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LDJofDenver

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About LDJofDenver

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  1. Just wanted to share, we know how we celiacs rarely get "safe" holiday gift baskets. My brother sent me the most beautiful GLUTEN FREE Gift Basket! Everything in it gluten-free and/or certified gluten-free. From Biscuits in a Basket -- in Denver CO area. Local, small company, that does one beautiful job. And gets the whole celiac gluten free thing. I'd recommend them. Happy Holidays all!
  2. I too have osteopenia, not uncommon for celiacs. I agree seeing endocrinologist is key. Mine had me on prescription level Vitamin D for two years. Vitamin D promotes calcium absorption, among other things (so even if you're taking calcium it may not be absorbed properly if your Vit D is low). My endocrinologist looked at things at a much more finite level than my primary care doc.
  3. I hope everything went well and you suffered no ill effects. We all (celiacs) experience those anxious feelings when we're going to someone else's home to eat. I cook Thanksgiving so I am in control of all of it, gluten free stuffing and gravy, every seasoning, handling, etc. I have a very dear friend who had us over this summer for bbq and was trying to be careful but ended up cc-ing me anyway. Sigh. Some get it. Some don't. Sometimes even the ones who "get it" mishandle something along the way. I've gotten more gutsy over the years about calling ahead and asking what they're making, what ingredients, brands, what side dishes, etc. - often even insisting that I bring the main dish/item (then I know, if anything looks shaky when I get there) that I've got something to eat even if I pass other items by. Yes, we have to look out for ourselves.
  4. Yes, Virginia, there IS a Santa Claus -- at least for me and other celiacs who love their fruitcake. I was delighted to discover that Old Cavendish makes a certified gluten free fruitcake (yes, certified!). Got mine last week and it is to die for. (my husband is really happy for me because now he can enjoy his fruitcake and not have me staring daggers of pain and jealousy at him :-) Pricey, but I considered it a Christmas present to myself. Have a safe and joyous holiday season!
  5. Gluten Ataxia

    Ataxia as adult celiac. Greetings. I had pretty significant "gluten ataxia" (from what I understand the antibodies that attack the small intestine also attack specific type of cells in the cerebellum - I'm not a medical person, I'm sure you can google this and get some info). I was not diagnosed with Celiac Disease until in my 50s. Among other problems, my ataxia indeed affected my balance and gait -- my Dr. suspected MS (terrifying!) and I was sent for an MRI. Thankfully that was negative and MS ruled out, but I relay that to illustrate how significant the symptoms were. Shortly thereafter I was diagnosed as Celiac, and I would say the 3-6 month mark is pretty much where my improvement happened. I remember reading at the time that "neuro" problems take longer to resolve, once you are on a gluten free diet. I am thrilled to say that ALL of my neuro problems were completely gone in 6 months. I hope this is the case with your son. I have had no relapse, except if I get significantly "glutened" I'll be wobbly and/or dizzy next day or two thereafter. Best wishes for your son's recovery.
  6. You may be able to have the endoscopy without adding gluten back, especially since you've only been gluten free for a month (my endoscopy was a couple months after going gluten-free and still showed extreme damage and confirmed celiac disease) - contact a G.I. doctor and see what they have to say about it. Also, given all the vitamin deficiencies we celiacs suffer from, probably worth an appointment with an endocrinologist -- I had to be on prescription level Vitamin D for almost 2 years.
  7. Gluten Ataxia

    Greetings.  I had pretty significant "gluten ataxia" (from what I understand the antibodies that attack the small intestine also attack specific type of cells in the cerebellum - I'm not a medical person, I'm sure you can google this and get some info).   I was not diagnosed with Celiac Disease until in my 50s.  Among other problems, my ataxia indeed affected my balance and gait -- my Dr. suspected MS (terrifying!) and I was sent for an MRI. Thankfully that was negative, but I relay that to illustrate how significant the symptoms were.  Shortly thereafter I was diagnosed as Celiac, and I would say the 3-6 month mark is pretty much where my improvement happened. I remember reading at the time that "neuro" problems take longer to resolve, once you are on a gluten free diet. I am thrilled to say that ALL of my neuro problems were completely gone in 6 months.  I hope this is the case with your son. I have had no relapse, except if I get significantly "glutened" I'll be wobbly and/or dizzy next day or two thereafter.  Best wishes for your son's recovery.
  8. DO NOT DESPAIR! There's a whole wonderful gluten free world out there. 14 yrs ago when my son was diagnosed we had to order everything via internet. Now there is an abundance of gluten free foods in the mainstream. Important article for you to read: Celiac Disease is a disability and recent ruling huge impact on Celiac students with meal plans http://allergicliving.com/index.php/2013/04/10/lesley-u-decision-a-victory-for-allergy-celiac-access/ I'd recommend you order one of the gluten free grocery guides, these are life savers and will end you standing in grocery aisle reading packages for 20 minutes. There are several (are also apps out there), here are two popular ones: Triumph Dining http://www.triumphdining.com/?gclid=CJXYkfnj6LYCFQsy4Aod7lgApw and Cecelias Marketplace http://www.ceceliasmarketplace.com/ You need to be aware also that you will need a dedicated toaster (yes, toast crumbs can hurt you), colander, cutting boards, etc I had/have similar symptoms - if I ingest gluten I am doubled over within 45min-1hour, and it racks me for several hours. Also had many many more symptoms (like gluten ataxia, for one, dermatitis herpetiformus) that would show up next day (or two) - all depending on how much gluten I ingested and over what period of time, etc. It is individual, some folks with extreme damage showed few or no symptoms! The blood work doesn't lie.
  9. Going To Visit Family - Tips Anyone?

