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gailc

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About gailc

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  • Gender
    Female
  • Interests
    quilting, woodworking, computer programming

    mainly quilting
  • Location
    southwest

  1. Same for me HOORAY, except when I get dosed.

    I used to wake up more tired than when i went to bed, then as the day went on I'd feel better then tired around 8 and second wind around 9 then stay up until about 3.

    Now i get tired around bed time and then REALLY tired and fall asleep right away. SWometimes I get tired earlier wake up about 7 hours later to discover I'd missed dinner.

    I guess that's ok

    I feel good when I wake up now


  2. Colonoscopy 3 days ago. I just did the ducolax and miralax prep a few days ago. Essentially 21 doses of laxative. this was the alternative to salt. If there was salt in either I could not taste it.

    Miralax in Gator ade, tasted like jello. I tasted Miralax powder and there was no taste. Ducolax was a coated pill.

    I weigh the same now as before so I guess no salt. I can put on 5 pounds with one salty sandwich, and it stays on. This is why I wouldn't do the normal prep.

    I modified the prep though, I went fiber free a day and a half earlier than they said to and I went liquid diet a day and a half earlier than they said to. And took a couple laxatives early. Watch out for ducolax though , after taking an extra one early I found it said no dairy so I assume that was wasted. I assume it was an enteric medicine, disolves in non-acid environment the ice cream probably negated that.

    Well, I was already cleaned out--very gently- before I started the prep which amazed me.

    I'll find out when I see the doctor if I did a good job. I only had extremely mild cramps and wondered if it was working at all for a while, then it was bathroom every 5 minutes. I had construction workmen here and I'm sure they laughed a little.

    If it was good then that is what I will do next time.

    6 biopsies for Celiac just below the stomach and 1 polyp I can feel where the polyp was removed at my left hip, one side effect of the gluten free diet for me is I now feel the insides of my intestines. I could never feel that before. Feels like water sloshing around when I am 'extremely' gluten free. I just learned my bacon had gluten also Altoids just this morning.


  3. I tried for two weeks to eat gluten for the tests and gave up. Mostly mental, I could deal with the symptoms coming back, but mentally I could not cope with the damage I was doing to my body.

    "FIRST, DO NO HARM" came to mind and I asked through a nurse if a gi doctor would convince me to continue eating gluten for the tests, and convince me it would be good for me then I would TRY. The answer was 'if you know it is bad for you , then don't eat it"

    I am all for your decision, and I regret my 2 weeks of trying to eat gluten.

    Everyone asks if I want to cheat, HUH, what?? The thought never entered my mind.


  4. " In other words about 30% of people with active celiac disease test negative no matter how much gltuen they ingest. "

    ------------------------

    I certainly believe you but I am going back to the doctor in a few days and I want to ask you where you found the 30% number. Do you have a reference?Since I wasn't allowed to speak with a doctor only a nurse practioner who stated the test (biopsy) would be accurate even though I had been gluten free for 4 months????

    She also said Celiacs have diahreah, rather nastily under her breath, not so only 35% have diahreah according to my research.

    I had biopsies yesterday, even though I tried to talk them out of the biopsies because I KNOW I was healed almost immediately on the diet and I'd heard 2 weeks gluten free voids the biopsies, he took the biopsies anyway.

    I want to be able to say "about my blood tests-- 30% false negative " with more than saying I read it on the internet. Did Dr. Green's book say that? I returned it to the library and I don't remember.

    By the way, all you folks out there getting colonoscopies, before you have them do it, ask them if they remove the air afterwards my previous GI doctor did remove the air. I spent all morning with the procedure and all afternoon and part of the evening in the ER(more $$$) with the side effects of leaving all that air in there. The pressure from the air gave me heart attack symptoms, they gave me ekgs, xrays, blood tests and I cannot remember if there were more things, and about to give me morphine and other drugs when this sweet young nurse came in and said 'this is your lucky day, I used to work in GI" Showed me how to quickly get rid of the air, I said hold off on the morphine and the rest then until I see if this helps(except I took the potassium) I wound up not needing the drugs.

    As far as I am concerned, the doctor did not finish the procedure.

    I have 6 holes in me now which will give false negative biopsies too, in addition to the blood tests a couple months ago --which, by the way I've never heard anything about.

    No doctor ever commented on those blood tests, and they didn't show up online, I looked!

