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darkangel

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About darkangel

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  1. But regarding the test I took at the allergist. Do you think it came back negative because I was on an almost complete free gluten diet? Or do you think eating a little here and there would still make it come up positive if I was positive?

    <{POST_SNAPBACK}>

    Ultimately, you've got to educate yourself, take responsibility for your health and LISTEN to your body. I spent a ton of money on the Elisa allergy/sensitivity test and showed I was only reactive to paprika and some obscure mold. C'mon.

    By all means, insist on the celiac blood tests. I had to ask my doctor for it. I've seen six different GIs and none of them tested me. Like you, I've been suffering off and on for years. I want some answers and I'm sure you do, too.

    I wouldn't advise going hog wild with the cookies and pizza... it's only going to make you sicker and more miserable. Heaven knows there are enough hidden sources of gluten, you can start cleaning up your diet and learning what it takes to be gluten-free while you're getting your tests done. And if you notice you're starting to feel better, you'll know you're on the right track.


  2. Not sure what number we're on now, but here are my suggestions:

    - Read the Mitford Years books by Jan Karon. Even at my sickest, I found these books so comforting and laugh-out-loud funny in spots.

    - Create a comfy bed. There's nothing more soothing than curling up on a soft bed with lots of pillows when you feel bad. I have soft T-shirt sheets for spring and summer; cozy flannel for fall and winter. Add electric blanket, home-made afghans... whatever says comfort to you.

    - Gentle exercise. Take a walk, if the weather's nice. Do some yoga or stretching. Helps keep things moving.

    - Drink plenty of fluids and eat your safest foods. Lots of fluids will help flush out toxins. Safe foods reassure you won't eat something to make the problem worse.

    -Spoon with your significant other. Nothing more comforting to me... and if your S.O. has warm hands, they can help relieve abdominal cramping.


  3. You all?  You all from the South?

    <{POST_SNAPBACK}>

    Naw, in the South we say "y'all." ;)

    I've certainly experienced the fatigue when eating a reactive food. I feel SO tired. Normal activity seems impossible. If I get still, I'll nod off. All I want to do is take a nap. It just about takes away my will to live... and I feel guilty because I'm not getting anything accomplished.

    When I'm having digestive symptoms, I get really depressed, weak and listless. There's this feeling of not being able to cope with even the smallest problems. I get upset easily and feel almost panicky. I think, "I can't deal with this right now." All I want to do is crawl into bed and pull the covers over my head.


  4. Checked out the gluten-free section of my local Drug Emporium last night. Found some new Cliff bars called "Nectar" that look to be gluten-free. I'm eating the lemon, vanilla and cashew version and it's good. Ingredients: Organic dates, organic roasted cashews, organic goji berries, organic lemon juice concentrate, organic vanilla.

    And it says, "We source ingredients which do not contain soy, wheat, gluten or dairy and are not genetically engineered."


  5. My gastrologist told me to eat whatever I want. More donuts, pizza, anything and not too worry so much.

    <{POST_SNAPBACK}>

    That's about the dumbest thing a doctor could say to you. I've had doctors and other well-meaning folks say the same to me. "You're so skinny! Why don't you just EAT?" You can eat a truckload of donuts and still be starving your body. You know the old saying, "You are what you eat?" It should actually be "You are what you DIGEST." If you have a problem with wheat - or any other food you react to - you can eat it, but your body won't be able to digest and absorb nutrients from it... so you're hungry. I've often experienced that hungry feeling - I call it my "kicked in the stomach" feeling. I think there's a blood sugar component to it, too.

    From what little I've read of your posts, it sounds like you don't want to give up the forbidden foods because you don't have a firm diagnosis yet. I understand how you feel, but you're going to continue to feel crappy until you identify what foods are bothering you and eliminate them from your diet, period.

    I'd suggest cutting your diet back to a few foods you know are safe and don't cause you any reactions. Do this for a few days until your symptoms clear. Then try new foods one at a time. I've found it helpful to keep a journal of what I eat and how I feel during the day. That allows you to go back and look for trends you may not notice otherwise.

    I've been through six different GIs and have found them all to be very unhelpful. If you don't feel like your doctor is meeting your needs, try someone else. They're all different and have different approaches. However, you may find - like I have - that you must rely on yourself. You must educate yourself and take responsibility for your own health.


  6. Eating brussels sprouts in the morning or any other time isn't good for someone with digestive issues. ... Brussel sprouts, broccoli and cauliflower are very harsh veggies and cause a lot of gas.

    <{POST_SNAPBACK}>

    I agree. I've found green beans and winter squash to be some of the gentlest veggies for digestive problems.

