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nettiebeads

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  1. Just a quick question all!

    I am making BBQ sauce for ribs right now and have added Kroger Dried Minced Onions to the mix....the labeling doesn't have an ingredient list so I assumed it must just be Dried Minced Onions....but I'm 2nd guessing myself now. :rolleyes: Don't you guys think if there was anything else in there they would be required to have an ingredient list?

    Dried minced onions are just that. How did the ribs come out?

  2. I had tried this wonderful, gluten free Thai Kitchen brand Pad Thai....so when in Whole Foods the other day I grabbed a different box they had on sale...Annie Chun's Classic Pad Thai. I scanned the ingredient list, but missed the wheat for some reason because I was assuming it was also gluten free. So I made it and ate it, and THEN....discovered the fact that wheat was in it. Ohhhh nooo.....and I'd been so careful lately, with no problems. Bummer..... :(:(:(

    Note to myself: Read every label religiously!!! Never assume anything!!!

    Sorry to hear of your set back. I've been there, as I am sure many many others have been too.

    Annette

  3. I never got sick right away after eating gluten. My D was usually 20 to 24 hours later. Everyone's reaction to gluten is different, and even then the reactions can change as years go by. My reactions now are severe C, rarely D, fatigue and brain fog, and horrible aches that I didn't used to get. But the really really REALLY stinky D is very indictative of Celiac. I'd lay my bets on his reaction to gluten as his problem, not flu or giardia.

    Annette

  4. I have to agree with ursula re: eating gluten. If you can tie your problems directly to gluten, why keep eating it? I have major C now, even when I don't get glutened. I used to have the D, then C, but my body changed and now it's C to the max. Even when I eat raisins, fruit cocktail, take MOM - still C. So now my major complaints when I eat gluten (accidentally of course) are: overwhelming fatigue, brain fog, and feeling like I got hit by a Mack truck. Very rarely do I get D anymore.

    Annette

  5. It could be a mild bladder infection or uti. I'd cut out all sugar and simple starches for a few days and give her o.j. and/ or cranberry juice (probably diluted). If she still has problems, then I'd go to the dr. But just give it three days. That's always been my mother's theory - if your body can't get better on its own in that time, then call in the dr.

    But remember diabetes and celiac seem to go hand in hand. And don't ever feel bad about going to the dr. whenever you get worried. That's their job to help you keep your children as healthy as possible.

    Annette

  6. Sorry, I'm no help when it comes to medical diagnostic procedures. I was dx'd via diet challenge alone. But I'm just posting to say I know it's not in your head. It definitely sounds like celiac to me. I'm fairly confident that you still have damage in your small intestine since you haven't been completely gluten-free for a long enough time to get the healing really started. I wish you the best.

    Annette

  7. Yeah, it's not supposed to float (but mine almost always do *blush*). My husband is appalled that go 3-4 times a day. He also has gotten used to talking about it. He will gloat that his are well formed and sinking, and I will tell him I am jealous. :P

    POOP ENVY??? :o What would Froid think of that????? :lol:

  8. My boyfriend has just been diagnosed with Celiac disease. Up until this point he sleeps up to 20 hours a day and just can't get up. Needless to say, this affects him tremendously with work etc. Did anyone have trouble with this prior to going gluten free and did it get better once gluten free? I see a lot of posts that fatigue is worse after going gluten free. Is it going to get worse for him? I theorize that maybe he is so tired because he has not been getting the proper nutrients because of the disease but maybe I am wrong?

    Nope, you're right, the body isn't absorbing the nutrients needed and so he sleeps a lot. My fatigue and lethargy finally cleared up when I got rid of the last of the gluten in my diet. I had ignored the four letter word malt in my cereals and alcoholic drinks for years - I should have known better. Anyhow, celiac is an autoimmune disorder and progresses differently for everybody and everybody's healing occurs at different rates. But generally speaking - once ALL of the gluten is out of his diet, things should start improving. But many factors affect the healing rate - how long sick, how much damage, how well he is maintaining the gluten-free diet. Is he having other foods bother him? A lot of the time diary is hard to digest until the intestines have healed enough. Just focus on the gluten-free diet, and beware of cross contamination and hidden gluten sources in meds, toiletries and such. Good luck and keep us posted!

    Annette

  9. Does anyone know if it is too late for my 7 year old son to catch up to his contemporaries? I know some Celiacs will be of short stature no matter what. But I've read in so many places that children who are diagnosed "early" will probably catch up. Does anyone know what "early" means here? He stopped growing at age 4. He's grown only about 2 inches since he went gluten-free 8 months ago. I'm happy that he has, but his friends still tower over him. I've read many posts here where kids are growing several inches immediately after going gluten-free. My husband is pretty tall and I am of average height for a woman. Also, my son's gained almost 9 pounds, but sometimes I think it's because I'm continually begging him to eat and offering him food and not really because his stomach has healed. He does complain less about stomachache but no where near as often. I'm trying to concentrate on the positive, but I just feel bad for him. Any stories to share on this subject would greatly be appreciated.