    I wanted the endoscopy for my choking and swallowing problems anyway and the colonoscopy because I have put it off for too long--they did find a polyp as was expected after 65 years of being undiagnosed gluten intolerant/wheat allergy/Celiac.

    gail


  5. The only bacons I've ever seen that have gluten are Farmer John's (??) and the bacon at McDonalds, which isn't a real bacon anyway.

    richard

    ---------------------------------

    OK that's it!! I've been dosed. I though I had been but couldn't figure what did it. And dosed for about 5 days straight with Farmer John's bacon.

    I'm going for my colonoscopy finally a week from tomorrow, my driver gets all my bacon. I gave her a big box of food yesterday because I went through my spice shelf. Even the instant mashed potatoes????? had gluten. Hey potatoes--no gluten in them.

    On the brighter side, I get my chest freezer tomorrow 14.8 cu feet, energy star. So I can make my own frozen mashed potatoes and just warm them up. So there!

    I will go through my fridge freezer and locate all the food with gluten and she gets those too, bags of flour etc.

    And I'm getting a/c installed within two weeks so I can cook during the summer on hot days.

    Life is good and bad. :unsure:

    better now on the diet.

    Sure glad these old posts get saved a long time.


  6. > I used to have bruises all over my hands and arms, but no longer. .. I >used to have really bad post-nasal drip and that has improved >dramatically.

    Hi, I had the bruises too, mostly legs, they went away on the diet, came bach when went off the diet, since back on the diet they are growing fainter. proof enough for me.

    runny nose almost stopped on the diet, came back in a half hour when I went off the diet, not to mention the allergy and shock symptoms.

    gailc


  7. <Gail, have you ever tried eating organic grass-fed beef?

    Hi, I gave it up the second time because the cramps made me want to shoot myself. Also at the same time we had that Mad Cow scare, and I just said"that's it". I had given up hamburger several years before that. Hamburgers were the first kind of beef to bother me.

    The problem with beef is that it made me sick sometimes. How can you eat a food when you know you may be up for 11 hours while your entire body empties out? I could get sick before leaving a restaurant.

    I'm not trying any form of it because it repulses me now. Miss prime rib, no disire for any other beef. But when I discovered I could eat horseradish on other foods(chicken, salad, french fries) I felt a lot better having to forgo prime rib. the smell even bothers me now, except for the smell of prime rib.

    I'm not saying I will never eat it again I just don't have any desire to.

    gailc


  8. I had no allergies in San Francisco. I moved away then 3 years later I had very severe allergies in spring and summer until I moved again 200 miles away and they went away.

    After 3 years there the allergies came back.

    I moved again and had allergies after a few years. Then they mysteriously went away. Then they came back in the WINTER. Then those went away.

    I cannot tell the difference between an allergy attack and a cold, and the doctors never could either. I go by how I feel.

    I had a 3 week binge of allergies this February, after years of none, never quite felt sick this time--so allergies. They went away when it started raining, major clue. It was just after that (end of March) I went gluten free until the challenge.

    Now one week gluten free(again) and only time will tell. Could be years to feel very confident.

    gail


  9. I neglected to say in my initial post that this has happened about three times in the last three months. It seems to begin with some tenderness in my lower abdomen, usually toward the left flank. Then the sharp, shooting rectal pains develop later. These cycles have lasted 3 to 6 days.

    Steve

    I hope you are still watching. Would like to see your update on this matter. I had this every time for a year or so, cramps and sharp pain, burning afterwards. It went away in a week when I went gluten-free. Maybe you are missing a hidden gluten. I just found your post by googling to see if anyone else had it.

    gail


  10. I live in Riverside and I am also trying to locate people in my area or somewhere in between mine and LA.

    Ditto, Long Beach

    Mostly on how to deal with doctors and nurse practioners who only are interested in frequency of diarrea when you told themn over and over you don't have diarrea.

    Would be nice to sample recipes. Who wants a whole tray of an awful recipe? Nice to sample and then choose.

    gailc


  11. Oh yeah, I forgot to mention I am on gluten for the biopsy but I cannot do it. I'll go off gluten again tomorrow and move up the date for the colonoscopy and endoscopy and probably blow off the biopsy. After reading the latest book it makes no difference in TREATMENT celiac and non-celiac. I did verify the immunization I got in December was for the correct pneumonia etc.

    I ate my favorite gluten foods for the blood tests but they somehow didn't taste as good as I had remembered them. I even had 'goodbye' beers. I decided none of ttha food is worth cheating for.

    gailc


  12. Please don't diminish ALL self-diagnosed people.

    I have not been diagnosed yet, results of the blood test should come in by Monday I imagine.The test already in show some anemia.

    I AM self diagnosed as at least gluten intolerant. and diagnosed 'allergic' to wheat 50 years ago by an allergy doctor who had me do nothing about it. I never knew I had any symptoms.

