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I too am a newbie to this board, but just know these folks KNOW WHAT THEY'RE TALKING ABOUT!
I am newly diagnosed with MC and my first appt with GI is next friday. I have been on entocort for 3 weeks today, and I'm sorta starting to feel a little better. I have shopped for some gf items with Dee's guidance. I have not been tested for gf or anything, but may soon do that.
there are days where I've had D all day, which means that having a bathroom close is imperative! I work full time, and have some pretty cool bosses that know I'm dealing with this, but when you have to get up in the middle of a meeting, it's embarrising as they know why I am doing that! also, I think they only have so much patience for just so long with a sick person, know what I mean?
I too am married and my husband has been pretty supportive for the most part, but he keeps asking me "are you better or normal now?" I have brain fog with this disease, and it does effect my thinking and focus. I sometimes can't get out of bed from being tired and depressed.
Are you on any meds now? my sister has fibromyalgia, and she swears I have it too. At first with this, I thought maybe I have Crohn's disease. but after my colonoscopy, diagnosed with the MC. also, my colon is twisted which they told me during the test. I will be discussing this on friday with the GI.
It's weird cuz I have bouts with D and also C and lately have had some strange mucus...trying to figure it out!
I am soooo grateful for this site and feel very lucky to have found it very soon after being diagnosed! I can't imagine going thru this alone for so long as you have without the support that is needed.
Please know that we're here for you, and hopefully you will feel better soon. good luck and keep us posted!
Welcome aboard. I go by the name "Luce" on this board -- cute, eh?
I got the most benefit out of going off gluten which is all I went off of in the very beginning. This was the part that put a major stop to the body pain fairly quickly, in my case, in addition to slowing the diarrhea down alot. Also, the migraines stopped for the most part, unless I accidently got into some MSG or nitrates or something, which has been very rare since the end of 2003 when all this dieting business started. The fatigue's going away was a much more gradual thing -- took about 6 months from the time I started removing the gluten.
In my case, removing the other "foods" one at a time until I'd gotten all the ones you see to the left of this message simply stopped what was left of the already much lessened diarrhea, and gradually, back to normal stools. I verified this with Enterolab, but the results matched my own observations along the way. (As soon as I'd sent another specimen in, I'd removed the next food I was to be tested for.)
However, some people may be almost as sensitive to some of the other foods that are common problems here, so if you don't notice a huge difference in how you feel right away, besides the fact that you're probably still getting some "hidden gluten" as you are early on the learning curve, it just may be that you are highly sensitive to something else.
Let's just hope that you see results right away once you've removed the obvious sources of gluten to get you started -- like bread and other baked goods as well as battered foods that use wheat flour, usually.
I was lucky in that that was my case, so in three days, even though still exhausted after decades of this mess, I was soooo motivated from the obvious response to gf dieting (what I understood then), that I put it into high gear and eliminated every possible minute source of this stuff. Of course, I had a zillion questions to ask the members of our original group before we moved to this wonderful site. They were so inspiring! I just love these folks!
Another option, if you want to have some face to face support would be to visit a celiac group in your area. Use the term "gluten sensitive," rather than "celiac" if you find that you are sensitive to it (most of us are) or some may not understand why you are there. These groups can be sooo supportive and many of their meetings concern how to go about feeding yourself! Ha! This is especially good UNTIL you MIGHT have to remove something else. They aren't much help there, but the folks with M.C. here can help, not only with the gluten issue, but also, with the other foods.
For me, it was soo emotional just seeing other people who started out feeling the way I did, and now, they were able to do the same things that normal people did with the same energy and success in life. It just gives ya hope, and the first visit with another "celiac" is such an emotional release.
A few may even also have M.C.
I can identify with your feelings about finding other people online who've gone through what you've gone through. I hid my disease and tried to work and act "normal" for so many years that one day I just couldn't keep up the act. I could fool anyone into thinking all was well with the world, even try to act energetic. When I got to the point that I couldn't finish fairly easy, but absolutely necessary tasks, people couldn't understand why I couldn't "just do it." It was because I'd built up a fascade of feeling well when I didn't until it just didn't work anymore.
This is just my theory on this, but I think, at least in my case, the fact that I had no "proven" reason for the way I felt, like say a well known diagnosis, of, say, cancer or heart disease, etc., that I somehow couldn't justify my own "not doing" whatever I was "supposed" to be doing.
On the other hand, I didn't get diagnosed earlier because I was so afraid of having a cancer diagnosis, etc.
Also, I hadn't been able to connect all the numerous other symptoms from other systems of my body that I somehow didn't think could be related. I was somewhat afraid of going to a rheumotologist for fear of having to go through too many tests and be put on too many heavy duty medications. I was in denial, in other words. In actuality, the M.C. diagnosis was the best thing that could've happened to me as it led me to find the early members of this group. I never had a need for a rheumy after that, and on the gf diet, I've not needed any medications.
Unfortunately, I lost my complete thyroid right before my M.C. diagnosis, and the gall bladder before that.
