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About darkangel

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  1. Healthy oils - Udo's, fish, olive and flax, peanut butter, nut butters, avacado are all excellent non-dairy suggestions for your diet. I would also recommend a protein supplement and/or meal replacement powder mixed with water or juice. A whey protein isolate, soy or egg white protein are lactose-free.

    I would also highly encourage you to start a regular weight training program, if you're not already doing so. A good strength training program, coupled with good sources of protein and healthy fats, will help you gain lean muscle mass and is key to healthy weight gain.

    I went from around 90 pounds at my sickest to a personal best of 119. No one asks me if I'm anorexic any more. Squats and lunges will build up your glutes and reduce your discomfort while sitting.

  2. I've just about quit eating out for the time being and when I do, I don't do fast food. Even the stuff I cook at home, I keep simple, with few ingredients and stuff I KNOW is not a problem for me. It's an adjustment, but I think you'd be better off to play it ultra safe while you're in this highly reactive state.

    If you do eat out and you order something like that salad and it comes out wrong, send it back. You need to be polite but very clear with your server that your food must be uncontaminated... they can't just pluck off the croutons or onion ring and send it back out to you... that it will make you very ill. No restaurant wants a lawsuit on their hands.

    And I agree with the previous poster: always carry some gluten-free snack items in your purse or car so you're never caught with that desperate, hungry feeling that makes you take chances.

  3. I'm sure your doctor - and any other assisting technicians - would appreciate personal cleanliness and grooming but are unconcerned about makeup and hairstyles.

    I find the whole thing pretty invasive and humiliating. I had a flex sig done with no anesthesia of any kind and was really traumatized by it. Hard to explain, but I felt violated... almost like I'd been raped. I sat in my doc's office after the procedure and just boo-hooed while he was trying to talk to me. He looked at me like I'd lost my mind. These procedures are so common place to them, they never give any of these things that concern us a thought.

  4. Is it possible for the villi to heal with dairy still in the diet? As you might understand taking milk out would be a huge step for me and one I most wish to avoid if at all possible.

    Anything you ingest that you're unable to properly digest and assimilate does harm. Undigested food particles feed the bad bacteria in your gut and can trigger food reactions and make leaky gut worse.

    Have you tried dairy alternatives like rice or soy milk?

  5. I had the ELISA test done and found it to be a waste of money for me personally. I know from experience I have reactions to gluten, dairy, peanuts, etc. The results of this expensive test showed I only reacted to paprika and some obscure mold I'd never heard of. My doctor seemed to be baffled be the results, too.


    It's not what most folks want to hear, but I think your best bet is an elimination diet and keeping a careful food journal. You might also be interested in experimenting with the pulse test method to determine food reactions. Seems to be pretty accurate and it's free.


  6. So what exactly is this SCD diet (food wise) and regement?

    And what is a good (tasty) easy recipe for yogurt?

    The Specific Carbohydrate Diet is a grain-free, starch-free diet. Carbohydrates are limited to simple carbs that can be easily digested and absorbed by an impaired digestive system. Examples of allowed carbs are fruits, honey and non-starchy vegetables. All grains are strictly forbidden - including rice and corn. So, basically, it's an even stricter form of gluten-free diet. You can learn more about it here:


    And here's a link to the SCDiet homemade yogurt that is lactose-free:


    These directions are for use with a yogurt maker. The book, Breaking the Vicious Cycle, also gives instructions for making it without a yogurt maker. You can actually make a batch by the heat from the appliance light bulb in your oven. That's how I did mine.

  7. The only slightly negative thing I've ever come across in my research is IF your gut is in really bad shape and inflamed, probiotics could cause further irritation. I think this applies more to folks suffering from Crohn's and ulcerative colitis, though.

    IMHO, probiotic supplementation is essential for most of us who have digestive issues, particularly if you've had courses of broad spectrum antibiotics, have taken antibiotics for long periods of time for acne, are on birth control pills, have eaten a starchy/sugary diet. All of these things disturb natural gut ecology.

