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About darkangel

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  1. I would think there'd be several gluten-free alternatives to the butter cookies. Pamela's makes a good shortbread.

    Brown sugar cinnamon Pop-Tarts. I'm sorry, but it's hard to beat that combination of warm, crispy crust and sugary sweetness.

    Since I'm gluten-free/CF, I also majorly miss Reese's peanut butter cups, tiramisu, custard-filled eclairs and my Mom's home-made apple pie with Crisco flaky crust.

  2. I have this problem with ANY grains and starches. If I stick to a grain-free diet (plus dairy/soy free for me too, since I'm intolerant to them), then my stomach is fine. Fruit, meat, fish, veggies, nuts and seeds. That's all I eat and I feel fantastic. Anytime I stray (gluten free bread, rice, potato) I get abdominal distention, acne, stomach trouble, lethargy... just not worth it. If I eat caveman style I can eat as much as I like and maintain a healthy weight (114 lbs, 5' 4") plus have loads of energy. :) However, one iota of gluten, dairy, soy, yeast, grains or starches (phew!) and the belly is back.

    Burdee, your story could be mine, and we're the same height! Are you my secret twin? :lol:

    Make that triplets. I think this fits me, too. When I was sticking to a very strict no-grain, no dairy diet, my abs were wonderfully flat and well developed due to my workouts. After so many years of looking like a pregnant refugee, I was elated. Even planned to get my belly button pierced to celebrate.

    Because I was feeling so well, I gradually started eating a lot of sugary, carby crap again and am now back where I started. I'm hoping to get back to that flat belly by bikini season.

    P.S. I'm 5'3" and currently about 115.

  3. My brain fog involves not being able to concentrate. I find myself unwilling to read long passages of text - and I love to read - feels kinda like ADHD... I can't stay focused. But the biggest mental thing that bugs me is short-term memory loss. I struggle to remember something that happened or something I said a day or two ago. And I blank out on the names of people I know well. It's frustrating and scary at the same time.

  4. I also got "everything's normal" result on my celiac blood tests. My doctor told me he didn't know what else to do for me. Gotta love that.

    Through trial and error, research and education, I've figured out that both gluten and casein (dairy protein) are problems for me. I'm working on figuring out what other food sensitivities I may have.

    I've decided getting an official diagnosis is somewhat overrated. For years, I had "irritable bowel syndrome." Docs gave me antispasmodics and anti-anxiety meds to mask the symptoms, but no one ever tried to get to the cause. Eventually, I was diagnosed with "ulcerative colitis." Again, I was given medication and told there was nothing I could do but wait until I got sick enough to have my colon removed.

    I've had to struggle to find my own answers. A gluten and dairy free diet works for me. Any time I start to doubt it, all I have to do is eat a little of either and my body will be happy to remind me.

  5. I'm sorry if my responses have seemed abrupt. I know this is a confusing and stressful time for you. When you're sick, it's hard to process all this information and cook things from scratch and worry about every bite you put in your mouth. It's a struggle and most of us don't have anyone at home to take care of us and cook special foods. Doctors aren't much help and often make matters worse.

    It's wonderful to have a supportive community like this one where you can ask questions and share experiences. Sounds like you're starting to get a handle on things. Hope you're feeling a lot better soon.

  6. I had the ELISA tests run and it said I didn't react to anything but paprika and some obscure mold. :blink: Yet, I know from listening to my body I have very strong reactions to gluten and casein. It's frustrating, but I've found the tests aren't helpful for me. I never understood why, but I found this quote...

    The only way to be absolutely sure of the diagnosis is to follow a program of elimination and provocation. Blood and skin testing may sometimes help, but they are expensive and are not reliable to diagnose delayed-onset food allergies or chemical sensitivities. Although some such tests are marketed by clinics and laboratories, I have found the rate of false positive and false negative results to approach 50%. Even with testing, it is still necessary to eliminate all (or most of) the offending foods for 30 days or more to confirm the results. Then to provoke symptoms by adding them back. It would be nice if there were an easier method. But I have not found one.


    I've also been told that a large percentage of folks that have problems with gluten also have problems with casein.

  7. So sorry to hear about your son... bless his heart!

    As severe and debilitating as his symptoms are, I'd definitely try him on a gluten AND casein free diet - regardless of what the nurse says. It took eliminating both to make me feel dramatically better.

