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LDJofDenver

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Everything posted by LDJofDenver

  1. LDJofDenver
    I've heard many good things about Disneyland accommodating special diets from folks with celiac disease in the family. Here is a link to an article about it: Open Original Shared Link
  2. LDJofDenver
    Be thankful you've got a good doc! At least she's moving onto the next steps to try to arrive at a diagnosis. I had WAY too many years of doctors doing some kind of test, then saying, "nope, results all negative" then hanging up at the end of the message! Finally got one last year who used tests as a way to rule things out, then finally got to celiac disease...
  3. LDJofDenver
    If you end up going gluten free, there are resources out there that make every day shopping less difficult. Many mainstream products (Kraft, Heinz, Kroger, Hormel, etc.) are gluten free, more than you think. There are grocery shopping guides you can buy that will make your life WAY easier at the store. Lists items by category (soups, chips, dressings...
  4. LDJofDenver
    Just had to share an experience with a BBQ place. It's both funny and sad at the same time, because sometimes even the well-meaning just don't get it. Went to pick up BBQ meat (brisket, pulled pork) at a local place - I already know from my local CSA chapter's newsletter last year that their barbecue sauces are NOT gluten free. Their meat, however, has...
  5. LDJofDenver
    That will vary widely, by availability and taste. I love Udi's Gluten Free Whole Grain Bread-closest thing to "real" bread that I've found so far. It is available in mainstream grocers (Kroger/King Soopers) and natural grocers here in Colorado -- usually frozen. There are also some really good textured breads in CO from Outside The Breadbox. My adult...
  6. LDJofDenver
    Yes it is a genetic disease. Which, by the way, means that if you have it, you got it from either your Mother's side of the family or your Father's. And if you have siblings, they have a chance of having it also. You may want to take a look at the genetic testing side, especially for your other family members. Not all celiacs have symptoms. While...
  7. LDJofDenver
    It will end, and things will get better - - WAY better. Most of us have a history like yours with years (sometimes decades!) of misdiagnosis. I was being treated for each individual symptom (a pill for this, a pill for that, an ointment for the skin, etc) - I got the migraines, too. I feel your pain! But now you know, and now it will begin to change...
  8. LDJofDenver
    Outback Steakhouse has a gluten free menu and lots to select from, even a killer dessert. Here is a link to Gluten Intolerant Group North America's link to listed restaurants in that area: Open Original Shared Link
  9. LDJofDenver
    I was never one of the obvious wasting-away celiacs. Skinny as a kid, yes, but at time of diagnosis (in my 50s) a good 25 lbs overweight. As I've met more celiacs at local meetings, etc., I've discovered I'm really not the exception. Most were more like me.
  10. LDJofDenver
    Thanks Lisa! Hopefully it will just keep coming along. It just gets frustrating when you know how careful you've been. Guess I was expecting to be fully restored to normal by now, and that's just not how it works. Thankfully, I've got those annoying menopausal things behind me :P
  11. LDJofDenver
    This is a great place for advice and tips but, most of all, to communicate with so many others who REALLY know what you're talking about and what you've gone through! Another tip to make life easier for you in the kitchen, since you are a "mixed" household. Paper plates, paper towels, wax paper, "your" cutting board, or regular plate -- if it's for...
  12. LDJofDenver
    I don't know if this will find anything in your area, but you type in the zip code: Open Original Shared Link and here's a link to your local Celiac Sprue Assoc. contacts, :rolleyes: perhaps one of them lead you to a few more possibilites: Open Original Shared Link
  13. LDJofDenver
    Things like this will also simplify your life. There are grocery shopping guides out there to make your life WAY easier at the store. They list mainstream products (Kraft, Heinz, Kroger, Hormel, etc.) by category (soups, chips, dressings, spaghetti sauce, etc.) There are lots of mainstream groceries that are gluten free, more than you think. Gluten...
  14. LDJofDenver
    Here is a link from the Celiac Sprue Association website, with contacts in Ohio: Open Original Shared Link Perhaps they can lead to a good source for assistance.
  15. LDJofDenver
    Most of us have a history like that, had it for 10 years or more and misdiagnosed with all kinds of other things. I was being treated for each individual symptom (a pill for this, a pill for that, an ointment for the skin, etc). I feel your pain! It can be a little overwhelming at first. We've all been there. If you don't live alone and your household...
  16. LDJofDenver
    From what I've read on this forum, the gluten challenge lasts from one to three months. You have to ingest it long enough for your body to build up antibodies to show up in your labs. You may also consider genetic testing because that can be done whether you're eating gluten or not, and would also indicate your being at risk (or not) for celiac disease...
  17. LDJofDenver
    I'm not a medical professional but I can tell you that some celiacs are asymptomatic -- the damage is being done to their intestines, but they really weren't experiencing and tell-tale signs of it. One place you might start is with genetic testing. Determine if you even carry the gene that may lead (or have led!) you down the road to celiac disease. I...
  18. LDJofDenver
    I am so glad to read your post! My levels keep nudging down, but not any significant leaps and bounds. I thought it (the slow progress) may be because of occasional accidental glutening (something presumably "safe" at restaurant, a friend's house, etc.). Because I'm very careful at home with same precautions mentioned in other posts above, including washing...
  19. LDJofDenver
    One thing you might consider is genetic testing (now or a couple years down the road), given the number of false negatives that occur with the blood test on small children. It would show whether or not the gene for it is present. Here's a link to 2 articles about Genetic Testing: Open Original Shared Link disease...cScreening4.pdf and 10 Facts...
  20. LDJofDenver
    I'm laughing WITH you, not at you! This past winter I got the most horrible butt hives! They were huge! Obviously accidentally glutened myself. Oh boy. Had to take 2 Benadryl and crash.
  21. LDJofDenver
    One thing you might consider is genetic testing (now or a couple years down the road). Mainly because it would show whether or not she carries the gene for it. If she doesn't, gluten may be something she doesn't need to worry about in her dietary future. Here's a link to 2 articles about Genetic Testing: Open Original Shared Link and 10 Facts About...
  22. LDJofDenver
    My adult son was diagnosed around 11 years ago when, after years of suffering and misdiagnosis (one Dr even put him on anti-depressants!), his new GI doc back then essentially put him on the Atkins Diet for a month (her mother had celiac disease and she thought his history and all symptoms indicated celiac disease). His whole world changed and his problems...
  23. LDJofDenver

    ARCHIVED Choosing A Doctor

    LDJofDenver replied to njbeachbum's topic in Doctors

    Guess it all depends on your healthcare system and on the doctor you find. My primary care doc knows about celiac disease, but not much. My GI doc knows A LOT about it and is very on top of my follow up care and testing, etc. Whereas my primary doc, I don't believe, really thought there is supposed to be any follow up care. More of, "we have a...
  24. LDJofDenver
    Hello again. I am so glad to hear that you are making progress on getting a diagnosis. Good work. I've read a lot about the capsule endoscopy in regards to celiac diagnosis, so I think you are on the right path. Good luck to you, keep us posted.
  25. LDJofDenver
    I know how you're feeling, marthamom. Diagnosed last August and my 8 mo follow up bloodwork showed levels were coming down but were still not normal (and I'm pretty darn careful). My endoscopy at that same time showed sporadic villi, so that still not normal either, but regrowing. My GI doc said she was not concerned, that things were moving in the right...
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