    I prefer to get mine in the form of a pure, powdered supplement I mix with water. I have issues with dairy and can't tolerate any kind of yogurt - even the homemade kind on the Specific Carbohydrate Diet, which is lactose-free. Many storebought varieties do not have enough viable live strains to do any good, AND you've got the issue of possible gluten or unwanted sugar.

  8. Any other osteopenia recommendations? I knew this was a distinct possibility w/ celiac, but it's still disconcerting since I'm in my early 30s.

    Osteopenia here, too. Cause thought to be two or three rounds of Prednisone.

    Following the diet and doing whatever you can to improve your digestion and/or heal leaky gut will help. Also extremely important: weight bearing exercise. A serious weight training program along with regular walking has my bone density improving. And that's without calcium/D supplementation. Not saying you shouldn't supplement, but just to point out the weight bearing exercise plays a key role.

  9. That's why I was thinking about trying storebought yoghurt and using lactaid. Maybe, for now, I should just take probiotics as pills.

    I'd strongly urge you to take a probiotic supplement. Most store-bought yoghurt brands don't have reliable live bacteria count and a sensitive digestion just does better avoiding dairy whenever possible, IMHO.

    I started Asacol on Monday and so far it's making things worse, but I've heard that it can take a while for your system to adjust to it so I'll give it some time.

    I've heard alot of folks don't get relief or actually feel worse on Asacol. I've heard several reports of increased bleeding. The older drug sulfasalazine (Azulfadine) is highly preferred. I was on Asacol for ages with no improvement. I asked my doc to switch me to sulfasalazine after reading the recommendation from Elaine, the author of the SCDiet we're discussing above. Check out this discusssion: http://www.scdiet.org/4faq/asacol.html I did much better on the older med.


    Asacol is owned by Procter and Gamble. They've got megabucks to promote it with slick fliers, quarterly newsletters and a glitzy, interactive Web site. If there are 500,000 UC sufferers in the US alone, it's in their best interest to get gastros to prescribe this stuff and keep their patients on it for life. Don't be sucked in.


  10. Off-topic question - is your avatar a picture of you? 'Cuz if so... kick ass!!!

    I wish. That's the fabulous Ms. Jada Pinkett-Smith - Will Smith's wife - actress and kickass rock musician.

    On-topic, thanks for the Custom Probiotics recommendation - I'm looking for some traveling probiotics :) And their office is right near mine, go figure! I'll have to check and see if they have a company store.

    I also don't think celiacs can be 'cured' with the SCD, I wonder if it's some hold-over from the first edition when a lot less was known about Celiac. But it sure does seem to speed up the healing, at least that part's still true!

    Harry, the owner is a great guy. I have no idea about walk-in type orders. I've always ordered by phone or from his Web site. He's a fellow sufferer who developed these special formulations for himself first and has meticulously tested their viability.

    Yeah, I dunno. From everything I've ever heard, celiac is a life-long genetic thing. I was surprised to see that when I was rereading my copy of BTVC the other day.

  11. Traces of bright red blood and narrow stools could indicate hemmorhoids, but you should also be feeling quite a bit of pain and tenderness in the anal area, if so. The crampy, nauseated feeling can't be explained by 'rhoids. Consistent bleeding is definitely cause to see your gastro doc asap. In fact, considering he's going to be out for a month, I'd insist on an appointment with another gastro in his practice, if possible.

    I have a great book with various diets to address certain symptoms. There's a suggested diet to help stop intestinal bleeding. If you're interested, I can give you the highlights.

  12. You're not alone. There are alot of folks that are struggling with illness, juggling a lot of seemingly unrelated distressing symptoms and looking for answers. You've come to a good place to get support.

    I can understand how you feel about doctors, but I think finding a compassionate, knowledgeable gastro doc will go a long way towards helping you get to the source of your problems and take control of your life again. I strongly urge you to find someone who'll work with you. If you feel this first gastro - or your other doctor for that matter - isn't listening to you, isn't taking time to thoroughly explore your history and symptoms, isn't treating you in such a way to get results, you NEED to find one who will.

    I'd also suggest you use your times of insomnia to explore the Internet and educate yourself on digestive diseases. See what descriptions sound like they match your situation. Learn about all types of therapies: traditional drugs and well as alternative therapies. Experiment with dietary changes. What you eat plays a HUGE part in your body's health or lack thereof. The book Optimal Digestion is a great resource I've found that covers the gamut on digestive health. You can find it on www.amazon .com. I'm a firm believer the active, informed patient gets results.

