Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

debbiewil

Advanced Members
  • Content Count

    151
  • Joined

  • Last visited

1 Follower

About debbiewil

  • Rank
    Star Contributor

Contact Methods

  • Website URL
    http://
  • ICQ
    0

Profile Information

  • Location
    Maryland

  1. I have the book and I've read it. Actually, I don't think it told me anything I didn't know, it just confirmed things that I've thought for years. Like doctors don't believe patients tell the truth, if it doesn't seem to match with the diagnosis or idea that the doctor already has. So if you say, have liver disease, and the doctor thinks it's because you are an alcoholic, he's already made up his mind and isn't going to test for anything else. And if you tell him you're a life-long teetotaler, he's still not going to test for anything else, because he thinks you're lying. Some other things like that - doctors don't think of testing for so-called 'rare' diseases even if you have all the symptoms. They're told in medical school that they'll never see a patient with this, so they don't test for it. Well, honestly, no matter how rare it is, if it exists at all, some doctor eventually has to see it, right? So if you have the symptoms for it, the doctor should test for it, but they don't. Anyway, the book did describe typical 'doctor think' and had a couple of suggestions for dealing with it. It wasn't a bad book, but I'm more tempted to bring it to my doctor next time I go in, and point out the things my doc does, and why that's not good medical practice. If I did that though, I probably wouldn't have the doc any longer. LOL

    Debbie


  2. Ok, some good stories for balance.

    A friend of mine was working as a waitress a couple of nights a week. A gentleman came in who didn't speak really good English. He did explain that for religious reasons he couldn't have any pork. She suggested the prime rib special. He asked her to make sure it wasn't pork. She said it wasn't, but since he was so concerned, she would check with the chef. She went into the kitchen and asked. The other staff in the kitchen started laughing at her for asking. She said that it was important to the customer, so it was important to her to double check, even though she knew it wasn't. The manager backed her up, and told all the wait staff to always ask when a customer had concerns about the food!

    Was at a fair this summer. Had brought some food, but was there longer than planned and started getting hungry. One booth was serving meat on a roll. I could see the meat being cooked and they only seasoned with salt and pepper. When it was done, they carved it up at the cooking area, then brought it over to another table where a couple of people were making sandwiches. Well, I was hungry and figured it couldn't hurt to ASK, so I went up and said I had an allergy (easiest) and asked if I could get meat without the bun. The girl taking the orders said sure, and turned around to one of the others and said one order with no bun. Well, the guy at the table looked up and said "No bun?" and I figure I'm going to have to

    explain everything, but the girl said "yes, it can't even go NEAR the bun!" While I'm standing there open mouthed, the guy goes "OK" takes off his gloves (I hadn't said a word about them yet!), puts on clean gloves, got a new piece of foil from the box, not one that was sitting out on the table by the buns, walked over to the cooking area and got some meat fresh sliced off the roast!

    And it was absolutely delicious! So there are some people who do "get it". I hadn't said a word about cross contmination or anything, but both of them were obviously aware of the issues.

    Debbie


  3. It was in Elkton, MD at State Line Liquor.

    Go to your local Outback and ask to speak to the manager in charge of ordering. Ask him/her to please begin carrying Bard's Tale (that is apparently the easiest to get) and explain why with their whole gluten free menu and what not. We asked and within a week we were able to go in and sit at a table and drink a nice, cold beer, just like everyone else. :D

    Guhlia, Outback has a policy of rewarding employees when they get a positive customer letter/email about the employee. Write a letter or send an email to Outback corporate, and let them know how pleased you are with this employee and with having the beer available. It will give the employee a boost, which might make that employee and any others in that restaurant an incentive to be even more celiac friendly, and it will also let corporate know that there is a need for this at all the restaurants. Can't hurt, might help.

    Debbie


  4. Rachel,

    If you ever experiment with making different kids of ice cream, see if you can invent an ice cream called:

    "Arctic Altoids" :D

    Hugs.

    Karen

    Bad Karen :rolleyes::lol::):lol::lol:

    Ohhh, that shouldn't be hard at all. They have ice cream all the time with candies, cookies, etc. chopped up in them. Just a good basic ice cream, crush up the altoids or run them through the food processer, and mix them in. The question is - Do we tell people what's in them before serving or not?

    Debbie


  5. Rachel,

    If you ever experiment with making different kids of ice cream, see if you can invent an ice cream called:

    "Arctic Altoids" :D

    Hugs.

    Karen

    Ohhh, that shouldn't be hard at all. They have ice cream all the time with candies, cookies, etc. chopped up in them. Just a good basic ice cream, crush up the altoids or run them through the food processer, and mix them in.

