Hi everyone! Found out I have LC yesterday.

[Jcmmacdonald]

Hi all,

I'm very pleased to have come across such a supportive and educated community.
My GI called me yesterday and said that I have LC according to my biopsy resutls from my
colonoscopy three days earlier; I'm a 36 year old male.

So certainly I have a lot to learn. Interestingly, my wife is a Celiac...we
found that out in mid feb and she is beginning to feel much better since going GF. I have only been eating
when outside of our home....now having LC I'm planning to go completely GF. My Dr. Called in a script for Entocort (sp?) yesterday but it was going to cost $400 even with my insurance so I'm checking to see if there is another option.

Any recommendations on the best meds? Heard you can often get reduced cost on drugs from Costco so I might try that as well. Looking forward to getting to know everyone.


Thanks,
Jeff

Thanks,
Jeff[/i]

[mbeezie]

Welcome Jeff,

Sounds like you got a good head start. Many people here take Entocort and have had success - I didn't realize it was so expensive (I think I'd be calling my insurance company and complaining). Good for you for getting right on the GF diet. Many of us have multiple intolerances, including dairy and soy - others have even further restrictions. Many of us had testing for our intolerances done through Enterolab - I would recommend going that route - it speeds up the process a bit.

You have come to the right place. I am sure you will get your questions answered here - people on this site know far more about MC than the medical community.


Take care,

Mary Beth

[JLH]

Jeff, we're glad you found us. Interesting that your wife has CD.

I have LC as well and haven't taken any meds, yet. I've been GF over 1 year, soy free two months after that, and dairy free for decades.

[Jcmmacdonald]

Welcome Jeff,

Sounds like you got a good head start. Many people here take Entocort and have had success - I didn't realize it was so expensive (I think I'd be calling my insurance company and complaining). Good for you for getting right on the GF diet. Many of us have multiple intolerances, including dairy and soy - others have even further restrictions. Many of us had testing for our intolerances done through Enterolab - I would recommend going that route - it speeds up the process a bit.

You have come to the right place. I am sure you will get your questions answered here - people on this site know far more about MC than the medical community.


Take care,

Mary Beth

Hi Mary Beth,

Thanks for the welcome message. I'll look into testing through Enterolab as it would be great to speed up the recover process. My primary symptoms seems to be a bit outside of the norm. I suffer mainly from severe fatigue, dry mouth (tested neg. for sjogren's syndrome, but not sure my primary care ran the right test), painful joints and back or maybe kidney pain. I'm wondering if I might have some other Autoimmune...

Does anyone find a significant link between MC and other AI diseases?

Thanks,
Jeff

[Jcmmacdonald]

Jeff, we're glad you found us. Interesting that your wife has CD.

I have LC as well and haven't taken any meds, yet. I've been GF over 1 year, soy free two months after that, and dairy free for decades.

Hi Joan,

Thanks for the nice message. Is it typical for someone for LC to not take any meds and simply address through dietary changes?

I've always have GI related issues when I ate dairy but thought is was lactose intolerance/IBS. Most likely, I've been suffering from LC for a long time...guess there is no way to know.

Thanks,
Jeff

[Carole]

Jeff,
I'm a newbie too. Mine is MC diagnosed about 3 weeks ago. Like you, i've had symptoms for a long time but it was never diagnosed until now. Yes, i have autoimmune problems - i do have Sjogrens (tested positive by inner lip biopsy) with dry mouth but mostly dry eyes from it (had to have tear ducts cauterized in order to preserve what little amount of moisture my tear glands produce), i have had several bouts of iritis which i am currently battling yet again, and these are both secondary to Ankylosing Spondylitis - a type of rheumatoid arthritis that attacks primarily the spine and also some of the larger joints like shoulders. My MC manifested this time the end of May with severe diarrhea (8-12 times a day) for nearly 2 months before the diagnosis and starting on Entocort about 2 weeks ago. it stopped the D in just 3 days but i still can't eat much more than rice, chicken and some turkey and also white bread (i'm not glutten intolerant but i am dairy and soy intolerant). i keep trying to add foods but every time i stray i get cramps, gas, bloating and more frequent loose stools. i think you'll find this community to be this most helpful informative source of information you'll find anywhere - everyone seems genuinely interested in helping everyone else - and who knows better what we're going thru (not the drs, that's for sure!).
Good luck,
Carole

[tex]

Hi Jeff,

Welcome to our internet family. Sorry to hear that gluten is causing so many problems for both you and your wife.