    I've had experience with the Specific Carbohydrate Diet. It is totally gluten free... even completely grain free. However, one of the important parts of this diet is the home-made yogurt with its good flora. The yogurt is very helpful for a lot of folks on this diet, but it's definitely something you'll want to avoid with your son. I even tried making mine with goat milk, as some of the folks on the listserve suggested and I still couldn't tolerate it. Instead, your son can take a probiotic supplement and get the same benefits without the casein. I highly recommend Custom Probiotics' six strain blend.


    The Web site for the diet is http://www.scdiet.org. The book can be ordered online or found in your local bookstore. You can sign up for the listserve and talk to the folks there about your son's symptoms. The author herself was on the list at one time, but she's elderly and I don't know if she's still active or not.

  8. I ate lunch before going to see him and while waiting in the waiting area, my left arm suddenly started hurting/aching and my left hand started to tingle. I told him this and I think this may have been his majore deciding factor to do some more testing. Has anyone had this happen before? It kind of freaked me out :unsure: I also got very nauseated too.

    Not to frighten you, but pain and numbness or tingling in the left arm can be a sign of heart problems. Nausea, too.

    Some heart attacks are sudden and intense — the "movie heart attack," where no one doubts what's happening. But most heart attacks start slowly, with mild pain or discomfort. Often people affected aren't sure what's wrong and wait too long before getting help. Here are signs that can mean a heart attack is happening:

    - Chest discomfort. Most heart attacks involve discomfort in the center of the chest that lasts more than a few minutes, or that goes away and comes back. It can feel like uncomfortable pressure, squeezing, fullness or pain.

    - Discomfort in other areas of the upper body. Symptoms can include pain or discomfort in one or both arms, the back, neck, jaw or stomach.

    - Shortness of breath. May occur with or without chest discomfort.

    - Other signs: These may include breaking out in a cold sweat, nausea or lightheadedness

    As with men, women's most common heart attack symptom is chest pain or discomfort. But women are somewhat more likely than men to experience some of the other common symptoms, particularly shortness of breath, nausea/vomiting, and back or jaw pain.

    Source: http://www.americanheart.org

    It may be nothing, but it's sure worth checking out. What did the doctor say when you told him about it?

  9. i canceled my xmas dinner party with the celiac group here in rockford as i felt that because he had changed my diagnoses to crohns that it was a bit hipercriticule to go when i am not sure its celiac.

    Crohn's and and celiac are not so different. The intestinal villi are damaged in Crohn's in much the same manner as celiac disease. A gluten-free diet is going to help you, regardless of your diagnosis. There are a lot of folks here - myself included - that don't have official celiac diagnoses, but we feel better on a gluten-free diet. I've found everyone here to be very supportive and I'm sure the group in Rockford is the same.

  10. But my question is, how exactly do you do that? How do you know what food is bothering you, especially since sensitivities are delayed? It seems so hard and confusing.........has anyone done it successfully by themselves and have any advice on how to start?

    The False Fat Diet book I recommended to you tells you how in very simple terms. If I remember correctly, it offers three different levels of "difficulty" so you can ease into it, if you need to.

    There are many other books out there on elimination and rotation diets, food allergies, food sensitivities. Here's one called Food Allergies and Sensitivities. I haven't read it, but it's gotten rave reviews.

    http://www.amazon .com/gp/product/089281875...=books&v=glance

    Your local library can be a good source of info without having to buy alot of books. There's also plenty of info in the Internet. Here are a few links...






  11. A gluten-free - better yet a GRAIN-FREE diet - is commonly very effective in treating Crohn's. Check out www.scdiet.org for plenty of testimonies to this fact. So, you're likely to feel better on a gluten-free diet, regardless of whether you have Crohn's or celiac disease - or both.

    With that said, I'm confused. I've never heard of Crohn's or celiac disease being diagnosed with a CT scan. Have you had an endoscopy or colonoscopy?

  12. Abdominal bloating immediately after you eat - or even before you finish eating - is a sign of dysbiosis... a lack of good bacteria in your gut and an overgrowth of bad. I've seen it explained best this way:

    If you can say that you have gas and/or bloating and/or burping and/or stomach

    discomfort (any or all of these symptoms) occurring within 30-45 minutes after beginning

    a meal and, in some people, before they leave the table, you have an anaerobic

    bacterial problem that must be resolved. These organisms live on sugar, not oxygen. Any time you eat something other than an animal product, a fat, oil or butter, meaning that you would be eating carbohydrates that all break down into sugar, these organisms love you and repay you for your kindness feeding them with discomfort, burping, pain, gas and bloating.