  13. Well, I eat pretty much 95 percent gluten and dairy free already... hence my concern about the blood tests giving a false negative. My doc said something about the different types of antibodies and talked like one of them would show accurate results even though I haven't been regularly consuming gluten.

    I was diagnosed with IBS in the early 80s and "upgraded" to ulcerative colitis in '99. I'm able to pretty much maintain remission through diet, fish oils, etc. But this latest episode is atypical for UC. The pain came on suddenly, was very localized to the right and down slightly from my navel - not in the colon area, and seemed to be precipitated by a restaurant meal that included several things I know I shouldn't eat: gluten, dairy, chocolate and sugar.

    My GP thought I had appendicitis, but a CT showed the appendix was normal, but the ascending colon was abnormal with thickening of the walls. Past UC-type inflammation was always on the opposite side and, from my understanding, it's very unusual to have the right side affected in isolation. So, all these oddities finally made my doc feel he could order the full gamut of blood tests and be able to defend them to the insurance company.

  14. Please do give more info! i'm doctor stupid...well, clearly cause i pick winners! lol but yes, more info babe!

    The doctors I mentioned are noted for being particularly good diagnosing gastrointestinal disorders, are cutting edge on the latest medical knowledge, don't rely overly on drug therapy to simply cover up symptoms, but use positive, alternative approaches - seeking to reestablish the body's natural balance and ability to heal. Here's more info on each:

    Dr. Leo Galland

    Foundation for Integrative Medicine

    New York, NY. (212) 772-3077

    Author of Power Healing and Four Pillars of Healing


    Dr. Ronald Greenberg

    Department of Medicine / Gastroenterology / Clinical Practice

    Long Island Jewish Medical Center

    270-05 76th Ave New Hyde Park, NY 11040

    tel: (718) 470-7280

    Specializes in IBD

    Dr. Ronald Hoffman

    776 Sixth Avenue, Suite 4B

    New York, New York 10001



    The Hoffman Center focuses on internal medicine with the appropriate amalgamation of high-tech conventional medicine along with effective natural therapies. Dr. Hoffman is a nutritionist and a graduate of the Albert Einstein College of Medicine with training in internal medicine.

    Author of 7 Weeks to a Settled Stomach

  15. The symptoms you describe sound like what I call "brain fog." That is mentioned other places on the forum if you do a search. It is pretty common for lyme disease too.

    It's also very common for candidiasis. A candida overgrowth in the gut can happen whether or not you're celiac. Contributing factors are multiple courses of broad spectrum antibiotics, poor diet, high sugar/starch consumption and stress. The OP may want to check out the online candida quiz:


  16. I'd be a member of that group.

    From what I've read, there are alot of digestive disorders - particularly those that involve frequent diarrhea - that can damage the intestinal villi, making digestion of gluten (among other things) difficult. There's a spectrum of sensitivity to gluten not just a black/white celiac or non-celiac diagnosis. That's what makes this so difficult for those of us that are suffering and looking for answers, IMHO.

  17. According to the book, celiacs respond and heal much faster on the SCD than Crohn's or UC sufferers. Elaine says a year on the diet for most celiacs and then they're able to return gradually to eating "normal," although I find that hard to believe.

    Lots of folks swear by the SCD homemade yogurt, but I was never able to tolerate it. Tried everything... even making it with goat's milk. Instead, I take a high quality six strain probiotic blend from Custom Probiotics. It's pricey, but potent. Other probiotics I tried seemed to have no effect.


  18. I can sympathize. I got a negative on blood tests, too. I had to beg for him to even do the blood test and the doctor I was seeing at the time didn't tell me which test(s) he did or what the numbers were... just said it was negative and dismissed the whole matter.

    I have an appointment today with my GI. I think he's going to want to do a colonoscopy, but I'm going to ask if he can do a biopsy to test for celiac. I don't know why I have to ASK a doctor to test me... you'd think they'd want to rule out or confirm a celiac dx.