    You don't really say what your symptoms are, but you may want to take a look at the Specific Carbohydrate Diet. It goes beyond being gluten-free... it eliminates all grains. It is a strict grain-free, lactose-free, and sucrose-free dietary regimen.


  7. She got one tube okay but when she shoved the next tube in  she shoved the needle out the other side of the vein. Couldn't get any blood of course so she starts sweating and moving the needle back and forth sideways in my arm.

    <{POST_SNAPBACK}>

    Aauugh! :o

    Here's a funny one... I have a cousin - great big guy, Marine - who went to give blood one time and got this new girl who was very nervous. He talked to her in soothing tones and tried to encourage her. She stuck him... nothing. She apologized profusely, he reassured her. She tried again... nothing. He's smiling, telling her it's okay. She tries a third time... nothing. Pulls out the needle and he said blood started shooting everywhere. He claps a hand over it and she runs off crying in a panic. Supervisor has to come out, bandage him up and take the blood. He was laughing about the whole episode, but I sure wouldn't have been!


  8. Same here. Evidently, I have tiny veins that like to hide and roll. I don't mind the stick. The thing that gets me is once the needle is in, when they've missed the vein or it's not bleeding, they start rooting around. I get kinda cold all over and feel kinda sick. Once, I even told a tech I'd rather be stuck multiple times than to dig around with the needle.

    Oh! And here's another thing: When the nurse first took me back, she asked what the visit was about and I told her briefly about my struggles and that I suspected gluten and/or casein intolerance. She said - and I kid you not - "Well, those conditions are very rare." I thought I'd heard her wrong. I said, "No, I don't believe they're rare... just under-diagnosed."

    ** shakes head **


  9. Just got back from the doctor's office. They drew a bunch of blood to run lab tests for various vitamin deficiencies and - most importantly - to check for gluten antibodies. Now, I'm notoriously hard to bleed. I have one vein on my left arm that's always reliable. I told the lab tech... "Use this one here." So, she stuck the left arm in a different place. Nothing. After digging around a little - umm, yeah... that hurts - with the needle, she gives up, pulls out and tries the right arm. Dig, dig. Nothing. Pull out. "You're not feeling faint are you?" she asks.

    Again, I said, "This vein here on my left arm is the one my hematologist uses." So, she goes to the back of my right hand and tries that. It bleeds a little and stops. She pulls out and calls a supervisor. Once more, I say, "This one here on my left arm is the one to use." She tries it and lo and behold... it works. I walk out of the lab with four bandages. I proceed to the check out counter to pay. The lady says, "Wow, did they stick you that many times?"

    Hello? Is anyone home? :angry:


  10. And as for being put on an antibiotic just in case is ridiculous!! Guess what one of the side affects are of antibiotics - diarrhea!  Sheesh! 

    <{POST_SNAPBACK}>

    That's what I'm saying. Insane.

    I had a GP put me on Biaxin for a flu-like illness. And me with years history of IBS. Biaxin is one of the worst antibiotics you can give anyone with digestive issues. What are doctors thinking?

    I've been thru six different GIs and none of them have ever tested me for celiac disease. Go figure.


  11. If I wouldn't be eating some kind of meat at every meal, I'd be starving, too. I am also intolerant to all the other sources of protein, I can't have legumes (which includes peanuts), eggs or milk products at all, no grains of any kind (tried gluten-free brownies yesterday, because I wasn't sure about rice being a problem, and feel terrible today, diarrhea, bloating, achiness and fatigue).

    So, without meat I wouldn't be able to be on this diet, it is what gives me energy.

    <{POST_SNAPBACK}>

    I'm afraid I'm going to be in the same boat. When I started losing weight and muscle tone, I upped my whey protein isolate intake. When I got to the point I was in constant pain, it finally dawned on me that I might have a casein/dairy problem, so I eliminated it. I love peanut butter, nuts and nut butters, but I'm afraid they're going to be a problem for me, too, as I get allergic-type reactions when I eat them. Not sure about eggs.

    It's difficult to carry meat around as a portable snack. :unsure:


  12. Also, I've read (and it helps me) to try to get more than average protein.  The normal diet is about 50 grams/day, those with celiac disease should up that some - but you need to find out what is your optimum for your body.  :)

    <{POST_SNAPBACK}>

    Which brings up a question that's been on my mind. I don't want to hijack the thread, but isn't it tough to get lots of protein in your diet if you're avoiding gluten and casein? I weight train and this is a big issue for me. I don't know how I'm going to get enough protein just from meat and/or eggs.