I'd had huge tumor on an ovary that caused me to have much of my female innards removed about a decade before the gall bladder, at age 40. I don't really think this is all that uncommon a scenario.
One little hint that could save you a bundle is to not go out and overstock on all the commercial gf foods out there. Instead, go for uninjected meats and frozen vegetables (overcook at first, or just drink the water that the vegetables are cooked in for your family until you can tolerate a little of the soft vegetables.
Check the package of the vegetables in the ingredients section to make sure there are no surprises. Should just state the name of the vegetables, maybe salt, and that's about it for now. I would, however, avoid frozen potatoes in any form for now as they are often floured with wheat flour to keep them from sticking together. Some brands are safer, but right now, I recommend just buying potatoes the way they come out of the ground.
If you tolerate rice at all, I found that I did pretty well with Uncle Ben's boiling bags -- the white rice seemed pretty gentle on my gut. They are so easy to do, and when you are short on energy, that's a plus! I think these say they are fortified, but some of the other fortified rices are fortified with things that are gluten, so watch it. I really should've called Uncle Ben's to make sure it's ok, but back then, I could tell if I ingested the tiniest amounts of it. However, these companies are constantly changing how they do things, so it's a good idea to verify everything right at first, especially. Otherwise, you might not think the diet is working. I would call them if you want to try their rice. Some stores have the bags with smaller nos of servings if that would be helpful to you to find those, say if you are going to be fixing something for just you til you learn more tricks to making things everyone will enjoy. Remember, potatoes, other than sweet potatoes (due to the large amount of fiber for now) are one of the least problematic for pretty much all of the gf people with M.C. I've met here or anywhere, so if the rice doesn't agree with you, stick with various kinds of potatoes for a while, and try again when you are better.
Then, once you feel like trying something else, you might try a gf corn tortilla (some aren't gf, particularly at restaurants, even though they are sold as "corn tortillas"). A popular brand that is often gf is Mission tortillas. If their corn products are gf, it will usually say so on the package. If not, give 'em a call.
Reason I'm mentioning all these foods is that they are more or less bread substitutes which can help to give you that full feeling right at first when you are withdrawing from bread. However, corn is a little more difficult to digest, even if your gut is normal, and we do have a small minority of folks who also are sensitive to corn.
If fatigue is a problem, you may want to have your doc check you for B-12 deficiency, and by all means, check your Vit D levels. If you have malabsorption, there may be some other nutrients your doc may want to check. If your B-12 level is below 400, even though the ref low end might be 200 on the lab slip, I strongly recommend buying a bottle of Biochem's sublingual B-12/folate tablets to get your level back up above 400. I got mine to sort of mid-way between 400 and the upper end of what's considered the normal range on the lab slip. That reduced some of the neurological symptoms my endocrinologist discovered, and it also put some wind back into my sails.
These are just some things I thought might be helpful to you to get off to a good start without spending a bunch of money or making it into something too complicated. Eventually, you'll find it an adventure figuring out how to add more variety in your diet. It's so much fun finding so many foods to eat that aren't part of the typical American diet. I now have more variety in my meals than I would ever have had if I'd not had this condition. Now, if I can find a good chef someplace that knows how to cook for me, the food doesn't taste as good as I can prepare at home. Never thought I'd be saying that, that's for sure!!
I rarely do anything that's all that complicated, but if you're a good cook already, you are way ahead of where I started! Ha! At any rate, your creative juices are going to be fired up very shortly. Bon appetite!
By the way, your husband can have all the bread he wants, and you don't have to mention that you aren't eating any of it. He won't notice the food is gluten free if it looks like regular food. After a while, it won't bother you at all that you aren't eating it. You'll probably be glad that you aren't eating it! Haha! Contamination is a little more difficult, particularly when it comes to the butter knife spreading bread crumbs on the butter -- watch out for that while you still haven't eliminated dairy.
Speaking of that, you might want to just do the lactose free dairy products til your casein testing comes back as most of us are lactose intolerant whether or not we're casein intolerant. If you are lactose intolerant, you'll get that reaction, followed by the casein reaction later, so leaving out the lactose will make things less confusing. If you are fairly young, you are liable to heal enough to lose the inability to digest lactose, but if we are in pretty bad condition or we are just old, the lactose problem may continue. If you turn out to be casein sensitive, the lactose issue becomes a moot point -- ya just leave all dairy out of your diet after that test comes back positive.
Didn't mean to write a book, just got on a role. I think you'd do well to visit a support group, and try to find someone you can talk to in person. Sometimes these groups will provide someone with experience to help you learn where to shop, and even go with you. Our support group president has even been the national group's president in the past, and she personally goes shopping to help people make selections of products. Again, don't over do on the gf processed stuff, just pick out something recommended, and try it if it's similar to something you've always eaten. Reason for not overstocking is because, inevitably, when more sensitivites show up, most of that stock will contain the next food sensitivity, and you'll end up throwing all that expensive food out. Besides, some of it tastes awful! It can be a good crutch right at first when one is feeling deprived.
