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flowerchild

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  1. Erin, Best of luck to you! Wish I'd found out in my 20's. After many years of supposed "IBS", it took probably 3 months before the D resolved itself. Don't worry - good times are ahead. Now I never ever get D unless I've been glutened - then the cramping etc. comes back with a vengeance. It's good to stay off dairy for awhile til you're healed - and wholesome foods are always good. I found I had trouble eating raw vegetables at first, but after cooking them for a few months I love my salads now. Just treat yourself as though you're recovering from a long and serious illness and give it time. Be sure to check your soy sauce, salad dressings, OTC and presription pills, and lipstick - those are common culprits. I've learned to stay away from marinated meats and prepared soups and salads unless someone can positively identify the ingredients for me. Even those chicken chunks you put on your salad sometimes contain soy sauce and other forms of gluten. Read anything that comes out of a freezer bag - even something as innocent as frozen carrots - ya just never know.
  2. I'm taking a friend to the grocery store this weekend who has to go gluten-free. My own odyssey started when I broke my leg and found out I had osteomalacea and multiple vitamin and mineral deficiencies - after 14 years of going to doctors trying to manage my "IBS" and "gastritis" and "esophagitis", "ulcers"... etc. I've been gluten-free for a year and a half and it is overwhelming at first to know where to begin. First you have to get over the denial part, and just accept that you need to go without gluten. Easier said than done, I know, but there are worse things in life. If you're still having symptoms after 3 months I'd say cut out any dairy and yeast and soy for awhile, too, and see if that helps. I went dairy and yeast free at first, but now I don't have to. I haven't had a yeast infection in over a year, that hasn't happened in 40 years. I very rarely buy prepared gluten-free foods anymore - they're nearly always over my budget. The bread is especially disappointing. Bob's Red Mill makes good gluten-free flours for making your own bisquits and cornbread, pizza crust, etc. Some of them are surprisingly delicious and when you add butter or toppings you won't miss the "wheat" thing. If you are craving cake - look for a "death by chocolate" recipe online. Non-celiacs love it too. If you really need crackers (my downfall), Mary's Gone Crackers are a nice earthy flavor for creamy cheeses, and I always keep a bag of plain tortilla chips and plain veggie chips on hand. The produce and meat sections are nearly all gluten-free. Things to watch out for in produce are: bottled dressings, egg roll wrappers, sushi, packaged salads and nuts and other snacks with seasoning on them. In the meat section be especially careful of marinated meats and pre-seasoned chicken and fish. (the same is true of restaurants - things like brisket and fajitas can be full of soy sauce and therefore gluten) In frozen foods, nearly all packaged foods with sauces have gluten in them, also be careful of innocent-looking precooked chicken and other meats. They're frequently coated with soy sauce to give them that appetizing look. Also be careful of grilled chicken salads at fast food restaurants for the same reason. At Mexican restaurants I stick to ranchero chicken, which is stewed. (And don't you hate those places that bury the dang croutons in your salad?) Even tho rice and potatoes are safe, if they're convenience packaged with seasonings and sauces they're likely full of gluten. Most Campbell and Progresso soups and other soup mixes are off limits, but they are usually clearly labeled and some are fine. I've found that with gluten-free broths I can make better soups than anything that comes out of a can. I just avoid convenience foods in general these days, and try to think positively about all the chemicals and preservatives I'm not eating! (but believe me I still have nightmares and wake up in a cold sweat thinking I'm about to bite into a large hoagie..) Hope some of this helps. I know it's hard, but your body is definitely worth it and it gets easier as you go. I used to live off Immodium and Zantac and Levbid and anti-inflammatories. Now I don't even have to take BP medicine anymore. I'm down 20lbs and I take an aspirin and vitamins every day, and that's it! Best of luck!
  3. Hi Carolinamom I feel your frustration. My vitamin D level measured 5 about 8 months ago and I was put on the 50,000IU prescription twice a week plus 1000IU a day d3. 5 months later my levels rose a bit (to 15) but not into the safety range and the doctor wanted to increase it to 3 prescription pills a week plus 1000/ day. I didn't want to do that because the prescription is so expensive (and I was already under pressure from my husband to get off it) so she told me to go to a specific pharmacy and ask for a 5000IU non-prescription D3 which they (and many) pharmacies keep behind the counter. She also said it was more absorbable than the prescription and a lot of her patients did better on it than the prescription. (so why even prescribe??) You might ask your doctor about it. It's D3-5 cholicalciferol by BioTech. If you have a small mom and pop type pharmacy, or one attached to a hospital - they'd be more likely to carry it than a chain pharmacy. I took the 5000IU every day for a month and now take it every other day and as of a week ago my D level had risen to 30 and I'm starting to feel wonderful - much less tired and actually energized when I exercise - something I hadn't felt for a very long time. My blood pressure and weight are both dropping and the muscle cramping and heart palpitations are almost non-existent. My hair has stopped falling out and my nails are growing in strong again. I don't know which of my symptoms were attributable to the D deficiency and which to other deficiencies caused by malabsorption, but something is definitely working. I also had low levels of calcium and B vitamins, all of which have come back up with supplementation and a gluten-free diet. Hang in there, you'll get there. It won't happen overnight but positive things will begin to happen.
  4. Hi. I'm new too, although I've been following these forums since my diagnosis nearly eight months ago. I too had extreme muscle fatigue and all over exhaustion and weakness which seemed strange after a lifetime of walking and exercising. 3 ankle sprains, 2 torn hamstrings, a torn bicep and a broken leg - in addition to various severe digestive complaints, yeast and bladder infections and unexplained heart rhythm disturbances are what drove me to find answers. The neurologist, gastroenterologist, cardiologist, gynecologist and orthopedist all threw up their hands but one sent me to an endocrinologist who found deficiencies in B vitamins, calcium and vitamin D. She said "you might consider eliminating dairy and wheat" and those were the magic words. The D was so low it barely registered even after 4 months of high dose supplementation. Now it's finally approaching normal levels and my muscle strength is increasing. My hair has stopped falling out, my skin and nails are looking normal and I'm feeling great - until I accidentally blunder into gluten. Dairy no longer seems to be a problem. So- definitely get your D levels checked. After years of barely functioning digestion you could be short of many vitamins and minerals.
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