    Debbie


  6. Actually, you could reach the one in Westbury by public transit also. You could take the Long Island Rail Road out to Westbury and either walk (longish) or take bus to the restaurant. I don't know exactly where on Old Country Road the restaurant is (I lived in Westbury a loooong time ago) but I used to live a block from the train station, and I'd walk down or take the bus to places on Old Country Road all the time. I'm not familiar with current bus routes, so you'd have to check on that. Also, there used to be a bus you could catch at the Mineola train station that went right down Old Country Road. So it is doable, but you'd have to check on the bus routes.

    Debbie

    Hey Guys!

    Is there any PF CHANGS in New York city?? Or only state

    http://www.pfchangs.com/location/loc_code.jsp?state=ny

    Sorry I am totally clueless when it comes to this :P

    If its ony state - would it be easy to get there by public transport?

    Thanx for ur help :D


  7. Does anyone else get hypthyroid type of symptoms from glutening? I felt hypothyroid for a long, long time. Cold, skimpy eye-brows, needing lots of sleep, brainfog, forgetfulness, but since being gluten-free and now dairy free for almost a year those have gone away. Just curious because I run into a lot of women with these same symptoms yet normal thyroid levels and I'm wondering if it might be related.

    Actually, you may have had hypothyroid caused by gluten malabsorption. The main hormone that the thyroid makes is T4, but it needs to be converted to T3 in order to work properly in the cells. There are several nutrients needed to convert T4 to T3, like iron, some of the B vitamins, even cholesterol, etc. which are often lacking in gluten sensitive people because of malabsorption. So, your thyroid can be fine, and producing properly, but your cells can be hypothyroid because they can't convert the T4. That would give you the hypothyroid symptoms, but since your actual thyroid is fine, once you start absorbing the nutrients necessary to convert, then the hypothyroid symptoms would clear up. The thyroid does make a small amount of T3, but not enough. So thyroid tests might still show some T3 in your system, and proper thyroid function, but there just isn't enough T3 getting into the cells.

    Debbie


  8. HIPAA is a fedaral law (passed in 1996) which limits insurance companies abilities to deny coverage for pre-existing conditions in most circumstances. You should look into the law, and see if it applies to you. If so, then they can not deny you insurance. You can find more information about HIPAA here http://www.hhs.gov/ocr/hipaa/

    The portability part is mostly overseen by the Dept. of Labor, as it usually (but not always) applies to group insurance. There's more info on that here http://www.dol.gov/dol/topic/health-plans/portability.htm

    Anyway, see if HIPAA applies. If it does, file a complaint and send a copy to the insurance company. In the meantime, check with some other insurance companies. http://www.connecticuthealthlife.com/healthinsurance.html

    Debbie


  9. Depression and fatigue can both be signs of hypothyroidism, which is often associated with celiac. If you think that might be your problem, ask for the blood tests. You need Free T3, Free T4 and antibody tests, as hypothyroid can be an autoimmune disease (Hashimoto's hypothyroidism). The doctor my want to do TSH test, which may give false negatives, Total T3 and T4 tests, or Uptake testst none of which really useful. Insist on the Frees.

    Debbie


  10. Costco. There are a number of Costco brand (Kirkland) products that are gluten-free. Their rotisserie chicken and chicken wings (not the ribs) in the deli dept are gluten-free for a fast dinner or emergency pot luck. And their fresh produce is much better than the selection at Sam's.

    On the other hand, Sam's has better prices on some products, like frozen fish and some meats. But you have to buy more bulk.

    Debbie


  11. Now, I must be doing something wrong, my doctor just isn't listening to me. How did you get your doctor to order these tests? Was it his idea, did you tell him" I think something's wrong with my adrenal gland"? Help me here, I don't know how to approach doctors anymore.

    Good luck,

    Rachelle

    Rachelle, it is possible to order the tests yourself. Of course, then the insurance won't pay for it. But maybe if you had the tests, you could get the referral to the endo. I got my test myself from http://www.canaryclub.org

    It was a package that did the adrenal hormones cortisol and DHEA, thyroid TSH, Free T3, Free T4 and estrogen, progesterone and testosterone for $141.00 Oh, and it's a saliva test, so you don't have to worry about finding a lab to get blood drawn.

    I think there are other places as well, where you can just get specific tests. You can order it yourself unless you live in New York State, which doesn't allow self ordered tests.


  12. Before I went gluten free, the amount did affect me. And also, how much proportionally it was to the total amount I ate. For instance, I stopped eating pasta 10 years ago, because it always bothered me. Well, that was like a spaghetti dinner, where pasta (wheat) was 80-90 percent of the meal. The little bit of sauce or whatever didn't cut the amount of gluten that was hitting my system. But I could continue to eat say a piece of toast with eggs and bacon with out noticing anything, because it was a smaller amount, and there was enough other food so that all the gluten didn't hit my system at once. So yes, if you are still eating gluten, the amount you eat and what you eat with it will have an affect on your symptoms.

