Newbie Here...

[MBombardier]

Hi! I didn't see any place specifically for newbies to introduce themselves, so I am doing that here. I hope that's okay.

Briefly, I had been dealing with chronic diarrhea for some months, but had been so busy that I had not done anything but speculate that maybe I was allergic to wheat. My GP and my gynecologist had both suggested I have a colonoscopy because I am past 50, but no one in my family has ever had colon cancer so I said no. Until a friend of mine died of colon cancer less than six weeks after she was diagnosed.

In my pre-colonoscopy appointment, the nurse asked if I was having any unusual symptoms, so I mentioned I was having trouble with chronic diarrhea, which apparently led the MD to take biopsies. It turns out that I had an adenoma, and collagenous colitis all through my colon. When I called the nurse to find out my biopsy results, this was so far off my radar screen that I had to ask how to spell it.

I have barely started (one month) trying to figure out this gluten-free/lactose-free thing. The MD gave me some mesalamine which did nothing except make me mean, even though the steroid is supposed to stay in the gut. I am angry because I feel like my body has let me down. Again. This is my third autoimmune disease. And I am angry because it is so stupid to be angry when so many others have so much worse health challenges to deal with than I do. And I am angry because I feel overwhelmed and it's hard to work up the enthusiasm to figure out what to do so I feel better and can get on with life.

I am so glad that I found this board where this stuff is not only a daily reality that people are living well with, but that shows that humor can be found even in the most embarrassing of issues.

[tex]

Hi Marliss,

Welcome to our internet family. We're sorry that you needed to find us, but glad that you did find us. Hopefully we can help you on your journey back to remission.

And I am angry because I feel overwhelmed and it's hard to work up the enthusiasm to figure out what to do so I feel better and can get on with life.

Actually, you're farther along than you realize, because with this disease, we tend to go through the 5 stages of grief, and you're already at the second stage, (anger). Most of us get stuck at the first stage, (denial), and we spend far too much time there, before deciding to come to grips with the problem, and get our life back.

Yes, it's true that there are worse diseases, but MC is vastly underrated by most medical professionals, who consider it to be a disease characterized by "a little diarrhea", with a benign course. In reality, MC is a life-altering disease, with many insidious satellite issues, for many of us. It can effectively chain us to our bathrooms, so that we're afraid to leave the house, due to the risk of "accidents". To say nothing of feeling as though a truck hit is, when we try to get out of bed in the morning.

The good news is, usually, if we meticulously avoid all the foods to which we are sensitive, once we get our MC symptoms under control, we find that most of our other autoimmune issues are either much improved, or gone altogether. As you probably know, autoimmune diseases tend to "lead to" other autoimmune issues. The common thread seems to be food sensitivities. Remission of symptoms won't reverse any permanent damage already in place, but it can stop further symptoms, (and further damage), from occurring, and best of all, it can prevent other autoimmune diseases from developing.

Incidentally, mesalamine is not a steroid - it's a generic form of the family of drugs based on 5-aminosalicylic acid, (5-ASA), which includes Asacol, Colazal, Pentasa, Lialda, etc. You might be thinking of Entocort EC, which is a corticosteroid designed to deliver most of the active ingredient, (budesonide), to the ileum and the colon. Typically, only 10 to 15% of it enters the blood stream, so it is much less likely to cause the side effects that the other steroids are notorious for. Most members here have had very good luck with Entocort, though a few are unable to use it, due to adverse reactions. Of course, most of the 5-ASA drugs are also "encapsulated", so that they do not become activated until they at least reach the duodenum, or further down the GI tract.

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

Tex (Wayne)

[mbeezie]

Welcome Marliss

It takes a bit of time to figure out the diet that will work for you. Most of us are gluten, dairy and soy free and others can't tolerate eggs, corn etc - really varies from person to person. There's plenty of good info on GF on the internet. I also found Jax Lowell's book The Gluten Free Bible to be very helpful in the early stages. Because you already have 3 AI diseases I am guessing you will find relief from a variety of symptoms from the GF diet. Many here have other AI diseases.

Take care and welcome aboard!

Mary Beth

[MBombardier]

Thank you for your responses! Although I know a number of people who are gluten-sensitive, I don't know anyone else with MC, or at least no one has told me about it. Not necessarily something one wants to advertise. :)

Tex, the medicine the MD gave me was Apriso, which is 5-ASA without the sulfa. Apparently it is a new drug? He's trying to get my insurance to approve it. He told me it was a steroid, but you know, sometimes people who are steeped in a subject forget that people new to it need more information to connect the dots. I like him--even though he's a FACG he doesn't think he's a god and is quite open to any alternative therapies his patients come up with.

Mary Beth, thank you for the book suggestion. I still have kids at home, and I am leaning more and more towards taking all of us gluten-free. The amount of information out there is stunning, and it helps to have a way to make sense of it all.

I don't know where in Texas y'all are (showing my southern roots), but my son and daughter-in-law, and her whole family live in DFW area. I will be down there in December to greet my first grandchild.

[mbeezie]

Hi Marliss,

I'm in Houston - not too close to DFW unfortunately.

My whole family got tested with Enterolab when I got sick and both my husband and son were gluten sensitive as well. We follow a GF/DF/SF diet plus each of us have a few more sensitivites. It takes some getting used to, but we have have had improvements in health from changing our diets. Even our dogs went GF and their health got better!

Mary Beth

[Joefnh]

Mary Beth, how did your dogs go GF??

Nestle has always had a skin rash sensitivity that the vitamins from nzymes.com has helped with

--Joe

[mbeezie]

Joe,

There are several options for gluten free with commerical dog food. I visited Dogtor Js site http://dogtorj.com/ and read what he had to say. We use Dick Van Patten's Lamb and Rice food and give GF treats. Our dog Missie had horribly itchy, stinky/oily skin when we got her and after going GF she is soft and doesn't itch or smell. Our other dog has an autoimmune disorder in his eye and it has never flared again since going GF. It's worth a try.

