Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
My best friend from high school has been battling Crohn's disease for at least 10 years. It began after the birth of her 2nd or 3rd child. She says she's done mesalamine and lots of prednisone over the years. Strangely, no Entocort. For about 5 years she was getting monthly Remicade infusions and they were working great. But this year she developed joint pains and they diagnosed her with Lupus. They've said she can never take Remicade again, BUT, they will not affirm that this is DRUG-INDUCED Lupus. Instead, her doctors claim autoimmune diseases usually come in pairs, so there is no reason to blame the Remicade. WHATT??
She says she tried a GF diet a few years ago and didn't notice any improvement. Now she is trying a DF diet (along with occasional prednisone) and is doing fine GI wise (but the joint pain is bad). In fact, her most recent colonoscopy showed the least amount of inflammation since her disease began. So I've urged her to try DF and GF together, and explained she may not have seen improvement while GF because the dairy was still in her diet. Suggesting soy free too might have sent her over the edge...
I wish I could afford to buy her Enterolab testing. She claims she's trying everything, but I wonder how one can do that without addressing the major food intolerances. Seeing her struggles makes me worry about those of us with autoimmune disease. When will the other shoe drop?? I read a statistic the other day that autoimmune diseases combined are the third leading cause of death. I believe it.
I hope my diet changes are serving as a preventive measure to avoid that outcome, but I'm scared anyway. I guess it's time for me to schedule my long overdue doctors appointment for bloodwork. With any luck, my other autoantibodies will have dropped (they didn't after 1 month GF/DF/SF), and I won't soon gain another label besides the MC.
I have no doubt that you're right about gluten being the primary source if her joint pain, (and probably her autoimmune issues). It's a crying shame that it's so difficult to convince so many people that they have to avoid all of their food sensitivities, in order to resolve autoimmune issues. I really don't understand it, because when I was so sick, I would have been willing to give up anything, if someone had only suggested it.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sizzle that's awful your friend has Crohns first of all, and that she will not try the dietary approach is a shame. Certainly from personal experience diet plays a BIG role in Crohns disease. I have noted a significant reduction in pain when I avoid any problem foods.
If your friend would like to talk with me about this let me know I would be more than glad to help out here
Regarding remicade and drug induced lupus the simplest test is to stop the remicade for at least 8 weeks to see if the lupus blood markers resolve. In drug induced cases like that the symptoms and blood markers will resolve once the medication has been stopped for a while.
You are correct though autoimmune conditions like tragedies tend to come in groups.
One of the teachers at my school has Crohn's disease and is the person who referred me to my GI doctor. He's had a biscection and feels a lot better.
After I found this website, I asked him if our GI gave him any dietary recommendations. He looked at me in a puzzled way and said no, he could eat anything he wants. I was incredulous, but realized that our GI didn't recommend any dietary changes for me, why would he for other intestinal diseases? What a shame.
Gloria
You never know what you can do until you have to do it.
It is really sad to see someone you know suffer and refuse to make the dietary changes needed to feel better. My stepmom has celiac disease and has been diagnosed with fibromyalgia. She also suffers from major depression. So far, she has flat out refused to cut gluten out of her diet. She is well aware of the risks, but has stated that she does not want to live forever.
Unfortunately, when I went gluten-free, it seemed to put a strain on our relationship. I could not longer buy into her excuse that it was just too difficult. I worry as well, because she is at least 75 pounds overweight and her unhealthy eating habits affect my dad who is diabetic because of Agent Orange.
I have realized that I can't do anything to help the situation. My little sister (technically half) has finally started to apply some pressure and seems to be getting somewhere, at least for now.
I can only hope she will continue and see that she does feel better. I know my dad will do whatever it takes.
I just don't understand why anyone who is feeling THAT bad (be it Crohn's, Celiac, MC or any other disease) wouldn't try dietary restrictions/changes. At least for a trial period to see if there was any validity to the theory that what we eat has a direct effect on our intestinal health, and ultimately our overall health. It just makes sense on a very basic level.
Kelly
Believe deep down in your heart that you are destined to do great things~ Joe Paterno
I'm scared, too. I am confident that removing food offenders from the diet can stop further damage from accumulating, but wonder how much disruption has already been done, in which body systems, and how/when that might manifest itself down the road - that other shoe dropping, as you said. So many variables - genetics, age, exposure to various pathogens throughout our lives, medications we may have taken, and the timing of all those and more.
My heart goes out to your friend, and to you. It didn't sound to me as though you were saying she's flat-out resistant to diet restrictions, as much as overwhelmed. She must be feeling quite the double whammy. I think I would tolerate any restriction rather than risk serious health decline and misery... but I am already persuaded. I think if I didn't feel any better, I might be shakier about adding further restrictions without knowing for sure. But there is no such thing as "for sure."
Mags, I remember your stepmother's story. I don't want to live forever, either, but I do want to avoid whatever pointless suffering I can, and to live as strong as I can for whatever the duration turns out to be. Terrible that you approaching your own health would serve as a wedge between you - and I hope your half-sister is taking care of her own health... I can imagine trading some (hopefully temporary) health for an amazing experience (tired the day after staying up too late and having one extra glass of champagne, in Paris?, with fireworks?). But trading lifelong health for pasta? Not so much.
At some level, I'm not entirely sorry to have had the alarm bell raised so loud and clear. I have always been interested in healthy nutrition, but it's very hard to figure out what that means on a practical level. MC sure knocked the dithering right out of me.
Sara wrote:MC sure knocked the dithering right out of me.
Great use of that word! I can't recall ever being able to work it into a conversation. You have a superb command of the English language.
Incidentally, I'm a bit disappointed that no one wants to love forever, (though I do love Sarah Brightman's version of "Who Wants to Live Forever"). I can remember when the transistor, (and soon thereafter, the first transistor radio), was invented, 63 years ago, and look what that has led to, so far. I can't wait to see the technology that the next 40 or 50 years will bring.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
You're clearly not a world-class ditherer, or I'm sure you'd have had occasion to use that word a lot more often!
Don't get me wrong - I want to live a long, healthy, joyful life, and am a big fan of the future. I think it's good that you're disappointed that we are all so accepting of being mortal - that's maybe a little response to the dawning realities of MC, and I wouldn't want to take an approach that shuts down too much exciting possibility. So I'm willing to lighten up on the fearfulness I expressed in my previous, in light of your inspiration here. I sure hope I don't have mysterious AI symptoms or syndromes coming at me, but since we can't know what's coming in any case, I'm all for lots of it ;)
Visit the Microscopic Colitis Foundation Website
You have a superb command of the English language.