she won't refill my meds, or has no idea what to do with me, I may spend the appointment crying. At least my husband is going to be there with me, and I will bring my list of questions!

Sorry for rant...but...HELP my new family! My friends don't understand and they are fading away....one of them isn't even speaking to me as she is fixated on me taking narcotics and thinks I am some sort of drug addict now. My "filled out face" is one of the reasons she thinks this yet I am on PREDNISONE. (she has a masters in math so she is no dummy,)

I feel like I am losing all my friends because I can't go out to eat anywhere, and I can't drink. No one seems interested in a sober game of rummy (particularly if I ask if we play in my bathroom ....)

[cjbndtsn]

I know that pain of the friends......I've lost several friends during my ordeal because they don't understand WHY I can't go out either. But the true friends are the ones that are going GF with me and come by the house to visit. Some of the others wouldn't even come by the house. You'll know who your true friends are .....just stay true to yourself because your health is more important than the friends that are only there for going out to dinner!!!! A good card game is fun and we have turned to jigsaw puzzles as well. I've done more in the last 4 months than I have in my life.....lol. THis family of potty people will be here for you....they are the greatest.