Mary Beth

[Kari]

Marliss - welcome to the PP family - glad you found this wonderfully supportive and informative forum, as did I not too long ago. Like with anything, it will take you some time to figure out and adjust to the new lifestyle involved in living with MC, but as you start to feel better, it will get a lot easier. I'm still in the process of ferreting out all my intolerances, but I already feel like a different person. The biggest bonus for me, besides much less D, is the increased energy level I have. Anyhow, just want to wish you the best of luck in finding your way to deal with MC. Keep reading on this board as it is filled with wisdom, wonderful advise and encouragement.


Mary Beth - so interesting about your dogs and gluten - good for you that you figured that one out. My son has agreed to be tested at Enterolab, and I have been debating which tests I should order for him. He does not need the gene panel, because I know he has at least one of the gluten sensitive genes from me (I have double). I thought of getting the gluten, dairy and yeast tests for now, and wondered what your thoughts are since you had your family members tested? Thanks in advance for your advise.

Kari

[tex]

Marliss,

Yes, Apriso is the newest 5-ASA medication to be approved by the FDA. I would guess that the reason why it has not been very effective for you is because it was specifically designed for treating UC. UC only affects the terminal colon, (the lower end), and it spreads upward from there, but rarely affects the entire colon, and never affects the small intestine. Consequently, Apriso uses a special delivery mechanism that insures that it does not become activated before it reaches the colon. No other drug for treating GI issues that I'm aware of, has such a restrictive delivery method. Most are activated at least by the time they reach the ileum, (the lower third of the small intestine).

Unfortunately, MC is more like Crohn's disease, and can affect any part of the GI tract. MC is typically concentrated in the proximal colon, and the distal ileum, (IOW, in the ascending colon, and the terminal ileum), and Apriso will not treat the inflammation in the ileum, and may be only marginally beneficial in the ascending colon. As a result, it may be available to only roughly half of the aggregated area of your colon and ileum that is inflamed with MC, and treating half of the inflammation is not likely to bring remission. Of course, technically, MC does not affect the small intestine, but unfortunately, the medical description of the disease is wrong, so this misleads most doctors into incorrectly believing that the disease can only affect the colon.

I can see how Apriso may be very effective for UC, but for MC, you would probably be better served with Colazal, Pentasa, or Lialda, if you want use a form of mesalazine. Asacol contains lactose, so many of us find that it only makes the symptoms worse.

I live about half way between Dallas and San Antonio, (IOW, about 125 miles south of DFW).

Tex

[mbeezie]

Kari,

I would test gluten and dairy for sure. The next logical one would be soy in my mind, then egg, and then yeast. You may not need to test everything. If you remove gluten and dairy you are doing good and then you can evaluate the others. I am reactive to soy but my son is not. I don't cook it or but he does get soy in some products I don't eat. My family also eats yeast and I avoid that as well.

How old are your children? My son was 9 when he started GF/DF. He's compliant for now and I hope he will continue to be so as a teenager.

Mary Beth

[Kari]

Hi Mary Beth,

Thanks for your quick response. I only have one child - my son, who just turned 39 - he has blessed me with 3 grandchildren, so he has made up for being an only child:). Anyhow, I'm thinking that if he tests positive at Enterolab, the whole family might consider a diet change. I'm also thinking of having the kids tested (8, 6.5 and 5 years old) depending on my son's results. The reason I wanted to add yeast to the gluten and dairy tests is that I tested positive for it, so I'll probably do those 3 for now. I agree that gluten and dairy are most important. It has taken some convincing for him to do the test, since he does not have any digestive symptoms of gluten intolerance at this point in time. However, he has problems with his thyroid, which was the first autoimmune type issue I experienced (I'm hypothyroid).

Kari

[tex]

Kari,

If the tests for gluten and casein are both negative, then there is a good chance that the other tests would also be negative. You might ask Enterolab how long they keep the samples these days, and if either of those tests are positive, then your son might want to test for other sensitivities, as well. . . . just a thought for possibly keeping the cost down.

Tex

[MBombardier]

Tex, this is wonderful information, thank you!! I guess my next question would be... do I even need medication? What does it do for me besides lessen the D?

Mary Beth, the kids I still have at home are girls 15 and 12. I think the 12yo would profit the most from going GF as she had severe behavior issues as a toddler until I took her off additives, artificial colors, and sugar. She is very well-behaved now, but she struggles badly with distraction. We homeschool, so I've had to learn to watch for/compensate for this.

I know that as well as the gluten and the lactose, I am also sensitive to soy. I haven't eaten that in a long time. Heaven forbid that I am sensitive to eggs...!

Thanks for all the welcomes! :)

[Kari]

That's a great point, Tex - I think I'll do the initial test for just gluten and dairy. If they keep his "sample" for a couple of weeks, that will allow time to determine whether to test further. Thanks for the suggestion, it might save some $$ ..... Kari

P.S. Once I find out how long they keep the "samples", I'll post it here for general info.

[tex]

Marliss,

If you can avoid all your food sensitivities, no, you probably don't need meds. The main benefit of them is to help to bring remission faster, so that you don't have to deal with the D while your intestines have time to heal from the diet. The amount of time required for healing depends on how much damage has accrued. If the damage is extensive, it can take 6 months to a year to reach remission by diet alone, but of course, there will usually be some improvement, sooner than that. Entocort, for example, will often bring significant improvement in BMs, within a week or two, but it still seems to take just as long for the gut to heal, with or without the meds. We are all different in the details, and the time required, though.

Tex