    Two inches in 8 months is good. Please relax mom, and don't make food a real big issue. I would be more concerned with his motor, spatial, verbal, cognizent (sp?) skills. Is he happy, doing well with others, learning, and plain feeling better? Remember, even w/o celiac holding his growth behind, every child grows at their own rate. When did you husband hit his growth spurt? My husband was barely 5'9" in h.s., but hit a growth spurt when he was 20 or 21 and is now 6'2". There's too many genetic variables to pin his height (or lack of) solely on celiac. Just make sure his diet is balanced and if you would feel better, gluten-free supplements probably wouldn't hurt - talk to his ped though.

    Annette

  10. Wow I'm so glad to see we're all having dreams like this! I always dream that I didn't check some label or ingredients and just ate something carelessly, only to find out later that it had gluten in it! Then I spend the rest of the dream freaking out! I'm looking forward to when these stop!! :blink:

    Well, keep hoping, but after 9 yrs, I still get them, but not as frequently. A month ago it was brownies. The real kind with gooey center - Don't know if it was a gluten dream or that I gave up chocolate for Lent. But it's always the same - I get mad and stick the darn thing in my mouth, then think "WHAT AM I DOING?" and then spit it out and hope there's no damage and then I'm freaking and worried. Then I thankfully wake up.

    Annette

  11. You're for real, right? Not just joshing with us? If you are for real, then you are a breath of fresh air to a lot of people here. If you remember, celiac has about 200 symptoms, and people can be asymptomatic as well. And as with most autoimmune disorders, the severity and course of the disease can vary widely from one person to another. I think the biggest give away on the disease is the stenorrhea (I probably didn't spell that right, but you probably know what I mean) Loose, pale frothy floating STINKY bms are not normal, but very indicative of celiac.

    Anyhow, my former gp (retired) dx'd me through diet alone. I had had a really bad sinus infection, was treated with keflex, developed D. At first I thought it was just a reaction to the antibiotic, but when the D lasted for 6 weeks and was as I described it earlier, I went to my gp, he took me off of gluten. Voila! no D, ergo, celiac. By the way, my gp went to school at UMKC. Makes me wonder if the school and intructors have anything to do with the recognition of celiac by the practicing medical community. So I've never had one single test done, other than the diet challenge. My current gp who knew my former gp (small town) agrees with his assessment and sees no advantage in "confirming" the dx. I know how my body reacts to gluten and that's fine with him.

    Welcome to the board and life without gluten. It can be done. At first it seems overwhelming, but after awhile it will be second nature.

    Annette

  12. My reaction time varies. But what is consistent for me isn't the intestinal, but the "head" problems. Mood swings, depression, brain fog and severe fatigue that can last up to three weeks. So even if your stomach isn't responding right away, (sometimes it took me 24 hours to know that I had been glutened) you are still doing damage. Hon, you for some reason have developed a denial about the severity of celiac. I'm beginning to worry that you will not start taking care of yourself properly even after all of the posts and what your mother has gone through for you and not even for Mallory. Stop the gluten, please!

    Annette

  13. When I am really bloated I feel like I have to urinate but when I try to go nothing happens. This happens to me all of the time especially when I working out. Anyone relate? I guess this is just a factor of being bloated and the pressure on your bladder.

    Also, please look the thread "Blood test-which number is most important?", I posted the results of my blood test and I would appreciate anyone's help on figuring out what it means.

    I think women probably have more "fun" with this aspect then men. Especially those of us who have had at least one pregnancy. That urge can come from so many things - diet, mild uti, mild bladder infection, lack of enough liquids (I'm guilty of that one a lot) and if I'm constipated for more than a day, I'll leak. Good thing the bathroom is real close to my office at work. Could be worse, I guess. At least I don't have to wear an adult diaper!!

    Annette

  14. If the bloodwork came back positive for celiac, you don't might just have it, you have it. How did you feel on the gluten-free diet? and did you feel different off? I never had any of the tests people here have had. I went to my gp with D, he put me on the gluten-free diet, and voila! No D, dx of celiac. No other dr since has questioned his dx. (well, except one but she had no clue about celiac) The diet challenge is a valid diagnostic tool. My current gp wouldn't have me eat gluten to get a test done to confirm the original gp's dx. He thinks that the current tests used aren't sensitive enough to be considered reliable. I know what happens to my body on or off gluten, and that's enough for him.

    So, IMO, go gluten-free for at least one month and see how you are. Be sure to check EVERYTHING that you come in contact with for gluten - shampoos, toiletries, cosmetics, meds.... gluten is everywhere! If you haven't already, cut out diary for at least three months. Celiac damages the villi where the enzymes to digest diary products are produced.

    Keep us posted, and hope you're feeling better.

