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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About JodyM75

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    Community Member
  • Birthday 02/26/1975

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  • Gender Female
  • Interests Gardening, reading, jewelry making, crochet, sci fi
  • Location Fairfield, PA
  1. Barrett's Esophagus & Celiac

    Yes, lifestyle changes helped me a lot.  Not eating big meals after 7:30...not drinking a lot of water or having a lot of soup all at the same time...I think those are my biggest two.  Oh, and I'm 40lb down from my heaviest, that helps.   I have recently had good luck with heartburn control using - don't laugh - an essential oil blend doTERRA produces called DigestZen.  I wasn't expecting much, but two drops in water, drink it down, the heartburn was gone in less than 5 seconds and didn't come back that day.  I used up the sample my friend gave me and bought the whole 15ml bottle.  I'm very surprised.
  2. Barrett's Esophagus & Celiac

    Yes, they work hard to make it very scary.  Let's be clear here, though.  According to the National Institute of Health, about 1.5-7 people out of one hundred have Barrett's Esophagus, and the risk of them getting Esophageal cancer is .5%.  That's it.  That's pretty low.   If your diagnoses was just visual it does not count.  You can only get diagnosed via biopsy.  My previous GI diagnosed me with Barrett's without a biopsy, and when I found out that was a no-no, I switched doctors, got the biopsy and it came back negative.  For several years my mother was terrified about the cancer risk for no reason.   Keep in mind....a lot of this is the PPI and H2 drug manufacturer's pushing the fear....   I have had a hiatal hernia since I was 17 with really bad reflux if left untreated (I do take a PPI, but am weaning off because I don't want the eventual side effects).  I went unmedicated for 9 years.  Total, I've had this problem for 23 years and I'm frankly surprised I DON'T have Barrett's.  Going off gluten didn't help me, either.
  3. I had a biopsy done when I was going in for a routine EGD (I have a hiatal hernia and get these every 5 years).  The results came back with mild to moderate damage consistent with celiac.   I had blood tests two weeks later that were normal, no antibodies.  Is your son currently eating gluten?  You need to be on a gluten diet for the bloodtests to mean anything.   You need ot make sure, though, they are sending you for the right test.  My doctor originally gave me a bloodwork form to check for lupus!  The test came back negative for lupus, but I had to request the correct bloodwork form and then fight not to pay for the one done in error.  Good luck!
  4. So, I've got this wonderful thing going on where I can get to sleep fine, thank you very much, but I wake up in the middle of the night and I'm up.  Every. Night.  Doc originally put me on Ambien, which helped one night.  Then she switched me to Ambien extended release.  Same thing.   I've been taking Lunesta 3mg for 5 nights.  Worked the first night, waking up at 3am since then.   The fact that these meds aren't touching this problem really concerns me.  The docs seem concerned, too, but just keep switching me around.   I am also taking melatonin extended release.  Helps me get to sleep, but nothing much in the middle of the night.  I've even tried waiting unitl I wake up at 3 and taking it then, but it doesn't help me get back to sleep.  I also get outside in the sunlight every day for at least 15 minutes.   They also sent me to a local lung/sleep doctor, who taught me meditation/yoga breathing.  I already knew yoga breathing.  I did give it a try, though.  He wanted me to get up at 5 am and breath for an hour and 20 minutes every morning.  As much as I believe in preventative medicine and alternative therapies, I was resentful every time I did this and decided to stop.  And, frankly, I have a hard time justifying paying a specialist to teach me meditation breathing.   Three months of this is a long time, and I do recognize my stress and anger when I initially wake up is probably half the problem.  I don't know how to break this cycle, though.    I have had this happen before, years ago, but it wasn't this bad and didn't go on for this long, but Tylenol PM helped then.  Does anyone have any suggestions?    I should also note that I've decided to switch from my current PCP to an Internal Medicine office nearby, because I really don't like the "pat me on my little head and send me on my way" bedside manner of my current doc.  I haven't for a long time, but this last time really set me off.
  5.   This is so incredibly helpful and positive, thank you!  I'm coming up on my first holiday season after diagnosis.  I've been dreading it, but this really helps!  I'm off to look up other holiday posts on here. Thanks for the recipes, too!
  6. I'm Always Tired.

    I'm curious:  Swedish Bitters for energy? 
  7. The Gluten Dude did a post on kitchen "safety":   It's interesting to see how others handle the issue.
  8. I was spending so much time and energy stressing myself out trying to find the perfect gluten-free bread, rolls, treats, crackers, etc., that I gave up and went grain free.  I went Paleo and took out grains and veggie oil, too, but not dairy (yet).  I'm happier for it!
  9. If you hurry and follow up fast, the lab may still have the vials of blood and they can do the correct test.  I was told my lab keeps the vials for at least 3 days. 
  10. For those of you who don't eat soy....why?  What were your symptoms?  What are your symptoms if you've been "soy'ed?"  I'm trying to figure out if I need to drop soy as well....many thanks!
  11. I have been on prescription Prilosec/Nexium/Generic for over 15 years.  I was on 20mg 1xday, then 40mg, then back to 20, then 20mg twice a day.  I have a hiatal hernia that causes bad heartburn no matter what I eat, etc, so mine is a plumbing problem and not (necessarily) a food issue.   In June 2013 my dose had been upped to 20mg twice a day.  I had known for some time that this med caused some side effects and in September 2013 I decided to start weaning myself off.  The kind I get is a capsule with little white balls inside.  I know there are other kinds.  Anyway, I opened one up and counted the balls: 18.  I started by taking one ball out, so I was taking a dose with 17 little balls.  I did that for two weeks (17 little balls twice a day).  After two weeks, I bumped down to 16 balls.  I kept that pace up until I was at a half-dose in January, and I've been there ever since.    This dose is working fine for me, I haven't really had any breakthrough hearburn.  I will try to continue weaning myself down.  I did this without telling my doctors I was going to do it BUT I have told them since then.  Everyone is fine with it.  My GI does NOT want me to go lower with my dose but, hey, if I can.....I will.    I was given carafate at one point (when they thought I had an ulcer...I didn't) and it made me nauseous.  They told me to stop taking it.   The kicker is with PPIs or H2 blockers that you can't stop cold turkey.  If you do, the acid comes back WAY worse.  Your stomach knows its supposed to be producing acid, it knows for some reason it isn't making enough, so it produces more acid producers.  SO, when you stop taking it cold turkey, you get a real whammy.  It's called Acid Rebound; there's oodles of info on the web about it.
  12. French Fries

      Me, too!  I feel very lucky, but it is also incredibly frustrating because I have no idea if I'm being strict enough or not.  I guess I won't know for sure until I get another endoscopy.  My bloodwork was normal. 
  13. It's funny, I just did a search for "tea" and it told me there were no results in the forums!  Go figure!   My husband have a huge HUGE tea stash at our house, all kind of brands and flavors.  I haven't had tea since my diagnosis but winter is coming.  What should I look for on the labels?  Any brands I should be especially wary of?  Where is the hidden gluten in tea?
  14. A Few Kitchen Questions

      Rats, I hadn't thought of the tupperware....*sigh*   Stoneware is still on the "replace" list, right?