To answer your question about other autoimmune issues, this poll should shed some light on that issue. Also, you can find many other polls that might be of interest to you in that forum:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=3715

Regarding your question about treatment methods, members here use three types of treatment programs:

1. Dietary changes
2. Medications
3. A combination of diet and meds

There are many of us here of us here in each category. The most effective "safe"medication, (according to our accumulated experience), is Entocort. It takes a while for the inflammation in the gut to heal, so many people who use the diet, also take Entocort, early on, in order to help suppress the symptoms, while their intestines are healing. (IOW, it takes a while before the diet can control the symptoms, and Entocort will improve one's quality of life, in the meantime.

Gluten can cross the blood/brain barrier, so it can cause all sorts of systemic, and neurological symptoms, such as extreme fatigue, backaches, muscle and joint aches and pains, migraines, malabsorption, and brain fog. Normally, those symptoms will slowly go away, as the gluten damage to the gut is healed. The brain fog will usually be the last symptom to disappear.

Regarding the cost, even the 5-ASA meds, (Asacol, Lialda, Colazal, Pentasa, etc.), are priced about the same as Entocort, but we have found that they are generally less effective. Apparently, your insurance company is only paying about half to two-thirds of the cost of Entocort.

Please feel free to ask anything that comes to mind, and again, welcome aboard.

Tex (Wayne)

[adelie]

Hi Jeff,

Have you looked to see if your insurance has a different price scale for a mail order pharmacy? On my BC/BS policy, they cover a percentage of the cost if I fill the prescription at a local pharmacy, but if I mail order through Medco, it's a flat $65 for 90-day supply. The insurance companies that have the special mail order benefit generally specify one mail order pharmacy, so you can't just go to any mail order pharmacy, but if they do provide that option, it can be quite the savings. In my experience, it can take up to two weeks to get the first prescription from mail order.

Also, ask if your doctor has some samples. When I first started on Entocort, I had to travel quite a bit and the insurance company doesn't cover any of the cost if you have to refill a prescription early. My GI at the time had quite a large reserve of samples that were within a couple of months of expiration, so he was able to get me through the travel time without having to pay the entire cost of the Entocort myself. If nothing else, a few samples can help ease the budget adjustment that comes with the treatment.

Karen

[ant]

Dear Jeff

Welcome aboard. I was dx LC last November having had D since August 2008. On your question of other symptoms I have had dry mouth and night sweats off and on since the age of about 25 (I am now 55) and fatigue since August 2008. Also some balance problems since age 45. After dx in November my GI doc put me on pepto bismal. It initially helped me about 80% of the time, but I was not on any diet restriction then and got a few flare ups - especially after Christmas

I am now on Entocort which I believe works better for me (although I have to combine it with a GF, DF, SF diet).

Sorry to hear your wife has CD, but at least you can join forces in avoiding the gluten poison.

Best ant.

[Gas Bag]

Hi Jeff, welcome.

I hope you guys have two bathrooms in your house.

I seem to be contolling my LC and the constant D I had for a month, last month, with probiotic yogurt.

Glad you found this forum, there are many people here that can give you good advice. Unfortunately I am not one of them.

Deb

[Bifcus16]

Hi Jeff, and Welcome.

I don't get digestive symptoms from gluten, but I do get arthritic type symptoms, sore joints, swelling hands etc. So you are not alone there.

Dairy on the other hand, causes all the GI symptoms you mention, including the classic watery diarrhea. I do much better if I avoid even trace amounts of casein (the protein in dairy) such as those products marked "may contain traces of gluten and milk"

I have never taken any meds to control my LC, so it is certainly possible to get better by diet alone.

Best wishes in finding your path to good health.

Lyn

[JLH]

Karen, I didn't see you sneak in here. Karen is my middle name.