    Debbie


  13. Borders stores are changing their cafes - they will be run by Seattle's Best Coffee Co. Well, I love to read, and stop in at Borders every week or two, and a coffee while I'm there is a plus, so I called Seattle Coffee Co. Very nice Customer Service rep. who told me that all of their coffee was gluten free, but that they purchase the chocolate (mocha, chocolate, chocolate chips) from another vendor. The vendor does not use any gluten in making the chocolate, but the machinery used does also make gluten containing items. And while it is washed throughly, they can not guarantee it against cross contamination.

    Debbie


  14. Thyroid disease is frequently associated with celiac as well, and overweight is one of the first signs of hypothyroid. Adrenal insufficiency is another autoimmune disease that can be found with celiac, and overweight can be a symptom of that as well. So I think sometimes there are actually a couple of contributing factors, and it takes longer to diagnose because there are opposing symptoms. Many times, when one autoimmune disease is identified and treated, others will either clear up on their own, or the symptoms will become so obvious that they are identified and can be treated.

    Debbie


  15. It's thyroid. Don't believe the TSH tests. A couple of years ago, they changed the standards for the test and made the top TSH normal number 3.3, AND advised that some people need treatment if TSH is over 2. Most labs did not bother changing their normal range, which was 5.5. So many people are over the correct (3.3) number but the lab still says it's normal since it's under 5.5. And the TSH isn't a thyroid hormone anyway, it's a pituitary one, so the test is often not accurate for thyroid. The best test for thyroid is a free T3. ASK your doctor for that test. And the free T3 number should be in the top third of the "normal" range. So don't let them tell you it's normal if it just hits the bottom of the labs range.

    Debbie


  16. Just a suggestion for anyone who has panic/anxiety attacks - you might want to get your adrenals tested. Sometimes malfunctioning adrenals can react inappropriately to minor stress, and dump way more of the adrenal hormones in your system than needed, which will give you all the symptoms of a panic attack. Rarer, but also possible are thyroid hormones. And both the adrenals and thyroid are subject to autoimmune diseases. Since you are more likely to get a second autoimmune disease when you already have one, and this is a celiac board - just a suggestion that you make absolutely sure that there isn't a medical reason for the panic symptoms.

    Debbie


  17. The health food store in town is moving to a new, larger location. They'll have a lot bigger selection of foods AND a cafe area where you can get sandwiches, salads, etc. The cafe is advertising gluten free bread for sandwiches. Now I have to go check them out and see if they understand the whole CC issue, or if I have to "educate" them (g) but it's a start. And since they're a cooperative, they do try to meet the needs of their "owners". I've been a card carrying member for years. LOL

    Anyway, the opening is tomorrow, so I might have to go pick up a sandwich or salad for dinner, and check this out.

    Debbie

    P.S. The word's getting out in other ways. I just saw a lo-carb magazine - I get lots of recipes from them since most use little or no flour - that had a small half page article. Basically it said that if you feel lots better on a low carb diet and have health issues that resolve eating low carb, you might be gluten sensitive or have celiac disease, and to get it checked. It wasn't a very big blurb, but at least it was out there.


  18. I'm hypothyroid as well, and I hate to tell you, but most doctors are as ignorant of thyroid issues as they are of celiac/gluten issues. They can easily spend as many years or more missing thyroid problems as gluten problems. The problem is - doctors only look at blood tests. The latest research is showing that the blood tests only identify about 10% of people who have thyroid problems. So the rest sit in never never land and just get worse for years until they are bad enough that the tests can measure them (or they die - actually happens more frequently).

    If you want to read some good books on thyroid, try Hypothyroidism Type 2 by Dr. Mark Starr or Thyroid: Guardian of Health by Dr. Young.

    Both books point out that the "gold standard" blood test, TSH, actually doesn't have a thing to do with the thyroid - it measures a pituitary hormone. So if the pituitary isn't working correctly, your TSH will be off, and the doctors will never catch a thyroid problem. And there are a lot of other factors as well - adrenals work closely with the thyroid, so a problem there can mess up your thyroid tests, which doctors won't catch. Also, if the adrenals are messed up, people often get the sudden HYPER symptoms when they start thyroid meds for hypothyroid, or a flip/flop syndrome - drag part of the time/bursting with energy the rest. But if you go to a doctor with those symptoms, he'll cut the dose of thyroid med, instead of adding adrenal meds, which is what he should do.

    Anyway, we all know how uninformed doctors are about celiac, well they are just as uninformed about thyroid. If you have or think you may have thyroid problems, you'll need to do the research yourself, because the doctor won't.

    Debbie