    Dysbiosis happens when we take broad spectrum antibiotics which kill off the good as well as the bad bacteria. Other things that contribute: diet high in carbs and sugar, birth control pills, alcohol consumption, and - of course - eating substances the body can't properly digest - like gluten. The key is getting the body back in balance... killing off the bad bugs and reestablishing the good flora. Check out http://www.drdahlman.com/ where I found the above quote and some good information about getting things under control again.

  13. I have to agree with Claire. I did the ELISA test - paid out of my own pocket - and it was useless to me. It basically showed I wasn't sensitive to anything I'd been eating. My blood test for celiac disease came back normal, after which my doc told me he didn't know what else to do for me. I've seen a lot of different doctors... six GIs, an integrative GP, a doctor who specializes in treating candida. None of them have really helped me and some have done much more harm than good.

    An elimination diet would probably be the best route for you now. If you can find someone to guide you through it, that's great, but I think it's difficult to find someone like that. I have yet to find anyone in my area. You can do it yourself. It's not fun and it's not easy, but it will give you the answers you're seeking.

    As strange as it may sound, I recommend you read "The False Fat Diet" by Elson Haas. Don't let the title fool you. This book is an eye opener about food reactions and sensitivities. Dr. Haas gives you a list of the most common offenders - dairy, wheat, corn, sugar, eggs, soy, peanuts, tree nuts - and tells you how to do elimination diets of varying levels of difficulty.

    http://www.amazon .com/gp/product/034543711...=books&v=glance

    Once you've eliminated the foods that are bothering you - and at first there may be many of them - your gut will have a chance to heal, improving your digestion and allowing you to eventually add forbidden foods back in. You've discovered a gluten sensitivity - regardless of your test results - and are already feeling better. The next step is to find out what else is bothering you. This process is going to take some time and the healing of your gut is going to take some time. Keep your eye on the little improvements you're making every day. Keep a food diary to track what you're eating and your reaction to it. You'll start to see the patterns.

    You may also want to check out "The Pulse Test." I wish I'd known about this book before I spent a ton of money on ELISA. The concept is deceptively simple... your body reacts to allergens by increasing your pulse rate. The book tells you how to determine your normal resting pulse rate and how to test different foods for reactions by tracking changes in your pulse.

    http://www.amazon .com/gp/product/094263794...glance&n=283155

  14. I was diagnosed with irritable bowel syndrome in college, then "upgraded" to a dx of ulcerative colitis in my mid 20s. The first GI I saw (I've worked my way through six so far) mentioned celiac disease to me as a possibility. She advised me to avoid wheat for a week or two and see how I felt. Of course, I didn't feel any different, so she told me I didn't have celiac disease.

    As others have said, you must be on gluten if you want reliable test results. However, if you do decide to go gluten-free after your tests, you must be aware it's much more than just avoiding wheat. Use this site to educate yourself on all the sources of gluten and the hidden, unexpected places it lurks. Also, be aware your problem could be more than just gluten. Dairy is another primary offender and some folks with UC and Crohn's have problems with all grains.

    My personal "gut feeling" is my problems are all related. I was told IBS and UC were two separate conditions and that I now have both. I say BS. IBS is your body trying to tell you something. When you don't get to the bottom of the problem and your doctor simply attempts to suppress the symptoms with antispasmodics and antianxiety meds, your symptoms worsen and you're diagnosed with UC, Crohn's or celiac disease.

    I recently found a site for a doctor who's had a lot of success treating both IBS and inflammatory bowel diseases. Check it out at http://www.drdahlman.com/

    With a UC diagnosis, you may also want to look into the Specific Carbohydrate Diet, which is not only gluten free, but completely grain free. http://www.scdiet.org/

    I'd also highly recommend you try Custom Probiotics. I've tried numerous probiotics and saw little or no improvement. I even tried Primal Defense and, after an initial improvement, it made me very ill. In retrospect, I believe it was because it contains wheatgrass, but that's another subject. Anyway, of everything I've tried, Custom Probiotics' six strain blend is the only one that was effective. I give it most of the credit for the two-three years of "remission" I enjoyed after about five years of being deathly ill. The owner is a biologist/chemist who himself suffered from candida overgrowth. I've found him to be extremely helpful. http://www.customprobiotics.com/

    I'm sorry this is such a long post, but I want to encourage you to do the research and take control of your health. All the GIs I've seen have told me I have a chronic disease, I would never be well again and there was nothing I could do but take my meds like a good little girl and wait for the day I'd need to have my colon removed, at which point I'd be "cured." When I regained glowing good health, on my own, none of them ever questioned my success or took any interest in what I was doing.

    So, don't let anyone discourage you. The answers are out there. Feel free to email me if you want to talk... angela_grace@lycos.com.