[RUBYREDDOG]

Welcome Jeff,

I have been on Entocort about 4 months, after going GF,DF,SF for about 9 months first. I tried to find a generic drug for Entocort but never found one. Costco, Wallmart and other so called discount drug outlets did not carry it. I found a Canadian web site that was charging about $200 for 90 3mg pills. My insurance now covers it so I did not have to resort the other options.

I strongly encourage you to check out the information at www.enterolab.com Many of us here have had their testing done and found it to be a valuable source of information. The costs are $300 to $500 depending on the type and quantity of tests ordered. These are stool sample based tests and are far more accurate than other salvia or blood based tests for Gluten, Casein, Soy,etc. This cost is not usually covered by insurance. At least it was not covered by my insurance carrier.

Like anything, eliminating food categories from your diet is difficult at first. You have a distinct advantage with your wife having CD experience. Recovery (remission) takes a while to achieve. We all would like to get our lives back asap but for many, it takes several years to several months to accomplish our goals. Try to be patient and ask many questions. The good news is, you have found the best source of information for MC, right here.

Hoping you have a short road to remission.

Hotrod

[Jcmmacdonald]

Hi Everyone,

Thanks for all postings, I really appreciate all the insight and support.

I haven't really had the energy or focus to post an update...but here is where things stand.

My insurance company said they couldn't do anything about reducing the cost of Entocort and my pharmacy had the cheapest price at $700 and change. My insurance is new and has a deducible of $250 for prescription drugs. Never had that before....the joy of working for a small company I guess. Also, for branded meds the co-pay is $30 or 30% of the wholesale cost, whichever is higher. Gotta love our insurance companies. Given my poor health, I decided to pay out of pocket so could start the therapy without delay. So about $400 later, I'm now about 1 week into Entocort. I'll have my doc give me samples after this month (he gets it)...or try the mail order option because it will cost me $200 every month if I get it through the pharmacy.

Also, I'm doing my best to cut out gluten and diary. Is there a typical time line for someone to begin feeling better? Specifically to have increased energy, less joint pain, improved focus, etc? I know I need to be patient...truthfully, I'm feeling so hopeless. This feeling leads me to believe that I need to keep searching for other things that might be contributing to my symptoms. Based on my symptoms, I wondering if some type of infectious disease is possible. Like Lyme disease...

On a more positive note, I've received my lab kit from Entero. I'm starting with the Gluten Sensitivity Stool and Gene Panel Complete and will do the other test in the coming weeks. I'll let you know how it goes

Thanks,
Jeff

[tex]

Jeff,

Exactly the same thought crossed my mind, when I was reacting - that I had Lyme disease, or something equally sinister. I didn't see how I could possibly feel so badly, just from a little gluten intolerance. I felt like I had the mother of all flus, and it just kept relapsing, over, and over, and over. My neck was so sore and stiff, that I just knew that it had to be Lyme disease. The arthritis in my knees got so bad that I had to use two canes for a while, just to get around. One elbow, and the main joint of one of my little fingers, were so inflamed, that if I accidentally bumped them against something hard, it would sometimes bring tears to my eyes. A lot of days I had nausea. A lot of days I had uncontrollable diarrhea. I was almost always bloated, tired and exhausted. I rarely got a decent night's sleep, due to the aches, pains, and bloating. Sometimes at night I had fever, and the hallucinations kept me awake. All that slowly went away, though, on the diet.

Trust me, if you're faithful to the diet, you will get your life back. It will take a while, and you'll have to be very careful what you eat and drink, but you will recover, if you do your part. It typically takes several months to a year for the diet to bring remission. And, of course, you have to discover all your sensitivities, and eliminate them from your diet, in order for your gut to heal. That's where the Entocort comes in - it can help to bring remission much faster, and it can help to cover up little mistakes in your diet. Most members find that it starts providing some benefit within a few weeks, and almost always, within a couple of months, provided that you are not sensitive to the Entocort, itself.

You should begin to see some improvement, any day now. Thanks for the update, and good luck with your treatment. Please keep us updated, and don't hesitate to ask any questions that come to mind.

Tex