    I WILL be 100% compliant with being gluten free, I get cramps within an hour of eating gluten and I cannot hide the pain. I was gluten free for 6 weeks until a restaurant slipped some soy sauce into my salad. I was doubled over with cramps by the time I left the parking lot, cramps and other problems continued 2 1/2 WEEKS until I ate wheat for the blood tests.

    I wanted to be diagnosed with celiac so I would have a little extra 'push' to be gluten free. When I started eating wheat to get the blood tests and had a bunch of allergic reactions(first time in my life from food) I decided 'never again'. I feel I also need an epi pen for screw ups in the future. Those reactions were in addition to the normal cramps and dozens of other reactions I get.

    I am fortunate in that I find it easy to cook gluten free because I have never (except turkey gravy at thanksgiving)used gluten in cooking, same goes for lactose. I am also on a very low salt diet so using prepared foods in my cooking is out or at least minimal. Baking is another proposition. restaurants on the other hand may be impossible. Fortunately I live about a mile from Whole Foods and Trader Joe's. those took care of baked goods. I had never been to the Whole Foods store before. I'm now there a couple times a week. They even make a sandwich for me gluten free.

    I felt really great on the gluten-free diet although I need to tweak the diet a little to get proper nutrition and 'cure' one more symptom.

    gailc


  13. Hi, I'm back.

    well about 6 weeks into being gluten free (actually quite easy for me) and a restaurant slipped some soy sauce into my salad dressing. I got to the bottom of the bowl and noticed UH OH dressing kinda tan. cramps before leaving the parking lot. Good I guess that my body tells me if I have eaten gluten. :o

    Then 2 1/2 weeks continuing gluten free and many of the symptoms which had come back, at least the digestive symptoms, were slowly fading.

    During all this time I was trying to see a GI doctor at Kaiser who was familiar with celiadc disease. The primary even put a referral to a GI DR. and noted 'celiac'. Trying to schedule a colonoscopy and endoscopy.

    They refused to let me speak with a doctor in the GI department, finally I accepted a nurse practioner. All she wanted to know was the frequency of diarrea to which I replied 'I don't get diarrea I get constipated, but being gluten free I have gone from a frequency of 1 1/2 weeks to every day'.

    She asked again the frequency of diarrea I responded 'ZERO'

    She asked agin the frequency of diarrea I responded 'I don't get diarrea'

    I guess there was no checkbox on the computer matching my reply.

    And again and I responded 'It has been years since I had diarrea'

    She mumbled something about celiacs have diarrea and inplied I didn't have a problem.

    Actually less than 50% of celiacs have diarrea but I was beyond trying to deal with this person, and trying to be polite.

    I asked if the blood tests needed me to be eating gluten, Since I hadn't eaten any for over two months I was concerned. She said 'I don't know'

    I asked about eating gluten before the biopsy and insisted they could do it with a colonoscopy and It didn't matter that by then I would be almost4 months gluten free.

    When I relayed this informat to the primary doctor his response was see a GI doctor. Running me in circles.

    So later that day I started eating gluten. Small amount at first about 1/4 of a teaspoon of a cookie(by mistake, I was going to wait but I forgot).

    Good thing I did it then when I was with a friend who has a celiac niece. My throat started closing, sore throat, ears like water in them or coming down from high altitude, earache and ear clicking, then almost losing my voice. Breathing got labored--a little.

    When I dropped the friend off she wouldn't get out of the car. Later I realized whe was waiting for my symptoms to go away. They did quickly and I went to the grocery where I got the stomach cramps as usual.

    I did manage to eat wheat until the blood tests but they are not back yet.

    I have read 'Celiac disease a hidden epidemic' Dr peter Green Columbia University Celiac center.

    and this week I read 'Healthier without wheat' dr stephen wangen of the IBS treatment center in Seattle.

    The latter book has answered all my questions. the biopsy for celiac is extremely error prone, requiring experts which I doubt I'll get.

    My attitude is now 'SCREW IT i'M NOT EATING GLUTIN' so why bother with any more testing???

    so I have decided to go off gluten and not do the 6 weeks (a guess) required for the biopsy to be valid. Have found out otherwise since, but my symptoms show up within an hour so I know I am reacting.

    Actually I ate wheat yesterday with no cramps so I don't know what's going on.

    The main reason for the celiac diagnosis was you have to be very vigilant if celiac and play by ear if just sensitive--WRONG !!!! If just intolerant you damage your body each time you eat gluten.