    All good advice above. I always try to take as much of it into my own hands as possible, sometimes I will eat ahead of time - after all, it's really the company I'm interested in and not the food. I know what you mean about hurting feelings, and not get understanding on the other side (like your favorite auntie who says: "oh a little won't hurt you..." ! ). Turning down food: I often just say I have a wheat allergy, then liken it to a peanut allergy where you can't even have trace amounts -- sometimes people "get it" more when you say the allergy word. Or, the old, "Thanks, I'll have some a little later." and no one really notices that I never did have any later. Restaurants are tough. I've been known to have a few pieces of cheese and some gluten-free cashews, etc. in my purse and I nosh on those along with a drink, or cup of coffee, while at a restaurant with others.
  10. I'd like to suggest that (even though you wipe everything down that comes into contact with gluten) you get in the habit of NEVER putting any of your food down on a counter -- instead grab a plate, or paper plate, or piece of wax paper, etc. It's a good habit to get into and adds a pretty foolproof layer of protection in your food handling.
  11. I just had to share this recent find. Since my celiac diagnosis 4 years ago I have pined away at holiday time for a piece of fruitcake. While this fruitcake is not certified gluten free (I am VERY sensitive), I spoke to the owner about their handling, separation and baking process for the gluten-free version of their fruitcakes. The answers satisfied me enough to give it a try, that and the fact that it was a gluten-intolerant doctor friend of his that asked him to develop a gluten free version (the owner said his doctor friend was his gluten-free tester, while he perfected it with various gluten-free flour blends). It's a little pricey, but it's my Christmas gift to myself! So far I've had two nut and fruit rich magnificent pieces and have had no ill effects. They are from Dot & Eva's Oven in PA, www.dotevasoven.com, should you want to give it a try. I, for one, am delighted with it. Happy Holidays to All!
  12. FDA needs all of our feedback: ppm is only half the battle the other is what will the FDA allow folks to print on their labels (should NOT be allowed to state gluten free on front product label, IMHO, if says 'processed in facility that also processes wheat' UNLESS there is testing) Was announced past week that the FDA will await more comments before finalizing regs on gluten free food labeling. Send them your comments! One last chance to let them know your experience and what needs to be done to protect people with Celiac Disease. I submitted comment that if it were peanuts, they would not allow a product to state "Peanut Free" on the label, if on the back of the jar, in small print, it said "Processed in a Facility That Also Processes Peanuts"! Why should that be different with gluten? I've been nailed so many times by products like that, until I finally started only buying prepared foods that state "Certified Gluten Free." Really, why should it be OK to double me over with abdominal cramps, sending me back and forth to the bathroom, making me sick to my stomach, kill all the living villi in small intestine, and open me up to a multitude of other auto immune diseases? If they want to advertise gluten free, they should be required to test for it to ensure that it is. How to contact: The docket will officially open for comments after noon on Aug 3, 2011 and will remain open for 60 days. To submit your comments electronically to the docket go to www.regulations.gov 1. Choose “Submit a Comment” from the top task bar 2. Enter the docket number FDA-2005-N-0404 in the “Keyword” space 3. Select “Search” To submit your comments to the docket by mail, use the following address: The Division of Dockets Management HFA-305 Food and Drug Administration 5630 Fishers Lane, Room 1061 Rockville, MD 20852 Include docket number FDA-2005-N-0404 on each page of your written comments.
  13. Was announced past week that the FDA will await more comments before finalizing regs on gluten free food labeling. One last chance to let them know your experience and what needs to be done to protect people with Celiac Disease. I submitted comment that if it were peanuts, they would not allow a product to state "Peanut Free" on the label, if on the back of the jar, in small print, it said "Processed in a Facility That Also Processes Peanuts"! Why should that be different with gluten? I've been nailed so many times by products like that, until I finally started only buying prepared foods that state "Certified Gluten Free." Really, why should it be OK to double me over with abdominal cramps, sending me back and forth to the bathroom, making me sick to my stomach, kill all the living villi in small intestine, and open me up to a multitude of other auto immune diseases? How to contact: The docket will officially open for comments after noon on Aug 3, 2011 and will remain open for 60 days. To submit your comments electronically to the docket go to www.regulations.gov 1. Choose
  14. Antibodies?

    Here is a link to the University of Chicago Celiac Center, it has tons of information (treatment, factsheets, video, etc): http://www.celiacdisease.net/testing They state on their site that endoscopy biopsy is necessary to confirm the diagnosis. other sites with info on this: http://www.celiaccenter.org/celiac/faq.asp http://pediatrics.aappublications.org/content/115/5/1341.full.pdf+html http://thesavvyceliac.com/2011/04/21/research-diagnosing-children-with-celiac-disease/
  15. Antibodies?

    I'm not a medical person, but my G.I. doc said that, aside for it being confirmation of celiac disease, that they are also looking for certain markers and baselines, plus examining for esophageal damage that may have resulted from GERD (many celiacs also suffer from this), etc. You should ask the GI doc to elaborate. It (the biopsy) may also be an important piece of medical evidence to have for your daughter's school, or for research studies/treatments, etc. I've seen a few trials that would only take celiacs who had been confirmed by small intestine biopsy. Whether or not you decide on the endoscopy, your daughter's blood tests shows she has celiac disease (I don't believe there are false positives - you can search this forum and internet - blood test is quite definitive) so I think your medical provider will tell you that you should definitely begin the gluten free diet. The sooner you do, the sooner the damage stops and she begins to heal. Plus, this is a genetic disease. She got the gene from one side of the family or the other. You may inquire about testing additional family members (including parents).