  13. I just had a 2nd endoscopy (6 month follow-up).  Last time, my dr said that my intestines had atophied & were just really dysfunctional.  This time, he just said "Your celiac's is unresolved by your diet".  At which point, of course, I burst into tears.  They all looked confused that I would be so upset, but I feel like I put forth a lot of effort for naught.

    Anyway, the procedure was not that bad - I was totally asleep for the 2nd one.  The colonoscopy, on the other hand, was horrible b/c I had to fast for so long and drink that vile liquid laxative.  And that test showed nothing. 

    Argh.

    <{POST_SNAPBACK}>

    Doctors can be so insensitive. When I asked about dietary recommendations or lifestyle changes, my first GI told me, "You have ulcerative colitis. You'll never be well. You'll be on medication the rest of your life and may eventually have to have your colon removed to be 'cured.' Get over it." Then she wondered why I burst into tears.

    I'm feelin' ya on the colonoscopy. The first one I had was a nightmare. I was so inflamed and reactive, they couldn't get all the way around. They gave me maximum drugs. Afterwards, they asked me if I could remember any of it and I said, "I remember hearing someone screaming." Um... yeah... that would be me. Yet, my Mom says they gave me all kinds of post-procedure instrux and I sat and chatted with the doctor, but couldn't remember any of that when I got home.

    Thank God the next time they tried it a year or two later, they used a child-sized scope and managed to knock me out completely.


  14. I can remember having "nervous stomach" and complaining of "stomach aches" all through childhood.

    In high school, I'd come home from school exhausted and fall asleep while waiting for dinner.

    In college, I was diagnosed with IBS and TMJ and the two seemed to alternate back and forth. I ate tons of sugar and carbs because I was always too thin and felt I could eat whatever I wanted. I craved chocolate.

    I felt bad a lot... fatigued, bloated. In my junior year, I was dxed with mono and had to drop out for a semester. I was home-bound for about three months.

    Struggled with IBS off and on until I was upgraded to ulcerative colitis in 1999. Achieved remission about 2-3 years later with the help of dietary changes, supplements and probiotics. Got complacent and started eating a lot of grains and sugar again and am currently back in a flare.

    Current symptoms are:

    Yeast over growth in digestive tract

    Gas, rumbling

    Diarrhea, abdominal cramping

    Allergic reactions - runny nose, watery, itchy eyes

    Rash on my left foot and sometimes on my eyelids

    Brain fog

    Sharp joint pains off and on in my hips

    Fatigue

    Mood swings

    Menstrual problems

    Occasional headaches

    Rapid weight loss

    Dry skin

    Sinus congestion

    Very reactive to a variety of foods

    By far, my most troublesome symptoms are digestive.

    I've never been tested for gluten intolerance, but I plan to be tested for it and casein intolerance. I feel better when I don't eat grains or dairy and limit my sugar/carbs.


  15. And just because you could consume "forbidden" foods w/o ill effects doesn't mean damage was  being done.

    Good point.

    Actually, when my troubles first began, my first GI mentioned celiac disease and told me to try a "wheat-free" diet for a week. Of course, no one told me I couldn't eat oatmeal, etc. So, I tried it, didn't feel any better, and that was the end of that.

    Now, I suspect gluten intolerance AND possibly a casein intolerance. It just seems strange that out of six GIs I've seen, no one has tested me or given me enough information to truly understand that this might be my problem.


  16. I'm confused. I suffered with IBS and TMJ for several years before I was "upgraded" to a dx of ulcerative colitis. After changing my diet, taking probiotics and other supplements, I achieved remission for a couple of blissful years. Got complacent and let my diet slip. Symptoms have slowly come back and are getting steadily worse.

    I feel there's definitely a candida component, maybe food allergies - although nothing showed up on the expensive Elisa test. Now, I'm looking into a possible gluten and/or casein intolerance. I'm amazed with my years of struggling and working my way through six different GIs that no one ever tested me for gluten intolerance.

    I'm seeing a doctor now who worked with and was personal friends with Dr. Crook and specializes in candida-related issues. He put my on Nystatin and it's made me even sicker. I'm in the bathroom constantly and am rapidly losing weight.

    Because of the weight loss and because I weight train, I've been taking a whey protein isolate drink three or four times a day. It finally dawned on me yesterday if I have a casein sensitivity, this could really be making things worse. For the moment, I've stopped taking it and the Nystatin, trying to get some relief.

    What's odd to me is when I was in remission, I could consume a lot of "forbidden" foods, seemingly with no ill effects. Now, everything seems to make me sick. Has anyone else had these off and on types of reactions?