    So I have my answer. I will put on the consent form 'I will not pay for a celiac biopsy'. Kaiser tells you something is free then sends you a bill 5 months later. I just got a bill this week for my December tetnus shot.

    I have had my goodbye beer, cookies, bread, cake, eggplant parmesan, and very odd, none of them tasted as good as I remembered.

    Since I NEVER cook with gluten (cooking does not include baking) nor with lactose I am in good shape diet wise. The only cooking I ever put flour into was turkey gravy and I can do without that.

    So that is my update, gluten free as soon as I polish off some strawberry shortcake.

    Oh yes, I have over 40 symptoms and signs of gluten intolerance, but not the rash. The more I read, the more I find. Too bad 65 years of doctors didn't

    gailc


  14. I don't think Stef has been around here much in the last year Gail; that is a pretty old post.

    I am not sure why you are considering glutening yourself for 2-3 months in order to try to get someone to tell you not to eat gluten when you know you shouldn't eat it anyway :huh: It really doesn't make much difference whether it is celiac or gluten intolerance at 65 years of age - you just need to get off the gluten before something bad happens. :unsure: If you do go back on you will definitely get sicker than a dog, probably so sick that you will not be able to make it through the challenge, like so many before you.. If you already have osteoporosis and lactose intolerance, and are at risk for diabetes, one would hope that that would be a sufficient message :rolleyes:

    I'm thinking you are right but I would still like to know if cancer screenings should be stepped up. I hate being knocked out anymore than necessary.

    gailc.


  15. I don't care what label you put on what I have, I just would never go back to eating gluten to find out whether or not there was a label, because it is possible that I would not get a label after all that

    I agree with that, but if Celiac the incidence of colon cancer is so high 100x that I would want to have a colonoscopy more often.

    With celiacs is the cancer also in the top part of the colon?--the part they never look at?

    Is there a recommendation as to how often to have endoscopy to look for cancer and colonoscopy for same? I would think it would be more often than just 'sensitive'.

    I was also hoping if just sensitive that I could cheat on the diet. If celiac I would never cheat. Colon cancer is not an acceptable mode of death for me. I would skydive and take up other dangerous hobbies before that got me.

    I am sensitive to beef and eggs. The 'cure' was don't eat them for six months. It worked, but the beef sensitivity came back. I eat eggs a lot, the sensitivity never came back, but the beef did and I just don't eat beef now for that and other reasons.

    My other sensitivity is rice, it turns to concrete in me. Feels like concrete with razor blades. But on this diet rice doesn't do that. I'm eating rice bread, rice noodles, rice cookies, and cooking it plain for my stir fry. All with excellent results.

    I'm hoping the ridges and flakes and lines and paper thin fingernails goes away like yours. I have also had some splitting. I'm wondering how long it will take to see a difference, apparantly a half year to grow enough to see well, longer to see if the flaking stops

    I was told by a plastic surgeon that I have thin skin so I avoid steroids at all costs. They thin the skin...and bones.

    gailc


  16. Say you are sensitive to gluten, it makes you sick. I am sensitive to dairy and beef and have been sensitive to eggs. I don't tough beef although now after 6 months I could, this is the second time for beef and now I am absolutely repulsed by it. By the way eating beef made me sensitive to poultry. I quit beef and now poultry doesn't bother me.

    So say "I am sensitive but not allergic, I don't have to go to the hospital but I really get sick."

    Then don't eat gluten at all if it makes you sick.

    I will go back on to get diagnosed but if too traumatic I'll stop. I'll get some pain meds though.,

    The problem then would be to determine how often to have a colonoscopy since Celiacs have a much much greater risk.

    If my osteoporosis goes away and the lactose intolerance goes away I will self diagnose Celiac disease.

    Lactose Cramps often go away in about ten minutes to a half hour with immodium. Did you know that? Bad thing to do I guess but it is seldom for me, a couple times a year. My cramps go away by themselves sometimes, but if they last over ten minutes they don't and would last 11 hours if dairy is the culpret..

    My cramps with gluten are short term, a few minutes my problem is getting the intestines to move the food and all the other pains associated with constipation and the undisputed worst thing-- nausea.

    gailc

    It is your decision but I would discuss it with a doctor for pain help.

    gailc


  17. I forgot to say a couple years ago I lost 22 pounds in less than a month when I reduced my salt intake, I went quite low but never lower than 500 mg which is what I found on the internet. I lost 4" off my abdomin, not tape measure style but it used to stick out 4" more. I went form 'chunky' to a gut like a model except for the flabby skin. It was water or the term I like to use 'inflamation'.

    Had a bunch of other symptoms disappear too, like edema, they never came back.

    gailc