    Annette

  15. Okay,

    Here is another weird thing I have been noticing - can I pass this off on gluten too??!!!

    For the past month or so, I keep saying to people "hey, shouldn't we turn the lights on?" - or "Do we need to change one of the bulbs?" it seems to me as though, every so often, the lights are really dim, in my house, at work, in the studio.... it last about an hour, or an evening. Then everything is lit normally again. (And no, I never did change any lightbulbs).

    Is it the lights, or is it me?

    Somedays I think I am losing my mind. Sigh.

    :unsure:

    I like having things bright, but I attributed it to the cave I call my office. Or aging. Remember, it's not really the gluten that causes it, but the body attacking itself in response to the gluten. Then the body can't absorb all of the nutrients, which starts a cascading affect to the rest of your body. So remain gluten-free to the utmost possible each and every day!

    Annette

  16. I just checked my Celestial Seasonings Honey Vanilla Chamomile, and it says "gluten-free" right on the box. Which ones supposedly have gluten in them?

    Jeanne

    The specialty teas that Celestial Seasonings puts out at holiday time are made with roasted barley. Their normal line is gluten free. But of course, you can check the labels each time you pick up a box.

    Annette

  17. I feel so defeated and alone with this disease right now. Just the simple things are no longer simple in my life. I feel like everything revolves around food. I cant go anywhere without first taking into consideration whether or not I can eat while there. I ran out of pancake mix this morning and to buy more I need like 5.00. Its so darn expensive. I know I dont have to have pancakes, but its nice on the weekends.

    I just found my shampoo and conditioner have wheat in them. (I posted this on another thread too) So, I tried and ordered Purology online. Well dippy me, didnt find the ingredients list on the computer so I just ordered it and there is wheat in that too! I cant use the stuff bought in supermarkets, as I have naturally curly hair and it makes my curls look awful. I dont know what else to do.

    anyone have any suggestions?

    I feel so alone.

    Tinkerbell

    You are not alone. Sorry I can't help you with the shampoo issue - My hair is fine and limp. My daughter can sympathize with the curly hair, but she doesn't have celiac so she can use whatever. Yep, this disease is an aggravation. Sometimes you do want to be able to take a pill and make it all better. But it does force you to be creative. I make a pancake out of my various flours that I have on hand. It's just flours, baking soda, salt and sugar and then mix milk egg and oil in another bowl and add that to the flours until it's just barely thick enough to pour.

    Hang in there. I thoroughly understand, but I prefer to look at it as taking a proactive stance on my health and life.

    Annette

  18. If your Sunday paper carries the Parade magazine insert - check it out! In an article titled "Can Food Change Your Genes?" there are several paragraphs under the title "Gluten sensitivity: the great masquerader". Good article and gives a good discription of the various diseases that celiac can mimic. It's by Dr. Mark Hyman. Maybe celiac disease is becoming more mainstream.

    Annette

  19. I never seem to get bit by mosquitos even when my friends are suffering. Blackflies (hordes of them on them on the west coast of canada, not sure if they have them in the US outside Alaska) unfortunately love me. I got over 200 bites on my ankles in under 10 minutes and they are so much itchier than mosquitos.

    Blackflies are something I sure don't miss from my years in upstate New York. I would swell immediatly - much worse than mosquitos.

  20. Annette,

    You just freaked me out. I swear to gawd, I just read your post about 5 times.

    I have been feeling like I walk on stumps (like its hard to put my whole foot flat on the floor) first thing in the morning...I have been feeling like that for about two years, but blamed it on my shoes. I was sure it was either time to change my gym shoes (I teach intense fitness classes every day, and so just tend to attribute any ache, pain or muscle soreness or stiffness to that) or maybe that I wear high heels too often.

    I never said a word to anybody about it, just thinking its normal.

    Can you please explain what this is? :(

    Thank you

    Celiac causes malabsorption. Your body's various parts are not getting the nutrients needed to perform and stay healthy. The problem is as an autoimmune disorder it affects everyone individually. No two people have the exact same reaction to gluten and malabsorption; there are generalities though. Neurapathy is your nerve endings (myelin) not getting what they need to produce the synapses to send signals to your brain. Myelin is produced from fat, which if you are not absorbing the type of fat needed - surprise! the myelin isn't healthy, the synapses aren't firing and ergo-neurapathy. Some people on other posts have gluten ataxia (think of it as advanced neurapathy) which is nonreversable. Neurapathy is. It was this forum that convinced me of the errors of my ways. I still have residual loss of feeling in my face and lips at times, but not nearly as bad as it was. And I now have legs instead of stumps! And how in the world can you be a fitness instructor? The fatigue I get from being glutened is crushing and lasts for at least a week. Sometimes a whole lot longer.

    Since you won't listen to your mother, listen to us who live with celiac - GET gluten-free NOW!

    Only because we care and you do have a precious little one who needs a healthy mommy.

    Annette

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